Lisinopril - my horror story and I am still going thru it

By GiGiB Latest Reply 2018-06-21 23:37:46 -0500
Started 2010-01-06 12:11:48 -0600

It all begins in August of 2006. Upon transferring from Puerto Rico, my assigned Primary Care Manager (doctor) got very excited (as usual) that I was a type 1 diabetic. Not requesting any tests, she immediately insisted that I go on Lisinopril to “protect my kidneys”. I went on a 10mg dosage. By October of 2006, I was on my first insulin pump and was doing great. It was recommended that I see an Endocrinologist for my pump adjustments and “the best Endrocrinologist on the Cape Cod area” was recommended to me. I have a tremendous fear of any type of doctor and my blood pressure always goes sky high in the office. I told this endocrinologist that and he did not listen and quadrupled my dosage of Lisinopril to 40 mg daily. In addition to this, without knowing my history, he listed that I had kidney disease and wanted to perform all kinds of tests – I was hesitant about this and did not trust him. My blood pressure reading did not improve much but by then we had orders to Virginia.

Once in VA, my Primary Care Manager (doctor), seemed decent until the end of the year where she was excited about some protein in my urine (which every doc knew about). Again we had orders, this time to California. She insisted I need to go to a kidney specialist. I went to the referral and they did thorough research into all my lab tests and came back stating I did not have kidney disease. My function was a bit low and once in CA, I might want to consider seeing someone there but for now everything was fine.

Upon reaching CA, I did more research on the list of doctors I was handed and settled on a female doctor who seemed decent. Our first meeting went well and she truly seemed to listen. By October of 2009 I was denied my insulin pump supplies (you can read the story on the various blogs) due to the fact that it was stated it was a “luxury item”. I went and fought this and managed to get the policy rewritten for all dependent diabetics here on the West Coast under Triwest. By then stress was taking a toll on me. I went in for my blood work at the end of November in 2009, and my doctor was very negative toward me. I was confused but had found out through a nurse that Triwest “had a talk with her” concerning me fighting for my rights for my pump supplies.

My doctor came back to tell me my kidney levels were falling! My A1C was 4.5 so my diabetes was in perfect control. I told her I was on some herbs and she told me to discontinue these. The month of December, 2009, I was in every week for blood work – for my potassium which was high and my BUN and creatine functions which were dropping. The herbs had not caused the problem. Since I was only on insulin and Lisinopril, I insisted the doctor take me off the Lisinopril – she told me she could not and reduced it to 20 mg’s and put me on a beta blocker at my insistence (I had done the research on all statins and beta blockers). I monitored my bp’s at home with results such as 110/73 and was doing great. STILL my functions were falling. By Christmas I was convinced I was heading toward kidney failure. I insisted she take me off the Lisinopril completely and she complied. In two weeks I went in for labs again. My doctor told me she would try and get me in sooner to a kidney specialist – no calls confirming this and I sat on my hands waiting for lab results.

On Dec. 29, 2009 I had another appt to “discuss” my lab results. Guess what?? My potassium level had returned to normal and all my kidney functions were improving. This was DUE TO THE LISINOPRIL WHICH WAS SUPPOSED TO PROTECT MY KIDNEYS. I had been researching the Lisinopril and found blogs by others who had hand tremors which I had gotten and they had gotten off this med. I also found a small print of medical info that stated that Lisinopril could cause 0.02% renal problems in the population – I had to TELL MY DOCTOR THIS SO SHE WOULD TAKE ME OFF OF IT.

I am furious at the Endocrinolist who increased the dosage and for the doctors who did not track this. Further info on Lisinopril states that it can cause kidney problems and that a person with even minor kidney problems should be monitored carefully and yet, NONE OF MY DOCTORS DID THIS.

I would still be on this medication if I had not been proactive on my health and questioned doctors. I would be on possibly dialysis. What is even more shocking is that my doctor said the kidney specialist may put me be on Lisinopril to protect my kidneys!!!! I DO NOT THINK SO - please be careful everyone!!! Doctors DO NOT always have our best interests in mind.

January 6th I went to the kidney doctors office spitting mad as they mailed me lab work to do - ALL repetitive of what I had just done and I told them to pick up the damn phone and call my doctor to get my labs as I was NOT going through all this again and I told them my health insurance company would LOVE to know that they were double testing me. My result?? No extra labs before my appointment. I also got a consultation with the kidney doctor before my appt and I laid out what I wanted the find out, that being "WHAT permanent damage did the Lisinopril do to my kidneys".

117 replies

WookieMommy 2018-06-21 23:37:46 -0500 Report

Wow im sorry you want through that. My son is 6 he's been on lisinopril for few years because of high blood pressure and having autosomal dominate polycystic kidney disease. Not all medications work same for everyone. I'm allergic to almost every kind of medicine and have some long lasting effects from some taken.

Rocket44 2018-02-22 16:10:40 -0600 Report

I've been taking Lisinopril 10 mg for the past 2 years. I just had blood work done and my liver enzymes and dextrose levels are elevated. They were always fine before taking the medicine. They told me I could have Hemochromatosis and he increased the lisinopril to 20mg. That's what brought me to this site checking on side effects of the medicine. To my surprise I have been having a dry cough since last November and that appears to be one of the side effects. I'm having a Ultra sound done on my liver tomorrow and was wondering if anybody had elevated liver enzymes that was lower once you discontinued the medicine. I hate taking medicines and now he's doubling the Lisinopril. I only have the high BP when I'm in his office. Just took it and it's 110/64 if I take the 20 mg I'll bottom out. Would appreciate some input. Thanks!!!

jaydenmadison 2018-02-09 20:02:50 -0600 Report

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Ches31 2018-01-02 08:36:06 -0600 Report

Stay away from Lisinopril..It was ok at first then went down hill fast. By the time they got it my Kidneys shut down. Spent five days in the hospital and now have damaged Kidneys. Took me off the drug everything returned back. I have talked to other people same thing happening to them. Warn everyone u can.. please..

Type1Lou 2018-01-01 09:28:20 -0600 Report

Not everyone will experience all the side-effects of any drug…if we did, we would all take far fewer drugs. I have been on lisinopril since the 1980's, having been diagnosed with Type 1 in 1976. My kidney function is still good, so, it appears to be working for me. I do make a very determined effort to keep my BG's in control with my A1c's in the 6's. I guess I'm lucky that I don't experience many of the drug's side effects. I've also been taking statins and haven't had any side effects. It's unfortunate that your body has reacted as it has and I feel badly for you. I do make a point to read the contraindications of any drugs prescribed to me. For instance, my podiatrist prescribed meloxicam to treat my plantar fasciitis but I'm reluctant to take it because of its potential effect on my kidneys. Wishing you more bright spots in 2018.

GiGiB 2017-12-29 15:14:33 -0600 Report

Hi everyone, well it's been 11 years since lisinopril. So far the doctors have found out that this drug has destroyed my immune system. I am allegic to a wide range of chemicals and preservatives from antibiotics, to non aspirin, to contact lenses and the list goes on. Blinding migraines and hives. I cant take anything for it, I am allergic to it! I finally found holistic childrens migraine med that I can take. I cant take adult doses. I am still trying to mend. Too many meds piled on me since the doctors want me on them, The reason I am not dead is that I cant take anything. This year I had double pnuemonia and was overdosed on the antibiotic. I have lost some of my site from it and no way to sue as the laywers will state its the diabetes. My family keeps me going but I am getting tired and am starting to despair. Please, if anything, research and ask your doctors questions. Not all doctors are bad. I think many of overloaded with patients. Some are getting kickbacks - there is a site to check that but I dont remember what it is. And…some doctors are just sloppy. If you can send me prayers and positive energy, I'd appreciate it. Thank you

GiGiB 2017-07-21 14:45:24 -0500 Report

Call the makers of lisinopril. They stated to me that it is not a kidney protecting drug. Since the lisinopril I've had severe allergic reaction to every med pushed my way. My immune system is bad. Do research.

Hanksville 2017-03-25 14:45:39 -0500 Report

Here in Mrch of 2017, my physician has just added lisinopril to my medication regime "to protect my kidneys." I do not have high blood pressure, but I do take over a dozen meds for various issues, including metoprolol for a heart arrhythmia, metformin and glipizide for blood sugar. I have not yet purchased the lisinopril because I feel a strong reservation about taking yet another drug in addition to the excessive number I am already taking in order to protect my kidneys. Lab says my kidneys are okay, A1c is improving and at a 7.0, blood pressure remains great, low for my age. Doesn't make sense to me, knowing that every drug you take is another "chemical insult" to your body. Not sure how to handle this with my dr. I am beginning to doubt my dr. Advice?

Chris_d_a 2016-12-28 20:39:01 -0600 Report

I was prescribed lisinopril end of this past summer and in October I was diagnosed with kidney stones & had a very advanced kidney infection!! I was terrified and I thought after 35 years I was finally going to experience kidney damage :-/
I was truly terrified and I went on a juice fast diet for 45 days and only took insulin, in the hopes I could naturally cure my kidneys and bring them back to normal! Well after having 2 abnormal kidney tests then going on the juice fast, my test were all perfectly normal and I felt amazing!!! I got back on lisinopril and have been feeling awful since!! After reading all of these replies I now know why and the 2.5 g dose packs are going in the trash!! Thanks for the posts!!!!!

BriOnH 2016-11-23 03:56:07 -0600 Report

Lisinopril is supposed to slow kidney function down; that's how it protects your kidneys, by lightening the work load. When you have diabetes, high blood sugar can act like sandpaper on your organs, especially the kidneys. When you lighten the work load of your kidneys, everything still gets filtered through the kidneys, albeit at a slightly slower rate, but the force of high sugar (sand paper) is significantly less. Hence, slowing or halting kidney problems. The key is finding the acceptable amount of Lisinopril to Kindey function. The data on Lisinopril halting CKD and protecting the kidneys is indisputable.

Type1Lou 2016-02-12 16:33:19 -0600 Report

I have been taking 10mg of lisinopril per day since the 1980's and have had no adverse effects…just lucky I guess. If we read all of warnings in the drug packages and if the adverse effects of the drug applied to everyone, there would be very few of us taking anything. It is incumbent upon us to learn as much as we can about what we take and do to manage our conditions. I refused a prescription for steroids when I was suffering from bronchitis in October because I knew it would make my blood sugars even more uncontrollable that it already was fighting the illness. It may have taken me a bit more time to get over my cold but at least my BG's weren't stratospheric.

WASHED OUT 2016-02-12 08:55:36 -0600 Report

I have a five month supply of Lisinopril 10 mg. in my cabinet, I after reading about it I just quit taking it. I had a declining Kidney function as well and it has improved since quitting it. I simply told my doctor at a visit I no longer wanted it and wouldn't take it due to kidney function. Well, as you can guess that is where my blood work came out better than it was before and I think it was due to quitting the lisinopril. It seem many doctors think you should take that if you are diabetic, I think the proof is in the pudding. Others seem to be coming to the same conclusion, and I think doctors need to reevaluate their opinions concerning placing people on that drug.

LisinoprilPoison 2016-02-12 07:23:47 -0600 Report

Lisinopril was prescribed for me for high blood pressure. Immediately I felt ill. I took 20 doses before I reached a point I couldn't stand up with complete dizziness. My stomach ached constantly and my blood pressure basically stayed the same the entire time. I was having umbilical surgery so I was able to have a look at my sugar numbers pre surgery and the nurses said I was pre-diabetic with a fast reading of 120. I went back to my original blood tests taken before Lisinopril and my sugar numbers were lower without fasting before I took this med. The surgery is over now and 5 days out of surgery I started to develop tingling in my hands and feet in addition to the rest of these symptoms. The truth is the Doctor never really did much for me except place me on these pills without any real effort to help me to lose weight, change my diet and try a natural route. No difference now the Lisinopril is going in the trash this morning. I am going to get after my health on my own and hopefully the 20 days of this is going to be reversed. I thought for sure I was going to pass out yesterday morning about 20 minutes after taking my 20mg dose. All done now. Wanted to share my story and warn others about the dangers. Glad I did some self help reading on the topic and found countless horror stories like mine. Not out to sink the drug, can see it has helped many. For me it is toxic and poison. If you are having these symptoms do some fact checking. The one constant you will see is Doctors will put you on any of these meds and are brain washed by the Big Pharma companies. They receive kickbacks and incentives to prescribe many of these drugs and they really have no concern in helping your to really tackle your health problems naturally as your body was intended. I wish you the best of luck in finding your own answers if you are having problems of your own. Do the research and I believe you will find your answers. All the best!

rosemarybucher 2015-09-14 11:38:27 -0500 Report

Thank you I just started taking metformin for 6 mths. my docter was mad I haven't been taking my readings. And she put me on lisinopril without any blood test. Its been three weeks , I have been weak, out of breath, stomach sick and running to bath room like I never before. In the back of my head I keep thinking its this drug.

haoleboy 2015-09-14 12:34:42 -0500 Report

lisinopril is for high blood pressure (hypertension) … not something that is indicated by blood tests.

the symptoms you describe are not normally associated with lisinopril but sound more like those from metformin. perhaps your body is just now becoming sensitive to the drug … if that is the case many people find those symptoms go away if they switch to the extended-release version … something you could talk to your doctor about.

I get why your doctor would be upset that you aren't testing … kind of hard to figure out what is and is not working for you in controlling your diabetes with no information. do you have a meter and test strips?


texas momma
texas momma 2016-04-11 08:06:37 -0500 Report

I understand haoleboy…but I am having the same symptoms she is and I am NOT on Metformin…only Lisonpril and Carvedilol. My Lisinopril was increade from 20 to 30 mg..and symptoms are not improving.

Pawle76 2016-03-06 07:42:38 -0600 Report

I'm on both metformin and lisinipril and have never had these problems. Also people on metformin (Glucophage) do not need to check sugar 4 or 5 times a day like insulin users. 1 or 2 tomes a day is fine. Metformin works differently than insulin. You take the same amount of metformin no matter what your blood sugar is. It works by stopping the liver from putting sugar back into your blood.

MsCandiCaine 2015-05-20 10:09:42 -0500 Report

Hi - I have issues with recurrent UTI's. Everytime I get one my BP spikes really high (160/100'S) but comes down once infection is gone. Because of this, my 20 pound weight gain, and family history my doctor put me on Lisinopril in Jan this year. By March I was having horrible cystic acne, strange cough, and panic attacks. I never even had acne as a teen. I went in for complete hormone panel thinking with my age (41) it was that but everything including thyroid, glucose, vitamin levels were normal. I am active in the gym strength training and with cardio. Noticed my BP is now running 100/60's so decided to stop the med. My doctor said it was a low dose so just quit but I wanted to do it slower. I was taking 10 mg daily and cut it in half for a week then stopped. I'm on day three without it and while my acne is clearing which is fabulous I am so extremely exhausted that getting up in the mornings is a struggle. Also my BP is now 140/85 as of last night and feels like it is creeping up today. Is this normal coming off this med and if so, how long does it last? I'm afraid if my BP creeps back up they will want me back on the med and with me being this exhausted all I want to do is sleep so haven't had energy to workout. :-(

SLCRush62 2018-04-17 08:20:44 -0500 Report

MsCandiCaine my b/p was running high all of the sudden. After all these meds I couldn’t stand taking I thought chiropractor. Went twice sure enough went back down. And stopped all the excess meds they were giving me.

Kabby52 2015-02-20 21:06:36 -0600 Report

My cardiologist prescribed Lisinopril along with a dozen other meds after my heart attack. I faithfully took what ever he prescribed. I mean after a heart attack, you tend to do what a doctor tells you to do. Well, I finally asked the doctor why I am taking Linsinopril when I don't have high blood pressure. He said I don't have high blood pressure because I'm taking Lisinopril. However, I complain about headaches and so he told me to half these meds. Well, still convinced that I don't have high blood pressure, I bought a blood pressure monitor and tracked my blood pressure by test it twice a day for several weeks. I showed this to my family doctor and she agreed and took me off Lisnopril for good.

ZIPPEDUP 2015-02-19 15:46:46 -0600 Report

I had a heart attack and open heart surgery in 2013. After the surgery I was put on Lisinopril 10mg. On my next blood test 3months later all my cbc numbers were down slightly. My MD increased the dosage to 20mg and a year later my cbc levels dropped and identical amount to below the minimum levels. I was sent to an oncologist who after numerous tests couldn't pinpoint the cause. I started reviewing my blood work numbers and woke up to the fact that all these cbc level drops started after taking lisinopril. I went on the web and found some studies (one by the cleveland clinic) showing a patient they treated of similar age and similar medical problems for anemia after taking Lisinopril. I found a few more articles that corroborated the cleveland clinic article and told my MD who said there was no way that he had been prescribing Lisinopril for many years with no anemia related issues. On my own I stopped the Lisinopril and had a blood test 45 days later. All three of my cbc levels had returned to within the normal range. When I told my internest about the change he was shocked and told me to stay off Lisinopril permanently. I have had no problems since. I think for some people Lisinopril is a very bad drug. I have reported my findings to the FDA Perhaps they will conduct and investigation.
I just thought this might help someone having anemia who is taking Lisinopril

GiGiB 2015-02-20 16:26:44 -0600 Report

Thank you for adding to this zippedup. Its been 7 years and I am still suffering the reaction to this drug. I rechecked on and now there are a lot more problems listed with the drug. I encourage you to add what has happened to you: I am hoping you are recovering and good catch on what was happening!

Granmama9 2015-01-22 12:05:59 -0600 Report

Good Morning;
I am new on here, I was reading the stories on Lisinopril, WOW, so glad I read them, I was diagnosed with Type 2 diabetes in March of 2013, last week my new doctor put me on this medicine Lisinopril, (my original doctor retired last year).
I like the new doctor, but since she put me on this medicine, I have had side effects, my heart starts beating super fast, I get really light headed, (almost to the point where I feel like I am going to pass out),my face turns beet red, & I get off balance.
I was also told that this medicine will protect my kidney's, & I might lose weight, well, after reading all these stories I will not be taking that medicine anymore, I did not take it this morning, & I will be contacting my doctor, thank you all for posting what you are all going through & have gone through, we know our bodies better than anyone.
Thank -you for welcoming me to this site, Have a wonderful day, take care & God Bless you all, I will upload a picture at a later time

GiGiB 2015-01-22 15:17:21 -0600 Report

Glad you are on the site. It is a good one. Also, check side affects at I just relooked up lisinipril and there are more problematic side affects listed. I contacted the makers of Lisinopril and the medical dept told me hat the drug is not "to protect kidneys", I asked why doctors were telling us that and they had no idea. Contact the company too, if they are made aware something might change. I also filed a report with the fda regarding my kidneys starting to fail from the drug. Some people can take it and some cannot. If your doctor cant answer the questions, do the research. Doctors are so overloaded with patients, it is hard for them to research every little thing. And, besides, we hire the doctors, we can fire them too :)

plebut 2014-11-06 14:25:23 -0600 Report

I was started on Lisinopril a little over 2 months ago for mild hypertension(very mild) and was told since I am a diabetic that it would help protect my Kidneys. I was scheduled to return in 2 months for bloodwork and when they got the results the Doctor's office called and urgently requested that i come back in for repeated tests. The twin sets of tests showed my kidney function had decreased 50% in 2 months.I was imediately told to stop taking the lisinopril and asked to drink lots of water and I am being scheduled for a Renal Ultrasound and renal doppler. I also just had a lung CT because of a dry cough that I was told was probably the lisinopril as well. I am confused as to what to do now.

GiGiB 2014-11-06 21:03:27 -0600 Report

I was referred to a nephrologist who did an ultrasound on my kidneys and with the lab results it showed that once off the lisnopril, my kidney function returned to normal. Please, make sure you understand the lab numbers and ask lots of questions and be proactive about it. I still have joint stiffness and its been 6 years, so it seems I have some permanent damage. I contacted the makers of Lisinopril and they were upset that doctors were using it to protect kidneys - their words not mine. I had the dry cough too along with nausea. Seems like a lot of people had the dry cough..I should have been taken off it then, but my endo quadrupled my dosage and I stupidly agreed to it.

plebut 2014-11-07 01:55:49 -0600 Report

thank you! :)

GiGiB 2014-11-07 09:42:37 -0600 Report

Not a problem. I was also encouraged to file a complaint with the FDA - or something like that. I did the whole thing on line. My nephrologist told me that not enough people are speaking up about the problems with some of the drugs…let me if I can help with anything ok?

Danny Cuth3
Danny Cuth3 2014-07-21 18:29:32 -0500 Report

I think you have your number backwards … Your creatinine level coming DOWN is a GOOD this !!!!

GiGiB 2014-07-21 18:43:35 -0500 Report

I am aware of that thank you. Maybe I did mix up a number BUT, the point is a nephrologist confirmed by the labs showing the rising of some tests and falling were NOT good and showed I was allergic to ACE Inhibitors. You MISSED the point

mwcamp 2013-12-03 10:34:06 -0600 Report

I do not have diabetes but it is in my family. I have PKD Polycystic Kidney Disease. I was diagnosed in 2002, every three years I have had a ultrasound done to check the size of my Kidneys. They have grown an average of 3cm each test until the test I had done today and have had no growth in the past 3 years. Also my lab test for creatine and my BUN have held steady for the past 2 years. Three years ago my Kidney doctor put me on 10mg of Lisinopril a day for me it is a God send and I believe in it for treatment of kidney disease. Like I said I don't have diabetes and my blood pressure is normal.

GiGiB 2013-12-03 15:02:53 -0600 Report

For some people it is a good med. But…there is a small percentage that cannot handle the drug and it causes kidney problems..please keep that in mind. Also..when I talked the the higher ups at the company that makes lisinopril, they were concerned to hear that doctors were being told it is a drug to protect kindneys…that is not the purpose of the is a blood pressure med. However…ACE inhibitors do help with the protein content in the urine …and this what lisnopril is. I wish th best for you and am happy that you are doing well. Not all drugs work well for everyone,

capten 2013-11-27 09:37:36 -0600 Report

I was prescribed lisinopril a month ago after going in for a routine checkup (although I had known about my blood pressure issues for some time, it just has gotten worse recently). They also did blood work at that time.

Couple days go by and I was told about the results of my blood test. Everything was decent, but cholesterol was a little high (I've known this) and there was 1 issue with my kidney function — my creatinine was slightly elevated. Because of that, they wanted to test me again in a month before my next checkup appointment. Keep in mind I had NOT started lisinopril at that point.

Went on lisinopril and felt really good — my blood pressure went down and I felt I could live a normal life again (weeks prior I was getting headaches and dizzy spells due to high blood pressure). Recently I had my blood test done prior to followup apptmt. Results came in, and my creatinine level worsened, filtration level became worse (was fine before), and another kidney function/number worsened (can't recall which it was, but it was normal originally).

Googling brought me here, so it is interesting to say the least that this medicine would harm my kidneys.

They told me to stop the lisinopril and they are putting me on something else. Although I felt great, guess it was doing damage behind the scenes.

Thanks for the info/experiences posted here.

GiGiB 2013-11-28 10:46:33 -0600 Report

Hello. I am so glad my story has helped. My goal is to point out several points: Doctors are not always right and can make mistakes. Check the medication before going on it (doctors do not have time to research) and, if I can strongly recommend, file a complaint with the FDA about what happened with this drug. I did and if enough people do file what is happening, it may save lives and prevent others from going through what we have. You can even call and they will help. I still, after 6 years off being off the drug, have problems. I still have problems with the joints in my arms. I called the makers of lisinopril and filed a complaint with them. Also…the company informed me that Lisinopril is not a drug to protect kidneys but rather is for blood pressure…So…the pharmacuetical reps are telling the wrong thing to doctors.

Mrs.Sweet 2012-10-04 15:12:04 -0500 Report

I'm on the same Med also. Now it hadst me thinking about my fatty liver.

firstflight800 2010-05-02 00:22:53 -0500 Report

While reading the discussions concerning linisopril, it causes me to ask a question to those of you that use it. I have recently started using linisopril myself. I began taking it for one reason. I was taking a beta blocker and then found out that since I also use insulin, I was told by the FAA that it was an "unapproved" practice for me to take them together because a beta blocker masks the telltale signs of hypoglycemia, which could be bad if flying an airplane. So—-enter linisopril. Question is this. I noticed that the linisopril seems to lower my blood pressure quite nicely, but my heart rate seems much higher at rest than it was before. I read that it was something called reflex tachicardia, and was caused by the heart sensing the lower blood pressure and beating faster in an attempt to bring the pressure back up. Have you others also noticed a rise in resting heart rate? and did it level off after you'd been on linisopril for awhile?? Also, I will be watching the other numbers closely to ensure that I am not part of the .02 percent that was spoken of.

GiGiB 2010-07-07 17:55:55 -0500 Report

Hi ..
I am the whole started this with my story. I was on the Lisinopril for 4 years. The beta blocker slows the heart rate down. Lisinopril is blood pressure - did not see it lower my heart rate nor did it seem to raise it but I was under some severe stress for the 4 years. Your endo or General practitioner will keep an eye on the kidney levels. My nephrologist who diagnosed me as allergic to all ACE inhibitors told me that the severe stiffening of my joints was an indication that I was allergic to it and that started less than a year after I took it and no doc caught it. But as a military spouse, we were being transferred every 9 months for the last 5 years. Do more research and contact the makers of Lisinopril (should be the Lupin Company). They can also give you direct answers - really the doctors should be able to tell you too - that is if they are doing their jobs.

Good luck with everything - I am also an advocate for Diabetes - let me know if I can help.
GiGi :0)

Sally Thomas
Sally Thomas 2010-04-16 13:09:02 -0500 Report

I was on lisiniprol for about 6 months-it was horrible! I got the lovely A-C-E cough (it would never stop-up at night 7 or 8 times, kind of defeated taking trazadone-had troubles even doing my job at work) and then it wrecked havoc in my body during that lovely lady time. I complained and complained to my doctor but he stated it was merely an inconvenience and that the good results from taking it were more relevant. What? The only way I got him to change his mind is because my husband is the Pharmacy Buyer for the largest hospital in the area and he researched all the side effects and actually talked to the maufacturers and helped me convince the doctor that this was not a good thing. I have been off of it for a week and a half now. Go back next week to try something new. Hope we have better luck this time!

GiGiB 2010-04-24 23:25:19 -0500 Report

Hi Sally,
It is wonderful that your husband checked that out for you! I did my own research and told the doctor "either you take me off of it or I will take myself off of it". With my research etc. I got the job done. I have since then 'fired' my doctor and have also filed a grevience report on negligence. I have learned that the doctor works for me and not the other way around. Please be careful. Blood tests will show any problems that may occur. I get copies of my labs so I can do the comparison and see what is going on. If you read below all of this, I updated my story with the end results - no high blood pressure and as of April 16th with the kidney doc…my kidney continue to improve which means 4 doctors had no clue of what they were doing.

Keep up the fight and good work!

shorty31 2010-04-16 11:41:50 -0500 Report

i need to talk to my doc i'm onlisinopril40mg,also metoprolol50mg,andtriam/hctz. 37.5/25mg. one is for my heart one is for my blood pressure and the other is for fluid. some time i have lower back pain my doctor did test on me for my diabeties and for that my calcium level is high now i have to take some more test but in my family most of them died from kidney failure or some type bleeding of the liver or kidney so i'm at a lost. but i will fidn out and thank you for the info.

GiGiB 2010-04-24 23:32:08 -0500 Report

Hi Shorty,
Lisinopril will also put protein in the urine. Metoprolol will elevate the cholesterol. I did the research on that to and my kidney doctor verified it. One of those meds also may be raising your calcium. Mine was elevated and since I am off all of the meds (except insulin of course), my calcium is in normal range as is my potassium and my kidney levels continue to improve much to the surprise of my kidney doc. I had mentioned to the person posting above youthat the outcome of my situation is posted toward the bottom of this. Have you asked your kidney doctor about this?
Keep me posted,

veggie1962 2010-03-11 10:53:52 -0600 Report

I'm really sorry you had to go through such an ordeal. When I was in Virginia, my PCP wanted me to take Lisinopril also (to "protect" my kidneys). I was getting some body work done at that time and they could "test" substances to see if your body could proccess it and if it needed it (I know that sounds out there, but it's been on the mark when I've been able to test it against lab results for example). When she tested the Lisinopril, she said my kidneys said it did NOT want this, did not NEED this and that it would actually strain my kidneys and not help my kidneys. Trying to be a good patient, I asked the doc for an alternative so he gave me a smaple of an ARB and when that was tested, it wasn't as bad, but bottom line was that my kidneys said they didn't need it so I never took it.

Thank God, my doctors here in Vermont and NH don't try to encourage me to take these meds (along with statins, another one they always wanted me to take in Virginia). I try to take as little meds as I can. Whenever I go to the doctor and give them my little list of 3 meds that I take (with insulins being 2 of the 3), the nurse keeps on looking at me like, "and what else…?" and I say, "That's all and that's enough" and they are always so surprised that I take so few meds. My list of supplements is much longer (and I try to take as few of those as possible too!).

GiGiB 2010-03-11 13:14:57 -0600 Report

I did not know there was a "test" to see if the kidney's could handle the drug. Not one of my doctors ever tested me. I am like you…I am only on my insulin now and all these doctors try to put me on one thing or another…"here take aspirin" was the latest one and I had to point out to her that due to my previous retinopathy, I should not take anything that thins the blood! I, too, have an incredible long list of supplements that I take and are doing the job. One sad thing is that for the last 5 years my iron has hit below the low and not one doctor addressed the issue until this nephrologist.

Keep up the good work!

veggie1962 2010-03-11 19:24:00 -0600 Report

Wow, nice to talk with someone else on minimal meds, sometimes I feel like I must be the only one. I'm almost made to feel like I'm kind of strange for not being on all sorts of meds!

BodyTalk is a form of alternative energy medicine. Doubtful if your doctor has heard of it or would find the findings of a BodyTalk "exam" valid. I know they have been valid for me. Here is a link to give you an idea of what bodyTalk is. I know it helps stabilize my blood sugars.

Hanksville 2017-03-25 14:50:32 -0500 Report

Hi veggie, I am also in Vermont and it is my UVM dr (internal med) that wants to put me on lisinopril "to protect my kidneys." I'd like to find a dr who wants to minimize rather than maximize medications—-I am on over a dozen right now. Can you point me toward one like that? Sounds like you've found one.

GiGiB 2010-03-11 19:46:45 -0600 Report

Thank you for this link. I am going to read this and talk to my new doctor. I just fired the one who put me on a water pill w/Lisinopril. According the to Lisinopril site - that was sort of a no no.

GiGi :0)

angela d
angela d 2010-04-16 09:45:54 -0500 Report

i was on that same water pill version of lisinopril i had arm leg pain they always felt heavey and i was becomin week and to tired i made my doc take the water pill part of it out and now im good with the just the lisinopril…

officervanessa 2010-03-10 20:53:49 -0600 Report

wow :( sorry to hear you had so many issues with this. i have been on lisinopril for about 4 years now… and i really like it. it has helped a lot with my blood pressure, and all of my doctors say that my blood work looks great.

im guessing the main reason your doctor didnt take you off was because the chance of an ACE inhibitor doing what happened to you is very very small. as you said, 0.02%. in the scheme of things, that is a very low risk. unfortunately for you, you were one of those 0.02%- and luckily you persisted to be taken off of it. im glad you are better now!!!

griz104 2010-04-27 07:08:40 -0500 Report

Like you i am also on Lisinopril for my Blood Pressure and it is working fine for me.. The Doctor actually told me it was more for my heart then anything and after about a year is working great and just had my dose lowered..

rankearl 2010-03-09 15:50:26 -0600 Report

hi gig i have ben on caportril?capoten 12.5 mg for almost 20 yrs for protein in my urine i was told to take it three times a day can only take it 2 times a day because it makes me nausated if i take it three times a day it also is a ace inhibitor my urine test so far have been ok due to no insurance i havent had a 24 hr urine for about 2 yrs be careful with your shoulders i was dx almost a yr ago with frozen shoulder in both shoulders it is more common in diabetics it can be short term or long term here is a test i still remeber put your arms next to your sides bend them at the elbow and bend up till they are in front of you keep upper arms at your side and pull lower arms out from your body if this is painful or you cant do this it might be frozen shoulder i cannot reach behind my head or back with my arms ok sorry i went on and on let me know if this si a problem maybe not but i was curious thanks for sharing i am going to research this more ((HUGS)) julie

GiGiB 2010-03-09 23:44:59 -0600 Report

Hi Julie,
The Nephrologist said my frozen shoulders and knee were definate signs of being allergic to ACE inhibitors. Since I have been off of the Lisinopril, I have gotten movement back in my shoulder and knee. Mine was definately the Lisinopril. Thanks for sharing with me! This scare made me realize that not all drugs work for everyone. Most people tell me, "Well I take it and I am fine." That is true…for them.

Hugs back!

GiGiB 2010-03-09 15:02:57 -0600 Report

Hi Everyone,

Well here is an update to my Lisinopril scare. I am still seeing a kidney doc., but she noted the stiffness of my joints and looked at my labs and said, "The doctor who originally put you on this should have tested you after seven days. You are allergic to ACE inhibitors and should not be on ANY at all.". I had my ultrasound appt yesterday - the arteries to my kidneys might be damaged and next month I do the lab and 24 hr urine collection. In the meantime, my PCM put me on Metoprolol - within 3 weeks I was bruising, couldnt get my fingers to stop bleeding when I checked blood sugar and my heart was skipping. I went to the Pharmacist - I told her what I was going through and she said to get off the Metoprolol immediately!!! I have been free of both meds for a month and my blood pressure is normal which means I was misdiagnosed and overmedicated.

And to think my PCM didnt want to take me off the lisinopril. I have filed a report with the FDA and hope other will step up and do the same with this serious of problem. I am glad that this does not affect everyone. I would hate for anyone to go through this.

Thanks for your support!

imsuzie2 2010-03-10 04:42:28 -0600 Report

Oh my, GiGi. Truly a horror story. Is there any relationship between the Lisiniprol and Metoprolol? Are they in the same family or are you allergic to 2 types of meds now? I hope things get easier for you, and do keep us updated. You might save someone else from a similar reaction.

GiGiB 2010-03-10 12:13:17 -0600 Report

I do not know if there is a similar ingredient. The ACE inhibitors are for blood pressure and most protect kidneys. The Metoprolol is a beta blocker - slows the heart down and works with blood pressure. I found out that with the Metoprolol that it is supposed to be one of the strongest beta blockers and is used for people who have had heart attacks - I have not had one. My ankles and hands swelled in addition to the other symptoms and my throat started to close. I am off all ACE and Beta Blockers and my blood pressure is normal. The ultrasound on my kidneys looked fine (according the the tech doing the ultrasound), I just need to make sure the arteries leading to the kidneys are fine.

Thank you for your support :0)

bobbibrat 2010-01-13 22:10:55 -0600 Report

i was added to lisinopril 2.5 mg to protect my kidneys. but after reading this i rethinking the whole idea. My mom had to have on removed on account of a stag stone that had formed inside. also was put on simvastatin cause my cholesterol was 4 points over the normal. i understand that they want it lowered cause of the diabeties. hope everything works out for you thank again for the info

GiGiB 2010-01-14 18:13:35 -0600 Report

Hi Bobbi,
The are other ACE inhibitors that you can go on as well. One doctor told me that they want all numbers lower on diabetics because it's better for us…I personally do not know how good that is. I just found out that the Beta Blocker I am on will raise my cholesterol and my doctor is not happy with my 191 reading. It just seems that I am going to end up taking pills because the pills caused a problem. your research and talk to your doctor.

Good luck to you too!

donna13 2010-01-14 18:59:08 -0600 Report

My dr also wants my numbers to be low, she was not happy with a cholesterol reading of 195, so she added another med to what I was already taking My no. is now 152. Also my blood pressure, she wants it lower than 130 over 80. Again another pill.

angela d
angela d 2010-01-13 09:46:06 -0600 Report

hi i am have been on lisinopril for 3 months mg12.5 i dont seem to see no problems other then my arms and legs hurt all the time my arms more then anything i also have type 2 diabeties

GiGiB 2010-01-13 10:24:27 -0600 Report

When my doctor put me on lisinopril, she mentioned the dry cough and upset stomach along with nausea. You might want to mention your other symptoms just in case.

GiGi :0)

imsuzie2 2010-01-09 00:58:19 -0600 Report

surprised I didn't respond when I first saw this, but took the print out with me to my primary today, and talked about it with my gastro yesterday.

When first diagnosed with T2 in along with Avandamet, doc prescribed Lisinopril to protect my kidneys. Dosage 10 mg and always has been…still doing well with it.

Gastro was surprised when I mentioned the posts cuz she also knows it is prescribed to protect the kidneys, but it is not her expertise. My primary said that the incidence of problems are low, and in 11 yrs has only had 1 patient who did not well on it. Said the patient was fooling around with dosage on his own of his BP meds and never disclosed it to the docs. He also said problems arise if patients don't drink enough water, as it tends to dry the kidneys (what ever that means).

My kidney function labs are doing really well, and I have worked at upping my water these last 3 months, and he changed my chronic kidney disease classification from stage 3 to stage 2 based on the numbers. So, Lisinopril does work if you take it and all meds as you should and tell docs of all meds, dosage, etc at all appointments. Good luck to all. S2

GiGiB 2010-01-10 12:30:16 -0600 Report

I did everything the doc said and I dont fool around with my dosages and drink plenty of water. I may be an exception to the case but it still should have been caught by the doctors. Lisinopril does not mention it protects kidneys however bloodpressure in control does and that is with any person.

imsuzie2 2010-01-10 20:04:05 -0600 Report

GiGiB, then Lisinopril is not the med for you. If you have no trust in your doctor, by all means find one you do. Your life is in the hands of the medical profession! You can do a lot to protect it, but they are the ones do order tests and meds. Good luck!

imsuzie2 2010-01-10 20:09:26 -0600 Report

GiGiB, I just went on Wikipedia, and copied this…

From Wikipedia, the free encyclopedia
Jump to: navigation, search
Systematic (IUPAC) name
CAS number 83915-83-7
ATC code C09AA03
PubChem 5362119
DrugBank APRD00560
ChemSpider 4514933
Chemical data
Formula C21H31N3O5
Mol. mass 405.488 g/mol
SMILES eMolecules & PubChem
Synonyms (2S)-1-[(2S)-6-amino-2-{[(1S)-1-carboxy-3-phenylpropyl]amino}hexanoyl]pyrrolidine-2-carboxylic acid
Pharmacokinetic data
Bioavailability approx. 25%, but wide range between individuals (6 to 60%)
Protein binding 0
Metabolism None
Half life 12 hours
Excretion Eliminated unchanged in Urine
Therapeutic considerations
Pregnancy cat. D - teratogenic
Legal status ℞ Prescription only
Routes PO

Lisinopril (lye-SIN-o-pril) is a drug of the angiotensin converting enzyme (ACE) inhibitor class that is primarily used in treatment of hypertension, congestive heart failure, heart attacks and also in preventing renal and retinal complications of diabetes. It has been compared with omapatrilat which is of similar function.

There is more, but this is what I have been told…hope it helps.

GiGiB 2010-01-11 09:29:43 -0600 Report

Thank you Suzie,
I will print this out and add it to the information that I have. I am off to see the Nephrologist to see how much damage has been done to the arteries of my kidneys. Oddly enough, all the stiffness in my joints has been slowly leaving my body. 3 years ago it started with my left shoulder and spread to my right. I couldnt even put my hair in a pony tail and so I cut it off thinking I never would again. Doctors tried to push surgery, I did p/t and nothing helped. In 3 weeks of being off Lisinopril I can now put my hair in a pony tail without help - I cant wait to see how much my shoulders improve!

imsuzie2 2010-01-12 04:38:36 -0600 Report

GiGi, I'm glad you are seeing improvement. Sounded like my sis-in-laws RA there, where the pain moved around…Keep us in the loop after your appt. S2

GiGiB 2010-01-12 16:38:14 -0600 Report

Hi Suzie,
Thanks for your support too :0). The kidney doc was not happy my general prac doc gave me a diuretic with the Lisinopril. She also had said she had never seen such a severe reaction to the Lisinopril. I agree to do some labs this week for her and will go back in 2 weeks to check not only the blood vessels going to my kidneys but also she will check the hormones that affect the kidneys. She told me to keep up the good work and to cut myself some slack and enjoy life. I am going back on Feb 3rd to see her and in the meantime I am researching for another Gen Practioner.


imsuzie2 2010-01-13 03:47:40 -0600 Report

GiGiB, would your kidney doc reccommend a new primary for you? I have gotten a lot of good docs in the past by asking the nurse at the desk (ER or scheduling) if her mother (or sister if she was older) needed a doctor, who would you schedule her appointment with? Or, who do you use, etc. While my sister-in-law and her husband were working RN's, I gave them my HMO list of available doctors and asked them to pick for me. Might be an idea for some new discussions…hmmm…S2

Pam from KCMO
Pam from KCMO 2010-01-13 05:20:12 -0600 Report

Great idea - we found the best pulmonary specialist in Dallas for my mother when we asked the RN who he'd recommend. His response: "well, we can't give out recommendations but if it was MY mother, I'd send her to…" I guess it's all in the wording…

donna13 2010-01-13 09:30:11 -0600 Report

When I was struggling with a broken wrist which was not mending well, the pt sort of "suggested" I find a new orthopedic surgeon and gave me a list of ones she thought were good. I found one who immediately saw the problem and corrected it. My primary doctor told me it was a good idea to ask RN's and PT's as they usually were more aware of the plus' and minus' of the various doctors.