Lisinopril withdrawals - how long can they really last?

I too have had terrible problems with Lisinopril. My case was I was dx with hypo thyroid which I now believe was incorrect and the levothyroxine I beleieve  gave me  low grade high BP  In short between Levothyroxine, Lisinopril, and amalodipine my body was quite literally  at war with its self. I didn't realize it was the medications until one day when life was quiet it came to me I had been absolutely well prior to starting the medications. I hesitated to go off the Lisinopril because of rebound effects reported, but frustrated when I was having some nagging side effects I prayed and took a leap of faith. I am off everything now 2 months and I still get a phelgmy throat that intefers with swallowing  not every day but at least 1 x week ,joint  and muscle pain that is crippling. I alternate with ASA and something called Bigeloil linment, heat and ice. I also have muscle weakness and loss of stamina and am hoping if I am patient and persistent with myself I can regain my fitness. It has been 3 3/4 years of this hell and it has been frustrating. It is good to hear that maybe I haven't reached an end result

My sincere sympathy cathy 35794...no one should have to suffer with these strange symptoms because of medications that aren't good....you're right about the body being at war with itself. I thought I was dying this past April with the sudden onset of  symptoms from one sided numbness that switched daily from the left to the right and then other symptoms like chest pain...I  I got tested for Lyme disease too to rule that out.  I told the doctor to switch the meds so he prescribed amlodipine and hydrochlorothiazide and I ended up in the ER that day with very very high BP and learned I had a sodium deficiency which can cause some strange symptoms so  make sure your blood work is all okay...I read that Lisinopril can cause salt deficiencies even though it doesn't tell you that in the pamphlet.   I was watching my salt intake  though and apparently I wasn't getting enough daily salt and it takes it's toll on you; very weird symptoms and very dangerous if too low...I felt like I was having seizures and possibly I was because low sodium can cause that as well as muscle weakness plus other symptoms...I really want to stay away from all medications; probably should report these reactions/side effects to the FDA because I'm reading that many are suffering with Lisinopril in particular. Plus my liver enzymes went up and my stomach area was bloating from that....you should try and use a stationary bike or elliptical to strengthen your muscles even though it's painful and that's what I do and it helps a lot...I have to push myself, but it's worth it...get blood work done though to make sure everything is normal...I have low vitamin D and did feel better after taking vitamin d supplement for awhile; it affects the muscles and heart they say...my body has no tolerance for prescription meds and a lot of people are like that. I'm glad you stopped all the meds and I'll do the same soon...it's definitely the medications that caused these terrible side effects/symptoms.  It's been going on I had to ween off of the metoprolol (beta blocker) because it caused my heart rate to do strange things that it never did before...very serious drugs that can harm instead of helping and I don't think doctors are aware of this...Good luck and don't stop working on the muscles...  

Thank you for your very kind and thoughtful reply. The problem we all have is that at first we never suspect it is the medicine we are prescribed us that is poisoning us. Because my situation was complicated by thyroid issue to begin with, I read now from time to time on both issues, but I came across something on a site www.verywell.com yesterday while researching the sources of our medications cause I have seen so many references as to where your drugs come from. Almost none are made in the USA no matter where the company that distributes them is headquartered. " Many doctors do not recommend their thyroid patients take generic levothyroxine from any manufacturer. The reason is that levo. drugs including generic and brand names  are legally allowed to vary in potency from 95 -105% of the stated dosage. When you are taking generic Levothyroxine, refills can be from any manufacturer which means each refill of a stated dosage can fall anywhere with in that potency range between the slightest variation to the greater which interfers with effectiveness". In this site this was part of a report where Mylan the drug Manufacturer had been investigated . It struck me that that is why so many people are messed up cause all the drugs are like this. When I read of super happy and defensive people I have to wonder if they just plain like the side effects. I have found that Levothyroxine is all made in main land China by a ton of chemical companies, Lisinopril is made in  India by 27 companies with no less than 74 names and Amalodipine  is also made in India by 106 companies under 201 names. I sure have been naive or maybe plain stupid. The standards and health conditions in these countries simply don't exist. Then I think back at all the hub-bub about American's buying their Rx meds from Canada! None of the drugs sold in the USA are made in the U.S.A. My Rxs had come from a U.S pharmacy, but no where on the bottle does it state what company actually made then . You couldn't sue anyone if you wanted cause who would you hold accountable?  I liken it to buying drugs off a dope peddler! I am angered, but also at myself and USA oversight that this all could be going on and so blantantly. and so legally. Again thank you MaryBeth

Hello MaryBeth08170...Your comment is very informative regarding low sodium in the blood.

It IS possible that the Lisinipril is not the culprit...it may be a CONTRIBUTING factor, but not the actual

culprit. Diuretics flush excess water & salts from the body, thereby helping to lower blood pressure. If too much is flushed, it certainly can cause a sodium depletion. Watching your salt intake certainly is a good habit to form. Also if a person drinks too much water...that can contribute to the problem as well. 

Blood sodium is an electrolyte..a very important one, as is potassium. If the level becomes too high, the person can experience symptoms enough to scare the socks off of them. The same if the levels are too low. There's a happy medium with which the body works. Some will experience a fluttering sensation in their chest, or feel as though the heart is racing. The heart can be very healthy, but low levels in the blood or even high levels in the blood can cause these sensations. 

Your low vitamin D levels can cause weird symptoms as well. My vitamin D was classed not as deficient, but "INsufficient", meaning while I was below the bottom number a little, it wasn't to the point of causing problems. So, my doctor instructed me to take 1000 I/U of vitamin D daily...then increase the dosage to 2,000 I/U come winter months. The last blood test a few months ago, I was just 1 point from being in the normal range. With those readings, the doctors don't do anything about it, because what's normal range at one laboratory, can be abnormal in another. This is when he told me to start taking the 2,000 I/U daily. 

Regardless of the medication one is taking, it's always a good idea to have a blood test every few months, just to keep tabs on things...especially those on a diuretic. Remember, Potassium levels are very important as well as sodium, etc.etc. 

Hope this has been of some help to you.

Hi mike92384,  I  only took 1 dose of a diuretic that one dreaded day, but I'm aware now that they can cause salt deficiencies.  I will never take a diuretic again though. Lisinopril  also interferes with memory recall which makes me worry especially for the elderly and those who can't defend themselves...I read that renin is something in our bodies that can be tested by doctors to determine which blood pressure medications will be most helpful instead of doing it by trial and error..I'm all for the natural ways of keeping blood pressure at good levels.  I need salt, but will watch it and will exercise, lose the excess weight and eat more fruits and vegetables...I know the Lisinopril and metoprolol helped contribute to the 20 pound weight gain which I believe also raised my blood pressure because before that  my BP was averaging 130/80 at the doctors which is pretty good for me; age 58...we have to be our own doctors and be as informed as possible...I saw I was steadily gaining weight when at the doctors and just didn't pay it too much attention until it was too late and doctor and Physician assistant  didn't think too much of it...Live and learn and an APPLE A DAY KEEPS THE DOCTOR AWAY...I had an apple a few days ago and it was delicious...thanks mike92384...

Mary Beth08170...One dose of a diuretic won't make any difference to the salt levels in your blood.Some people think foods with a high salt content influences the blood salt levels. This is only true to a degree. 

There are many factors, but being careful goes a long way. 

I wasn't aware of testing renin as a means to help determine which blood pressure medications would be best suited to the patient. I for one would be extremely interested in this. 

Your bp reading of 130/80 is good..especially for your age. A lot of doctors would not put anyone on bp medications with a reading like that, especially if the reading was consistent. 

Metropolol ...well I hated that med. It gave me the most horrendous headaches to the point where it truly frightened me, so I had my then-doctor take me off. About 2 1/2 yrs ago, he prescribed Atenolol which as you may know, is another beta-blocker. This one did not cause the headaches & I've not had any ill-effects from it. I asked a pharmacist friend of mine if there was a difference in the two, & I was informed that Metropolol is fat soluable, whereas Atenolol is not, & this most certainly can make a difference. 

The doctor I have now (whom I went back to...long story)...truly likes Coversyl. It is actually a form of Perindopril. When he learned that I was taking the Coversyl Plus HD, he said to me.."that's a good medicine". 

I wish you luck...please let us know how you get on.

Hi mike92384, thank you for all the information; always helpful to hear about another persons experiences.  In reading on the internet I read that renin and aldosterone are the big players in blood pressure and regulating the salt and potassium, etc with blood pressure so the blood can be tested by a doctor to see the levels of both and maybe more and this was written by a doctor so it said.  The doctor on the internet also said that most doctors do not test the renin and aldosterone though which would show the root cause for a persons high blood pressure..I find this interesting and will ask the doctor about it myself.  My blood pressure can jump extremely high if I get upset or become fearful and usually when around the medical people;  dangerously high so I think I should take BP medication as needed only and I see that this is looked upon as tabu by doctors but I think not...our bodies do become addicted to BP medications and therefore so do our minds/brains.  I'm glad to hear about atenolol not giving you any bad side effects and the only reason I took metoprolol was for my rapid heartrate...metoprolol caused muscle weakness, muscle numbness and pain thru out my body as well as swelling and other side effects..I now use deep breathing to get my heart rate down and it does work for me; it takes patience and a few tries, but it works...i'm going to check into the blood pressure medication you talk about and i'm always interested in any blood pressure medications that work for people.  I heard Lisinopril is the 3rd most prescribed medication in the united states and I know so many are suffering with this medication from what I read on the internet...serious problems with the med like coma and worse and the inability to walk...very scary side effects; I think it should be banned personally...please research the renin and aldosterone online as I would hate to give any wrong info and or check with your doctor too...thanks mike for the all the helpful info...good that you have friend in the pharmacy business...take care

MaryBeth08170...reading things on the internet can be extremely misleading, & could cause worry because we don't know the qualifications of whoever put the article on there in the first place, or it could be badly out of date. My Dr. says that if anyone wants to look up health information on the internet, the best places are the Mayo Clinic and New England Journal of Medicine. Truly, I have never heard of Drs testing for renin & aldosterone to try to determine the cause for elevated BP. Perhaps these things are already in the blood???? By all means ask your doctor about this.

When you become upset, worried, or fearful it is the body's natural reaction to do certain things, & the elevation of blood pressure is no exception. Once we've settled, the numbers will come down, but of course it's not instant. Being at a doctors office or any other medical office can raise bp levels as well, & doctors are very well aware of this. This is called "white coat syndrome"..& is more common than you think. A person's readings can be as high as 20pts more just because they are in the doctors office. Whatever you do, do not take your bp medication as needed. It's not a good thing to do at all. 

When stopping the medication, this puts you at risk for rebound...meaning the numbers will jump UP.

Again, I've never heard of any doctor telling a patient it's ok to take them when needed. You don't know when you need them. Are you going to monitor your bp 24/7??? 

I will share with you what I take for bp....Coversyl Plus HD...Atenolol 50mg/day...Doxazosin 1mg/day.

Your doctor will know what the Coversyl Plus HD contains. Remember that Coversyl is in the Perindopril family, but according to my doctor the Coversyl Plus HD is a "good medicine". I put that in quotations, as these were his exact words. My doctor also told me that years ago, it was common to prescribe an ARB & ACE together. An ARB could be e.g. Valsartan. An ACE could be Perindopril.

Health Canada had declared this should no longer be practiced as it was discovered that patients taking both classes of medication at the same time was lowering the bp far too much. A patient most certainly can take a Calcium Channel Blocker, i.e. Norvasc, an ARB or ACE., but again not an ARB & ACE together. 

I'd be most interested in whatever information you get from your doctor. Share with him/her your idea about taking the bp meds when needed. I'd be most interested in his/her response.

I can already tell you his response mike92384 and it would be NO...but I don't listen to everything a doctor tells me to do because some information they give is not correct...like after going by ambulance to the ER from the diuretic I took and the other new med amlodipine the oncall doctor said you didn't give the meds time to work...I said what do you mean:  I was losing consciousness and my heartrate felt like it was dropping and I just about passed out and you want me to take it again ?  and so I learned that I am one person who should not take a diuretic because apparently my sodium level went down due to Lisinopril I believe...doctors will always defend medications because it's the biggest business in the world basically and they went to school for medicine...medicines don't always work and can make people very sick...I ween off of most meds but the Lisinopril i'm still taking at lower dose due to side effects or reactions really...one serious side effect is it appears to labor my breathing and I told this to the doctor and his office and he isn't doing the right thing so I told the office who took 4 weeks to call me back I am not sure I want to come back to an office that doesn't return my phone calls...I have to find someone else I think but i'll keep this doctor for what I know won't  hurt me...they're incompetent and negligent everywhere I go and i don't like incompetence when it comes to my physical health...I have had some not so nice doctors recently mike92384......maybe a nurse practioner or naturopath would be better for me...my niece is a nurse and she said that Lisinopril had a lot of side effects when she worked in the hospital on the cardiac floor so we as patients know what we're experiencing with medications...I probably clash with doctors because I believe he gives me the information and then I decide if I want to take his advice because I know my body...oh well, hope I find a nice easy going open minded doctor...good health to everyone including me...

Hi cathy35794, thanks for writing and I know exactly what you're talking about.  I tell the pharmacist I have to stick to the same manufacturer if the med is okay and then out of the blue i'll get a different looking pill; different manufacturer and there are big differences for sure in the potency and quality of the medications...the manufacturer's name should be right on the pill bottle and the pharmacy knows where the med came from whether India or elsewhere...if a med makes someone sick with life altering medical conditions I think someone has to be held accountable and make amends to the patient who suffers.  I had a bad reaction to a medication with blue dye in it and it was very bad reaction; wheezing, weakness; throat swelling, dizziness, etc...I called the manufacturer and told them what happened and I said maybe i'm allergic to the blue dye and the person said there's no blue dye in the pill and I said yes there is; the pill in blue...so now I can't take and won't take blue colored meds or red colored meds or even supplements as I've had reactions to these too...I get really mad too especially with these blood pressure medications and other life altering medications such as what you took for your thyroid...it's our life afterall...you can call the FDA; they're suppost to keep checks on all medications everywhere and they want the adverse or dangerous reactions so they can put in recall if necessary or maybe even ban the medication...it seems to be getting worse with the medications being of poor quality or contaminated as I have read per the FDA's reports.I get alerts from drugs.com on any FDA recalls because I want to know about them...microbial contaminations for so many medications; this is serious and it's very scary to think a bacteria is living in the medication I'm taking...Before I knew about microbial contaminations I would say there is a virus living in my pill bottle and low and behold I get a email from drugs.com with an FDA recall on a medication because of dangerous microbial contaminations....and one side effect is flu like symptoms; wonder why ?  I've had it with the whole thing too...just have to keep our heads and be cautious...good luck again and you're welcome...wishing you and all good health...

Thank you for taking the time to respond in such detail. Drugs.com sound famliar, but I am not sure I am on their e-mail list. I rationalized all my side effects for about 3 3/4 years out of stupid trust and when I had been so crippled and disabled by the war that was going on in my body. I was so bad off and disgusted with myself it finally came to me I wasn't sick in any way until the Doctor said I needed levothyroxine. I was reassured  by my doctor I had needed the thyroid med so badly that my body was adjusting. I trusted and feel like such a fool because by the time I came to my senses I was then on the 2 BP pills so little wonder I was so screwed up. I am 2 months off the levothyroxine which I don't believe I ever needed and the amalodipine  and lisinopril about a month and a half. I have lingering side effects and don't feel as though I am home free . I had never had any problems with my BP prior to that time, so I am hoping and praying I will be able to restore my health, but it frustrates how we can clean up this mess in healthcare cause very many people do need treatment. In the USA with CVS buying up Aetena Ins. (sp) it is getting scary  for all of us.

Hello cathy35794...I was reading your post, when a certain word jumped out at me. That word was "Amlodipine". There are many posts in the forum about this bp medication and they are not complimentary. People have experienced so many side effects, it's unbelievable. It is the generic of Norvasc. Some will argue that the generic is as good as the brand name, but many will say it is not. I get the idea that my doctor doesn't believe they are the same either. The fillers may be a little different, & that difference can bother some people. 

A few years back I was prescribed Amlodipine 5mg by my then-doctor. It didn't really control my bp, so he doubled the dosage to 10mg. My feet/ankles & legs just below the knee swelled so badly, I had to stop the Amlodipine. Swelling is a very common side effect of this drug. The 5mg did not cause the swelling, but didn't control the bp either, at least not after several weeks. 

I hope you didn't take yourself off the bp medications. You truly should get back to the Dr. Please let us know how you get on. There are other bp medications that may agree with you, i.e. Coversyl, which is an ACE just like Lisinopril but works very well. I asked for & was prescribed Coversyl Plus HD by my then Dr. My current doctor whom I went back to (long story) said, & these are his exact words...."THAT's a good medicine". Also, there are ARB's, e.g. Irbesartan, or Valsartan. Just because one medication isn't working or is making  you ill, doesn't mean you are stuck. 

Yes, but I had elevated BP because of the Levothyroxine. I am off all of them and all the side effects are slowly going away. I appreciate people have needs for these pharmacy chemicals, but I am pretty sure everything including low grade hypertension was a side effect of the levothyroxine. These drugs should not be taken if not needed cause they will trigger a heart attack and /or congestive heart failure. it is in the literature buried. My big beef with healthcare is side effects of drugs should not be treated as a symptoms and more pharmacy chemicals added. Mike thank you for your contribution. I am grateful for everyone who takes the time. I have learned a lot  that I was previously naive to. I just wish my doctor who I had trusted had as much interest as you . I will go back, but I am never going to allow my self to become a cog in the healthcare wheel again if I can help it

cathy35794...You're most welcome. You have every right to tell the doctor you do NOT want medications to cover up side effects. That's ludicrous. We have the right to say yes or no to things., & we certainly have the right to ask questions. If any doctor were to say.."don't worry about it...I'm taking care of things"., then that person needs to find a new doctor. WE are THEIR employers...not the other way round.