My "recovery story" from the misery of Amlodipine
Posted , 46 users are following.
I apologize in advance for the lengthy post. For a very long time, I had been suffering from a lot of intense aches and pains in my joints and muscles and was not able to get any proper diagnosis for it. I was beginning to very worried that I had some serious illness like cancer. Thanks to the posts in this site, I was able to pinpoint amlodipine as the source of my misery. I shall try to put as much details as I can regarding my own experience in journal form, in case it becomes helpful to others.
Background: I am male, 40yrs old, former competitive swimmer and in good shape (apart from the hypertension which is genetic). I was placed on 5mg amlodipine after being diagnosed with hypertension 6 years ago. 5mg seemed to work fine with no side effects. In July 2016, I went to our local clinic due to a serious case of the flu. The GP on duty was not happy with my 130/90 and said that I should increase my dosage to 10mg. Thinking nothing of it, I complied but did not consult with my specialist. In hindsight, this is when my symptoms started to appear.
Symptoms: It first started with muscle pain in my left forearm and joint pain in my left shoulder. I assumed that this was due to carrying my newborn baby in the same position for hours on end. These disappeared but then I suddenly started suffering pain in my hands and feet as if someone had taken a hammer to them. I felt like my bones were crushed. In December, pain in my knees and elbows followed. My knees felt swollen at the back while my elbows felt as if there was constant pressure on my funny bone. There wasn’t any actual swelling or inflammation, just the sensation of pain really. I then started to have muscle spasms at the beginning of this year. The spasms and twitching were almost constant at night.
How amlodipine became a suspect: After researching everything from arthritis to cancer, I stumbled across this site and the symptoms posted seemed similar. So I figured, what the heck! Let’s give this a shot. So on 29-Jan, I decided not to take my medication and felt some relief almost immediately. My “recovery” is detailed in the journal below:
Day 1 – 0mg. By the end of the day, muscle spasms stopped completely. Have not had any ever since. This was my first clue that amlodipine may be the culprit. Pain in my right knee completely disappeared with pain in my elbows and left knee lessening and not constant.
Day 2 – 2.5mg – Afraid of rebound hypertension, I decided to still take 2.5mg. Pain in right elbow, completely gone. Less pain in left knee and elbow. Developed slight occasional shoulder pain though. Pain in right thumb and toes.
Day 3 – 2.5mg – No more knee and right elbow pain. Though pain in left elbow remains but significantly less. Foot and toe pain greatly reduced.
Day 4 – 5mg – Started getting a headache and uncomfortable feeling in left arm so I thought I could be getting hypertension again so decided to take 5mg. Slight pain in left index finger and right thumb. Slight occasional shoulder pain. Joints in elbows, shoulders, knees and ankles started popping and clicking.
Day 5 – Back to 2.5mg – No more pain in elbows and knees. However, shoulder pain increased and developed lower back and hip pain. This was after I took the 2.5mg at mid-day. Also developed a stomach upset about ten minutes after taking it.
Day 6 – 2.5mg – No knee and elbow pain. No pain in fingers and toes but have feeling of stiffness. Joints still popping and clicking. Shoulder pain increased. Felt like stabbing pain. Something new is that the front of my neck felt sore and muscles felt swollen.
Day 7 – 0mg Since it was the weekend and expected less stress, I decided to try and not take amlodipine. No pain in major joints. Neck and shoulders felt stiff and sensation of neck swelling still there but not constant.
Day 8 – Still 0mg – Felt almost normal. Neck soreness was there upon waking but became negligible towards the afternoon.
Day 9 (today) – Pain free!!!! Still some tightness in the neck from time to time but nothing like it was in the past days. In fact, it is non-existent as I type this.
Observations – Symptoms seem to get worse before they get better for each joint. Improvement also seemed to start from the bottom and progress upwards with pain in the upper joint getting worse or appearing just as the bottom joint was feeling better. Example, as my knees were getting better, my left elbow pain got worse; and as my elbows were getting better, I started to develop pain in the shoulders and neck which I did not have previously.
Conclusion – I am not sure if I shall be getting off amlodipine completely. I actually plan to take 2.5mg again for a few days and work my way back to my normal 5mg dosage. I did not have any side effects then. I do plan to go back to my specialist but he only comes in on weekdays and it is a problem for me to get time off from work.
Again, apologies for the length of this post but I do hope that it is able to help someone.
9 likes, 89 replies
elke04062 ramvin
Posted
Hello, there,
Just read, with interest, your story. For the time being, as a fellow sufferer in puncto calcium channel blockers, I fail to understand why, at the outset, the GP changed the dose when your RR was only 130'90. OK the diastolic is a bit high - but to put you on 10 mg! In my humble opinion, your BP was good enough!!!
To your information only: I have tried them all, and they all make the sick.
All the best
Elke
ramvin elke04062
Posted
Hi Elke,
You are right. In hindsight, my bp wasn't that bad. But as someone had said on this site, some doctors are just obsessed with the 120/80 figure. I guess that GP was one of them. I also did not know much better at that time as I must admit, I was taking my bp for granted since I was fine and problem free for several years. I wish I had come across this site sooner so that I would have been better informed.
I do hope you find medication that would not make you sick.
All the best to you too!
carol65046 ramvin
Posted
YOur post was very helpful - don't appologize. I just started 2.5 3 weeks ago Amlodipine. I needed to be on it. BP was skyrocketing and I am having secondary health issues as a result. I'm fit - stressful over the top job - genetic prediposition. I have had vivid dreams and so many past memories have immerged. Nothing unpleasant at all - just notable. I know this is the medication. am reading this string of emails with great interest. I am not sore anywhere - but I am so sleepy that it is nuts. if I'm not working - i want to fall asleep into a deep nap. I am allowing myself fhis luxery for a bit of time as I adjust. I do not want to gain weight. i don't have a choice - i have to adress my high BP...it has gone on for too long. I got a bad cough from Lysenaprol and the water pill made me really depressed...so here's hoping that amlodipine will work for me. thanks agian Ramvin.
carol65046 ramvin
Posted
chris21802 ramvin
Posted
My goodness you have gone through so much. I am Expo same things mine is always in my lower back muscle spasms terribly painful .Am in 5.1/2 a day which was recently increased I've got Dr appt tomorrow I am.pulling myself off I can take the spasms any more.it's hard to walk or do any normal functions.I was in tears today because it hurts.I'm.glad I am a member here.I'm 61 female thank you
ramvin chris21802
Posted
Hi chris21802,
Yes, the past several months prior to quitting Amlodipine definitely were quite literally hell for me. Worse than the pain was the feeling of dread that something I had something seriously wrong. Blood tests were normal though so there really was nothing to go on. So I am greatly relieved that most of my symptoms have disappeared after stopping Amlodipine.
I am sorry to hear about your troubles. Hope things work out well for you and that your doctor is able to give you a better alternative that won't cause such misery.
denise08783 ramvin
Posted
I've been on Ramipril for 4 years with a steadily increasing dose, for the last 18 months 10mg. A couple of weeks ago I went to pick up my regular prescription and the chemist suggested that it may be worth taking my blood pressure as I'd been on the same doseage for a time. Okay, no problem... 2 readings later 199/130 and 182/124 it was suggested (quite rightly) that a visit to my GP wouldn't go amiss. Anyway GP visit and pressure is 178/114 so I've been prescribed Amlodipine 5mg to take with the Ramipril. 3 days in and I'm already suffering the headaches, stomach pains and vague/vision disturbances - do I stay the course for a couple of weeks until my next meds review or do I stop the Amlodipine now (I've had no side effects with the Ramipril)? I'm also concerned about Deborah's post which suggested that its banned in other countries.
carol65046 denise08783
Posted
I am off of it. The final straw was my hair falling out and gaining 5 lbs in a month. my list of side effects is just horrid. the pain that I feel in my body remains. I can't give you medical advice. But I'm sure glad I'm off. I was so tired I could hardly move and I could not have a bowel movement either.
lily65668 denise08783
Posted
Hi Denise (and Deborah),
I've never been on amlodipine - and after everything I've heard I wouldn't go on it anyway if my BP situation got any worse! However, I feel I must question the statement that it's been banned in some countries. This chestnut came up on these boards about a year ago, when someone asserted that it had been banned in the Netherlands. This then escalated to people saying it had been banned all over continental Europe.
I hold no brief for amlodipine or the major drug companies but don't like to see false information being disseminated, as it can scare people unnecessarily. As I have a knowledge of several European languages, including Dutch, I researched the banning claim. It appears to have originated from a report saying it had been taken off licence in the Netherlands (i.e. could now be produced in generic form) which had been misinterpreted as saying it was banned. I could find no evidence that it had been banned in any European country.
I don't know what the situation is in the Americas, Australia, NZ etc. I believe Margaret said she was in Canada so she might have some input to this one.
It sounds like a rather nasty drug to me but I know there've been quite a few people on these boards who say they've been on it for years and it suits them very well.
I hope you find a solution to your problem and will soon be feeling better.
carol65046 lily65668
Posted
lily65668 carol65046
Posted
I think it's a case of horses for courses, as with most medications.
My mum was on verapamil - one of the earlier CCBs - which also had quite a bad reputation in some quarters. She took it for the last 14 years of her life (dying at age 89) and never had any side-effects at all, except when an over-zealous new doctor doubled her dose because her BP was 135/80 on one occasion. She then started getting swollen ankles, muscle pains and all sorts. I took her back to the surgery and insisted we see a different doctor, who restored the original dose, and she never had another problem with it.
But there's no reason why you should stay on a medication that doesn't agree with you when there are so many alternatives your doctor could try.
carol65046 lily65668
Posted
good reminder -I'm not going to let that doc incrrease moms amalodepine thats for sure
lily65668 carol65046
Posted
I don't know what it is with some GPs. They get an idea in their head that 120/80 is some kind of gold standard and apply it across the board in spite of recent evidence that we need to be more flexible in elderly patients.
I was lucky to stumble across a real treasure after a house move four years ago. He's resistant to medication in general unless he feels it's absolutely necessary, which makes me much more likely to trust him and take his advice - i.e. agreeing to use a steroid inhaler for my increasing asthma when he read me the riot attack about the dangers of COPD even in lifelong non-smokers! So far he's happy to watch and wait over my rising BP, as long as he sees me every six months.
carol65046 lily65668
Posted
you are fortunate. I don't know WHY I took this darned med - I knew better.
margaret90930 ramvin
Posted
I would say 130/90 is not high taken in the surgery. White coat hypertension is well recognised by most doctors and account taken of it. I bought my own blood pressure monitor and don't take any notice of what the surgery says because at home my BP is always "normal".