Into another flare.
Posted , 18 users are following.
I have been struggling with pmr for 5 years. Have been to 2 differant Dr.s both putting me on very slow taper and it keeps coming back. I have to suffer for mths. before my blood work varifies my condition. Ive been on 3 mg since mid Jan. and have gradually gotten worse to the pt of being miserable now. Every time I hear a speech about the dangers of long term pred. use. Just dont know what to do anymore. I dont think anyone knows what it is like unless they have been through it. I just turned 61 and have always been very active and healthy. Right now I feel 90 . Waiting for a call back from Dr. due to C19 office closures.
0 likes, 33 replies
nick67069 patti52108
Edited
Patti, you are not alone. PMR treatment last on the AVERAGE 6 years; sure some get of steroids after 2 years but some stay on it indefinitely.
As you may know , prednisone is only controlling symptoms by reducing inflammation. It does not cure anything. At the same time, you cannot reduce the dose relentlessly to zero, because it is not the dose that controls the illness, it is the other way around. You need adequate dose of prednisone to manage inflammation and thus pain.
When you encounter the flare, it usually means that you have gone below the required dose of prednisone. People usually add 5mg to the dose that they flare at, so for you would be 3mg + 5mg = 8mg. Stay on that dose at least a week to clear accumulated inflammation. It depends, in your case it may require even going higher, if you were under-medicated for long time. If you recover withing 7-10 days, you can go back to lower dose directly ( no taper). If it takes longer then 10 days, then you have to taper down and find proper dose that controls your symptoms ( pain). That dose is usually 1-2mg above the dose you flared at. After you find proper dose, try to get back to active life as much as you can; you will feel better and it helps with PMR too.
Lastly, there was a study by Mayo clinic that shows that fear of long term low dose of prednisone is exaggerated. They have compared people under prednisone with same age group of people that did not take steroids and found out that there is no difference in health, with exception cataract being more frequent in prednisone group.
peggy_56092 nick67069
Posted
Take Nick's advice. I am in my fifth year of Pred/PMR and just reducing from 4 to 3 1/2 mgs. If no flare, I will remain there for a month or more. A 2017 Mayo clinic study found that 5.9 years was the average time for PMR, some for much longer. I had cataracts removed before PMR. Prednisone is a wonder drug for us.
jeannae68307 nick67069
Edited
I certainly don't know how Mayo came up with that! Prednisone is both a life saver for some and deadly for others. i took 3 mg except when had adrenal crises. It caused immunosuppression at 3 mg for me. Caused Avascular Necrosis, Sepsis, super bugs, Adrenal Insufficiency, Cushingnoid Syndrome, bone loss, hair loss, electrolyte disturbances and other issues.
So, while it can be a miracle drug for some it was not for me. Each of us is different. our individual systems may have genetic polymorphisms making it bear impossible for some people. Look up non metabolizers of cyp2d6.
As they say, not everything is good for everyone. Not trying to be contrary. As i
i stated before-a wonder drug for some-just not for all of us.
nick67069 jeannae68307
Edited
Yes, we are all different. For most of us lower dose used to manage PMR have few side effect, especially when the dose gets below the physiological level of cortisol that is normally produced by our body ( ~7-8mg). Your case seems to be unique and perhaps you should not have taken prednisone, which your body had problem metabolizing and instead use prednisolone, which does not have to be processed by liver. Also if you had suffered from Adrenal Insufficiency, you must have been on much higher dose and/or reduce abruptly your intake to cause deficiency.
Each medication has it's side effects and most effects can be minimized with changing habits or diet. Bone loss for example can be countered with intake calcium, Vit D and K2 and exercise, just to pick on one of the side effects you listed. I have been taking prednisone for 4.5 years and have bones of 20 years old ( better then average for my age group).
Since you question the study I mentioned, here is a link where you can find out about the details of the study.
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
jeannae68307 nick67069
Edited
Nick,
i wish you could see the photos of me on pred. Unbelievable, even on 1-2 mg. I switched from prednisone to methylprednisolone. I took 50,000 I.U. Vitamin D rx, once a week and K2.
I didnt stop slowly. I titrated over four years and everytime the pain got worse we took it back up to 2. My high was 3. Finally I gutted the pain out and titrated my final decline over 14 months. This time my ESR was in normal range as i did the decline down. Finally, one of my docs said we have to get you off this. we did. The bones expanded in my jaw and my face got wider preventing me from being able to smile. I lost 50 pounds but never got back to pre pred weight and i still have swollen face. i wish someone could figure this out because i still have pain. Perhaps it is the avascular necrosis or an idiosyncratic reaction. i wish someone could figure it out for me. i did the UK method Dead Slow Almost Stop.
karenjaninaz jeannae68307
Posted
jeannea,
IM CURIOUS. You mention your 'bones got bigger"- If pred causes bone loss that doesn't make sense. ENLARGING bones can be a problem with the pituitary gland which can happen regardless of prednisone. This is called acromegaly. Have you ever been worked up by an endocrinologist?
jeannae68307 karenjaninaz
Posted
yes, have one. Have Hashimotos and TSH of 6.8. Have growth hormone deficiency from anaphylactic shock where i had pituitary infarct.
nick67069 jeannae68307
Edited
This is way beyond what you read here in the forums. I am just an avid reader here, fellow PMR traveler that tries to help, but it sounds to me that you have multiple issues that complicates response to any medication. Wish you luck in sorting this out.
Anhaga patti52108
Edited
There has been a study showing that people on longterm low dose pred, as we are for PMR, suffer exactly the same health issues, no more, no less, (other than an increased incidence of cataracts) than people in a matched cohort who are not taking pred. Take what you need to control your symptoms now, and when you are ready to taper, taper at your own speed, your symptoms are key, not your doctor's schedule. Do you use a system like Dead Slow Nearly Stop?
Anhaga
Edited
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
BettyE patti52108
Posted
I'd feel inclined to copy the last paragraph of Nick's post and take it to your next appointment. If you doubled your present dose it would still not be that high. We have read on here often that the body naturally makes the equivalent cortisol that 7 mgs. provides and that low doses don't present a problem.
I have had two episodes of PMR, eight years altogether, and my only long term problem is cataract which, given I'm in my late eighties, I'd probably have had anyway.. I have been on zero pred. now for almost seven years. I do not need any prescription medicines. I do take cod liver oil and glucosamine and have done for many years now.
While on pred. I did have raised B.P and very fragile skin and sleep problems which were solved by, on my GP's advice, taking my Pred. at night which, at the time, was considered very unorthodox . I also had a hip replacement that was 100% successful and revealed that I had "amazing bone density" for my age. I was unable to tolerate alendronic acid so my only bone protection was Calceos. I wish all doctors were like the GP who saw me through but, alas, they are only human and some do not seem to believe in and allow for individual differences nor want to listen to their patients
Best wishes and good luck with educating your doctor.
EileenH patti52108
Posted
The first of these links is about a paper presented at the America College of Rheumatologists meeting a couple of years ago, the link to the original work is at the bottom. The second is a video with a rheumy commenting on what this work should mean to management of PMR.
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912
http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
PMR requires management with steroids for a median duration of just under 6 years - that is for half of patients to be off pred. And the long term effects of the low doses of pred required in most cases of PMR are not half as bad as is often claimed - the effects of pred showed no different incidence in the PMR plus pred population to a non-PMR and pred age matched population. They seem to happen with age anyway,
You say you did a slow taper? What does SLOW mean? PMR lasts at least 2 years - aiming to be off sooner than that is likely to cause problems for many without adjustments. And you are never aiming relentlessly for zero - you are tapering in small steps, a process called titration and used in many drugs but usually the other way round, starting with a low dose and working up to find the right dose - you are looking for the lowest dose that gives you the same result as the starting dose did. That is a very different thing - you need time on each new dose to be sure it is still enough, if it isn't, you go back to the previous dose that WAS enough. And wait a bit before trying again. It doesn't mean you won't get lower, just not yet.
Someone has mentioned Dead Slow and Nearly Stop:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
THAT is slow. And it works, it or a similar approach, has helped hundreds on the UK PMGGCA forums .
jeannae68307 patti52108
Posted
Eileen,
I'm glad it works for many. It simply did not work for me. I am thankfully off the stuff and happy that many people have few side effects. Even 1 mg was not a physiological dose for me. Blew me up so that i was not recognizable. Doctors' were shocked. Said it shouldn't have done that. They told me that it was under the 7 mg. which was supposedly what everyone makes and needs. But, it didn't work that way for my Dad or me. Odd indeed.
karenjaninaz patti52108
Posted
Jeannae,
Nick is right about medical issues.
There can also be drug interaction that the pharmacist can help sort out. The more medication, supplements a person takes the more chance of an unexpected response.
A person can have a paradoxical reaction to a drug: opposite to the normal response., an intolerance means no allergy just an untoward reaction and finally an allergic reaction . A drug can "turn on you" any time meaning it was well tolerated then suddenly an untoward/ or allergic reaction occurs after many years of satisfactory use. That does not mean the drug is terrible just not right for that person.
Tinapoly1 karenjaninaz
Posted
You are so right Karen. My Mom almost died from an antibiotic that she had many times in her life. Her eyes,tongue,& face blue up & she couldn't breath.Thank God the hospital was just down the street. I got lupus from a prescription acid reducer drug.It was a new low dose one but I had taken forms of that drug on & off for decades. Now I have lupus for life on top of all my other health issues. I kept taking it for a month after the unbearable itching & welts all of my body started since I thought there is no way I could be reacting to a drug that I had taken for years. My endocrinologist said had I not been on Prednisone for PMR/GCA that I would probably have gone into anaphylactic shock.