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.
PATTI, It will be 5 years for me in NOV. I taper 1/4 mg at a time and now at 5mg. As we get below 10mg the side effects from pred decrease. I even notice less tendency to bruise and my weight is the lowest in years. The symptoms of flare are similar to going down too fast on pred. Some practices have a pmr patient stay many months at 5mgm. You will get excellent feedback from other fellow travelers here.
Hi Patti
I 'have' been through it. And I'm still tapering (lost about 1/3 of my hair.... common in tapering... grows back I'm told.... fingers crossed.)
As soon as I'm off the pred.I'm going to go on CBD (medical hemp), with an MD who works with this. I'll let you know how it works out.
Hi Patti, PMR is not cake walk. I been on my journey 4 years, low point in a wheelchair, unable to walk. The forum help and encouragement helped me get back on my feet. I have not been worried about taking Prednisone, it has allowed me to have an almost pain free normal life. Did I gain weight, yes. Was I irritable, yes. I am a diabetic, was it hard to control my blood sugar, yes. I now have cataracts, will have an operation when the pandemic slows down. But I have been able to live my life mostly PMR pain free with a few inconvenience, because of Prednisone. I learned not to reduce if I have any PMR pain. If I have a flare increase and reduce very quickly. Think that the pain is only a symptom of the inflammation, we most control the inflammation. That is the KEY, control the inflammation and be pain free! Good luck. 🙂
Patti, I used methylprednisolone for 5.5 years and almost died while using it. I developed many complications. No doc would listen and i moved to another state hoping to find new and better doctors. One day a doctor in my new state said that i had a window of opportunity to try to titrate down and get off the steroid. I began the long and difficult journey dropping dose ever so slowly. It took me the better part of a year. Like you, I was on 3 mg and stuck. I used Dead Slow, Almost Stop method from the UK. Although the pain was horrific in titrating down, I am finally off it and ever grateful. i still have significant pain and am using other peer reviewed herbs such as curcumin to help with the pain. Although helping some, it does not give me the relief that i had with the pred,but it is worth it for me to avoid the deadly complications i faced. i have avascular necrosis, and had adrenal insufficiency and many other complications from the pred. will never do again. i hope this helps you. This is a tough and lonely journey and there is strength in numbers. Stay strong and you will get off it if this is your desire. i, like you, have severe pain every minute of every day and have gone from extremely active to sedentary with pain but i will prevail and get this inflammation down. Hugs. Jen
I'm 68and have GCA and PMR since Nov 2019. I'm on 25mg prednisolone but lower to 20 tomorrow, i cant get lower than 20 when my flares go right up with the GCA so hoso cons put me on Tocilizumab alongside steriods. if your not getting it under control you need to see hosp Rheumatology to get a plan sorted by the professionals in their medical field. Not sure where you're based, I'm in UK so medical treatment may be very different here to where you are good luck. x
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.
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?
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
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.
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.
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.
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 .
Actually different forms of pred seem to have different side effects. Perhaps you would have done better with prednisone or prednisolone, not the methylprednisolone? I only bring this up not to disagree with you that pred is a serious drug and can have serious side effects, but really to suggest to others reading this thread that there are alternatives. I think there's not much to choose between prednisone and prednisolone, except that the former has to be processed through the liver to make prednisolone, which could be an issue for some. But having followed a couple of forums for several years I have noted that some people react very badly to methylprednisolone, while others do fine on it, and maybe they didn't on predniso(lo)ne, and vice versa. Agreeing with your comment that we are all different. Anyone suffering serious side effects from one form should consult with doctor about trying one of the others.
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.
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
I lost 95% of my thick ,long hair a year ago,after a year on Prednisone & now have 5 new inches of hair for which I am grateful but after 50 years of having long hair it is just one more adjustment of looking at a stranger in the mirror,not only from having short hair but I have always been thin so to gain 55 lbs. is the most devastating thing to me since I eat like a bird so it's not like I can diet since I eat too little as it is. It took me 18 months to get from 7mgs. to 5mgs.but since I am loosing my immune system from the Prednisone & almost dying from 2 flus in just 3 months with my lungs filling up so fast that I felt like I was drowning my rheumatologist said I had to get off the Pred. I mg at a time. I body couldn't handle 4.5 or 4.75mgs for 3 months so back to 5mgs. .At 5mgs.for over a year now my skin is still bruising & tearing easily but half of my calf muscle tore off the bone from just getting up from the couch & taking one step. I also had 2 surgeries & my doctor went to sew up the insides & the stitches just tore through my tissue so my doctor did micro surgery & sewed me from the outside in. My doctor put me on daily diuretics & I lost 15 lbs. in just a month since I couldn't even get my shoes on but still up 40 lbs. & I worry about my kidneys being on diuretics on a daily basis. If I go off of them for just 4 days the water retention is so noticeable so fast. In reading other posts I now realize that I was having bad signs of GCA & had no idea it was that & I didn't even tell my rheumatologist. I had a severe temple headache for a week or 2 , worse & more severe headaches than normal ,& also bad pain on the top & sides of my scalp. All that from just trying to go down a quarter or 1.2 mg.
Have you & your doctor been monitoring your C Reactive Protein ,CRP, that shows how much inflammation you are dealing with since we not only are battling severe pain but we are at high risk for a heart attack or stroke with a high CRP from the internal inflammation ?What I would give to not have PMR/GCA because of all the bad side effects from Prednisone but at least I can walk with Prednisone & hopefully won't go blind, or have a heart attack or stroke & I have learned Prednisone is the only drug to help us . Best wishes on your herb supplement ? I wish we could all take that but I don't want to end up in a wheel chair from the excruciating pain.
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 Dr. Gundry's 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.
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?