Posted , 5 users are following.
My wife has PMR and she was told initially that it was a two year disease. She is coming up on 2 years but it doesn't seem to be getting better. She is experiencing every possible side effect that Prednisone causes so that is very scary because we're not sure of the long-term or even permanent damage caused by this wonderful drug.
0 likes, 10 replies
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EileenH JWRYE
Posted
I fear she has been told an old wives tale. Recent research has confirmed what patients have known for a long time: PMR may go away in 2 years but in fact that applies for only about a third of patients and the average duration of management is actually 5.9 years.
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
Since there are over 80 listed side effects of pred it is unlikely she has them all - but I do know what you mean!
Instead of posting here, go to a PMRGCA forum, there is one on this site and also a particularly active one on HealthUnlocked. There you will find many other people in the same boat - and a lot told the same fiction your wife was told. But we can also help you and your wife cope with the downsides of pred - most of the side effects of pred can be managed or avoided when you know how.
EileenH
Posted
Oh, PS, yes, PMR does go away eventually for 95% of patients. But on in 2 years.
EileenH
Posted
Bah - oh for an edit button! But NOT in 2 years!!!
Light JWRYE
Posted
I had PMR but it did not last so long.
What "every possible side effect that Prednisone causes" is she experiencing exactly?
Have you done recent blood tests to verify them?
The most common one that can have immediate effect is the putting on weight and the moon-face syndrome. But you say "every possible" one.
So I am curious...
I have been on a low dose of prednisolone for years. Am again cutting down right now in fact. A slow business!
Michdonn Light
Posted
JWRYE, I don't believe they really have figured out what actually causes the condition. The know it has genetics involved. After being on the forum for some time, some people seem to have it go away and not come back, others it comes back after a number of years, the most unfortunate of us it just never goes away. I am in years 3 and stabilized on 4.5 mg of Prednisone, which I refer to as the Devil's Tic Tacs. When on 30 mg I was definitely Mr Hyde it was terrible. The lower dosages I feel pretty normal and lead a very normal life, which I could not do without Prednisone. Wish you and your wife good luck on her PMR journey, she should stay positive, active and try to smile. 🙂
JWRYE Light
Posted
Thanks for your reply. She has the following side effects: Moon face, weight gain, torn bicep tendons, cracked pelvis, extremely sensitive skin (Red bruises on arms, legs, hands, etc. (basically every time she bumps something ever so slightly, she gets a big red mark on her skin), hair growth on face and probably a few others I'm forgetting. Doc is prescribing Methotrexate but my wife is afraid to take it because of an even worse list of side effects. After nearly 2 years, doc said she needs to get off of Prednisone because of potential permanent damage to her brain and other internal organs. She tries to reduce the dosage but every time she gets below 8MG to 10 MG per day, she gets a flair which causes her to up the dosage again.
JWRYE Michdonn
Posted
Thanks Michdonn. Did your doc ever tell you that you will eventually experience permanent damage from taking Prednisone too long? My wife's doc told her that she needs to get off of Prednisone and switch to Metholtrexate but she is afraid of two things: 1.) Even worse side effects than Prednisone, 2.) Afraid to inject herself once a week with a needle. Doc says the Metholtrexate pills aren't effective as the shots.
EileenH JWRYE
Posted
Well for a start your wife needs a doctor who doesn't scare his patients to death with untruths. Pred at PMR doses, 8-10mg is just that, does not have long term severe adverse effects.
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
This is work from a world expert in the field.
I've been on pred at that sort of level for nearly 10 years - and there is nothing at all wrong with my brain or internal organs as a result. What utter tosh. Most of the adverse effects of pred can be avoided or minimised when you know how and forcing patients to reduce further when they get to the dose they need (in your wife's case just under 10mg) is what causes the real problems as they are forced to go higher again. Once they start yoyoing the dose it gets harder and harder to reduce. In other disorders patients take doses of about 10mg/day for many years - without serious problems.
If your doctor reckons methotrexate tablets are less effective than the shots - why doesn't he consider steroid shots since exactly the same points apply? They are also recommended for consideration in managing PMR and GCA:
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
Recommendation 5. These injections are every several weeks, not weekly. Injections have 100% bioavailability - you get the benefit of the entire dose, rather than the rather variable % you absorb of tablets.
Methotrexate (mtx) does NOT replace pred in PMR - it MAY allow the patient to manage on a lower dose, that isn't the same thing at all. The only time it might replace pred is if the diagnosis is incorrect and it is actually an inflammatory arthritis which does happen if the arthritis presented looking like PMR.
But methotrexate DOES affect organs, both the liver and the lungs can be affected and quite a few patients have to stop mtx because of raised liver enzymes.
As I say - I'd be looking for another doctor.
ptolemy JWRYE
Posted
JWRYE I think it may be your wife's doctor who has got permanent damage to their brain. What absolute tosh. My parents' neighbour took steroids all the time my parents and she were neighbours which must have been at least twenty years if not longer. She always seemed pretty perky except she did tend to talk a lot. I don't think that was because of the steroids though.
JWRYE ptolemy
Posted
Thanks ptolemy and all the other PMR folks that have sent their thoughts and suggestions. I appreciate very much your taking the time to reply to my questions and observations.. This is very, very helpful. I will be attempting to introduce my wife to this wonderful support group.