My mother has polymyalgia very severely, can't walk; has had it for several years now. It went undiagnosed at first but was initially treated successfully with 15 mg pred. once diagnosed. After a while this was reduced gradually to 5mg but the pain and disability returned very soon.
Since then she has been up and down from 5mg to 10 mg like a yoyo, always over a period of several months, as prescribed by her specialist. At 5mg she is in huge distress and unable to function. At 10mg she is just about able to function but still in masses of pain and very disabled. This up and down of the dose has been going on for two to three years ever since the initial period when she was well on the higher dose. The specialist won't put her back higher than 10mg and wont let her stay on 10 mg.
It's a complex picture as she has no thyroid function and is on the max dose thyroxine,which is also always being adjusted, and has osteoporosis.
The specialist decided not to try her on the other drug that has been mentioned on this forum. I don't know the details of that decision.
It is hard to get any information from my mother about what the specialist says as she doesn't like to discuss medical stuff.
Having read up on this condition I am wondering why she seems to need a higher dose of pred. than is usually successful and also why the condition has gone on so long when 2-3 years seems usual. I am wondering what the outlook is.
It is the pits. Bad enough to go though it yourself, must be awful to watch a loved one suffer. Speaking only for myself- started at 20mg-for three months 10mg in the am - 10 mg in the pm. I have read of some who started much higher dosage. 5mg is like a maintenance level- not a cure level. And how fast was the decrease0that also can be a pain factor. Might start with that. She is lucky to have you-you must be a real blessing
Griffin, that is awful for your mum and for you. I can relate to the up and down from 5 to 10 like a yo yo, as this has happened to me, but in a much shorter timeframe, and I have not suffered pain and disability like your mother has. I don't know how your mother's tapering went, but it should not have been faster than 1mg a month - I can't even cope with that, and am going down at 1/2mg a time. There is SUCH an enormous variation in initial doses prescribed. Some people here have been started on 60mg and others on 10. Around 20 seems average and some people may stay on 20 for several months before slowwwwly tapering down. The lower the dose, the slower the taper. I don't know why your mother could not have been tapered in relation to her symptoms. It sounds cruel and crazy to take her dose down to levels where she is clearly suffering and in significant pain. Some doctors are very squeamish about prednisone and seen reluctant to let people stay on it! Understandable I guess, as we all know what pred is capable of in the way of side effects. But in your mother's case, her illness sounds very severe and she could possibly be healthier on pred at a dose that will allow her a decent quality of life, than suffering PMR to that degree, AND being at risk of developing PMR complications like arteritis!! I cannot see that a dose of say 12 or 15 is so terrible, even longish-term, but I am not a doctor, of course! However, we don't really know the exact situation, as your mother won't talk about what the doctor said! Maybe you could press her to allow you to be with her at her next appointment? Does she see a rheumatologist or just her local family doctor? She really must see a theumy and if she already is, and she is still suffering as you say, maybe it's time to change to another one? Sorry I can't give advice at all about other drugs, hope someone here can. Please give your mother all our very best wishes, tell her there are people out there who understand and care.Thanks for your replies.
It's helpful to know about the dosage levels as I suspected that higher doses were often used, and that sometimes people stay on higher than 10mg. for various reasons.
She does see a specialist who came highly recommeneded by her friends. He has never prescribed higher than the initial 15mg. and clearly won't let her even stay on 10mg. now which isn't enough anyway.
There's no way she would ever let me go to the doctor with her. There's also no way I could ever persuade her to get a second opinion either as she believes the current specialist is the best in the field. I also know she doesn't tell the specialist the full extent of her disability or pain. She is of the generation that doesn't like to bother the doctors. So I don't think the specialist is cruel - more likely he doesn't know how bad she is, although he does sound as if he may be of the more conservative group as far as steroids go.
I do know the interaction of conditions and risks - heart and osteo especially - will be playing a part in the doctors decision, but suspect 15mg, which seems to be just enough to make life bearable for her, would be an acceptable risk.
The difficulty is how to get any of this information across; as far as I can gather my mother believes even 10 mg. is a massive dose.
I can see your difficulty Griffin! You can really only help your mother to a certain point, as she is so independent and private, and as you say, of the old school who don't like to fuss. And there may be other factors as you say, affecting this particular doctor's reluctance to prescribe prednisone in a dose that would alleviate her symptoms. I believe that 10mg is considered a "low dose" of pred and I know that many people are on 15 or 20 long term, not just for PMR. I wonder if your mother knows about giant cell arteritis and the risk of this complication, when PMR is untreated or treated so conservatively that symptoms are still severe? My grandmother, whose PMR was untreated, developed GCA and ultimately had a stroke from it. This is why I take my prednisone without complaint! (well, I still manage to complain a bit, lol). best of luck with helping your mother and hopefully she will get some relief soon. Griffin, I'm not familiar enough with this disease to be in a position to offer you advice. But I can give you one of these. I had a similar thought to Reni; Tell the Doc that you know they can't give
Thanks so much for your replies. Means a lot to me.
chico - I doubt my mother is aware of giant cell arteritis though I am ! She never wants to know details.
Like you I know people with other diseases on long term doses of 15-20 mg. but of course one never knows the individual issues exactly.
Passing information to the specialist is a good idea, though I would have my work cut out to find out who it is, and the GP end is problematic, although I do know the hospital.