CANT DECREASE BELOW 10 MG NEED ADVICE

thank you .. have you had a similar experience with PMR?

Yes Helene - very similar! I was diagnosed in May 2017. started on 20 mg pred and like you - miraculous results. Came down to 10 mg where I am now) and finding it very difficult to go any lower. If I do taper lower, back come all my aches and pains and I feel very, very tired.

As I said in my reply to you, I am not that worried as, via this forum, I have learned that pred is not as bad as some doctors make out. The average time for PMR to burn itself out is between 3 and 5 years so we are nowhere near that yet! We need to be very patient and, as others have said in their replies to you don't ever try and drop by more than 10% and always use the DSNS very slow taper method.

I am fortunate enough to see a GP here in Tasmania who diagnosed the PMR straightaway as she has a friend with it. She listens to me and what I read on this forum. There is also a very good book written by Kate Gilbert called " PMR and GCA: a Survival Guide.

Again - Good Luck.

Judith.

Hi ptolemy, reading your reply to helen, she should not be taking pred and be in pain. Is it normal for some to be 70% pain free all the way through.

i have never been pain free. Diagnosed the same time as Helen

Is it more than 30% pain you are refering to?

The 70% is the expected quick improvement when you start a patient with PMR on pred - and usually it then improves further over the following weeks. Some symptoms improve very quickly with pred but others such as bursitis and tendonitis can take much longer to improve, mine took the best part of 5 months to go altogether. I still get some bursitis in my hip even now.

Some people are pain-free or near enough. Others are never pain-free. You have to learn your own version of PMR unfortunately!!!

Sorry my bad English. I was really saying Helen should not be in such a lot of pain. You should expect to not be in more pain than when you first took pred. Most of us are never fully pain free, but at least we can start living a normal life again.

Thank you, I did increase the prednisone to 10mg and didnt get relief, so I made a jump to 15mg today and I will see how it goes.

What did you do when you had flares of the disease activity? Did you increase your dosage?

Yes - doesn't matter WHY the pred isn't enough - if you have a flare you need more!

Please comment on reasons for not trying actemra. I am considering it to get off of pred. Pred. is ruining my bones.

This site is now very hard for me to work with, everything has changed and I am not good at computerese.

but please state why you can't take actemra and why you think others shouldn't. Thank you from an old follower of this site who is still in awful pain all the time.

One of the side effects of Actemra can be causing arrythmias, irregular heart beat. I already have atrial fibrillation so it isn't advisable to add more risk. My husband has had TB, I also have a very high reaction to the skin test which suggests I may also have had it - using immunosuppressant medications like Actemra could result in a reactivation of latent TB so while I could try Actemra despite that, I would also have to take an anti-TB drug for the first 8 months to reduce that risk.

I don't say that others shouldn't take Actemra and I would try it if it weren't inadvisable for me - but the patient's previous history has a great deal to do with whether it should be used or not. Helene already has had a rare form of lymphoma, messing about with the immune system could have an effect there so she is understandably reluctant and it is a risk I personally wouldn't want to take either.

Sorry you are also struggling with the site - so are most of us I suspect!! Keep looking in - it should get better not worse. Hope springs eternal...

Thank you for answering my question. Your input is so valuable to all of us. It has been four years of predinsone for me, and I cannot reduce below 10 mg. So that is reason for my interest in the Actemra. Every med has so many side effects, must choose between pmr symtoms or side effect issues it seems. This pmr has devastated my life and I see no way to escape from its grip.

i have been discussing ACTEMRA with my oncologist and am awaiting results from some blood work that he thinks might be beneficial in making a decision. I also have an appt with a DR in NYC next month who has done considerable research on ACTEMRA. I will keep everyone posted .

It took me over 4 years to get reliably below 10mg pred - that was 4 years of pred treatment, 9 years of PMR. I have had PMR for 14 years more or less, I have been on pred for 8 or 9 years - I forget exactly how long now, Currently I am back at 15mg after the third major flare. I need that much to control the atrial fibrillation - which is clearly associated with the vasculitis.

If I were in the UK I'd have no choice - Actemra is not available for a PMR diagnosis and only in a limited basis for GCA. We could apply for it in Italy to see if I could have it but there are problems anyway as I mentioned. We wouldn't have to ask if it were an RA diagnosis. Most pred side effects can be managed when you know how and all medications have side effects of some sort - including Actemra. I tried methotrexate last summer - horrible fatigue, worse than PMR.

I can't however say it has devastated my life - I live well with PMR because I won't compromise on the dose of pred I need and I work around it with lifestyle changes. There are things I have given up but by now I would have given up skiing anyway. I enjoy what I can do and make peace with the rest. Acceptance of where you are is the most effective medication in any chronic illness. PMR is a pain - but it doesn't kill or maim and for that I am grateful. It's not bad compared with what some autoimmune disorder friends deal with day to day.

OMG 14 yrs of PMR? I was told that it burns itself out between 2-6 yrs! I don't think that I could handle this fatigue for that long -

I'm physically exhausted!

It is thought that some 5% of patients have it for a very long time or even for life although the vast majority are over it in far less time than that There is no way you can tell at the start which variety you will have - maybe that is as well! However, I don't find it too bad, I don't seem to suffer the fatigue as badly as many complain of - how much that is to do with diet (no processed carbs and sugar at all except for the very occasional treat) and years of experience with pacing, which is essential.

EILEEN YOU ARE AN INSPIRATION!

I guess I HAVEN't really accepted this as I was always a very active person so I don't stop and don't rest much. I dont feel like "me" and that is frustrating. It will be a yr next week....

Try not to despair I managed to do so much today. I was just saying to my OH how previously I would have had to rest in between and would have felt sore. I felt impatient, initially, but quickly realised that if I didn't pace myself I would not improve. I remember being so frustrated by lack of energy and pain when I overdid it. I am, admittedly 3.5 years down the line but I am on 2mgs and can see the light at the end of the tunnel. I think the realisation that I couldn't fight this but just had to go with the flow helped. I think you will find that many people on this forum have been very active and the frustration is hard. I couldn't have coped if I hadn't learnt to be patient with myself. You will get there though it may not feel like it just now.

Thank you for your thoughts on Pmr Eileen. But this pmr has maimed me causing four vertebral fractures and much back pain and disfigurement. I am at the end of my rope with this disease and do not live a normal life. True it isnt usually fatal , but I am hunched over with 4 broken vertebrae. I can't tell you how that has affected my self esteem. I do not want to go out inpublic and be seen. I am ashamed and embarrassed at my looks. So besides the pain and disability of the disease, i have shrunk into a horrible gnarled body that I hide from eveyone. PMr is excruciating and crippling and destructive. But I seem to be the only one that has been destroyed by it. Perhaps I am just a woose who cannot handle this crippling disease. Sorry to complain so, but this is what pmr has done to me and I don't see any way to undo the damageTruthfully I believe it is killing me very slowly and painfully. i know it has taken my life from me already in that I cannot face the most ordinary of daily tasks like shopping for groceries without feeling ugly and deformed and ashamed. My life might as well be over.

I'm so sorry you have had such a rough ride and I do appreciate how hard it must feel. You aren't alone - no-one is in the PMR journey and I do know a few others who really have a lot of problems as a result of long term PMR but compounded by other things.

The PMR didn't cause the fractured vertebrae - osteoporosis possibly did, but that isn't inevitable with PMR or even with pred. Many people already have osteoporosis or a tendency to it long before they develop PMR - and it is up to our doctors to identify that and discussing means of minimising the risks are essential with sensible advice rather than scaremongering.

When on forums many of us say PMR "isn't that bad" that is because it DOES go into remission for some 95% of patients - unlike the vast majority of autoimmune disorders, most of which are far more unpleasant and life-limiting than PMR and tend to strike much younger. I have said before, and I stick to it, if you feel hard done by by PMR, which waits until we have had a life, go to a vasculitis or lupus forum and read some of the heart-breaking stories there from teenagers and other young people who never even get to have a life. Some can't even complete school, many can never work, study, meet a partner or have children. Others have been in a long term relationship that crumbled in response to their diagnosis. The life changes they experience are sometimes mind-boggling - one friend can no longer eat normal food, she lives on low residue meal replacements because her gastrointestinal tract doesn't work at all. Another spent more time in hospital than at home with her boys who were in their teens and looked after her, not her them.

"I am ashamed and embarrassed at my looks": Have you thought of seeking counselling to come to terms with those changes? I am not dismissing your distress, I realise it must be very hurtful - lord knows, I hate looking in the mirror, I'm old, fat, everything sags. But these are accompaniments to aging at any stage - at worst my old age has arrived earlier but it was something that was going to happen anyway. I must face up to it and deal with it now instead of in a few years time. And while I am quite upset at the changes, I as a person am no different inside. Others do not notice our physical changes as much as we believe - even if someone who has not seen us for some time may do. Those who see us regularly adjust their image of us in tiny steps.

I do hear your cry - I do hope you can be heard by others. But you have to speak up

Thanks for the encouraging words,.. 

So kind of you Eileen to answer me with words of wisdom. Thank you for being kind and wise and sharing your heart with all of us . I understand what you are telling me and i will try to adjust my thoughts in a way toward acceptance. You make a great case for accepting the reality of this situation especially at my age (73). You have been such a wonderful source of information and encouragement over the years to all of us. I will take your advice and especially the point that yes, I have had a good 70 years of health and I will be grateful for that. I need to adjust my thinking . Again, thank you and everyone here that has sent me a good word. And please forgive me for complaining.

Nothing to forgive Padada - it is how PMR affects you, for each of us it is a bit different just as we also have different things we have lost or different ways to deal with it. But there will be someone else who reads your post and learns something about PMR and themself. If you hadn't "complained" then that person wouldn't have learned...