Posted , 7 users are following.
I have had PMR for about 26 months and have just started the taper from 7-1/2m to 7m. This is day 6. All seems to be going ok except for the pain on the outside of my shoulders. I just took some Tylenol to see if that will help. Is this an indication that I have tapered too soon...or, if the Tylenol works, should I continue the taper? Any thoughts welcom..thanks.
0 likes, 31 replies
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EileenH kathy67492
Posted
You must never lose sight of the fact that you are NEVER reducing relentlessly to zero - whatever form of reduction you use. The slow reduction just makes it more comfortable, reduces but doesn't 100% eliminate the possibility of confusion between flare and steroid withdrawal and helps you identify the lowest dose as accurately as possible.
You are looking for the lowest dose that provides the same result as the starting dose did - and then you stay there until the underlying autoimmune disorder decides it will go into remission. That may be sooner or later - or even, possibly, never. A test reduction at intervals should be attempted but never forced - if it doesn't work then you don't push, you wait a couple of months and try again. Eventually it WILL work - but impatience will just lead to a flare, a return to a higher dose and a set back.
kathy67492 EileenH
Posted
Ellery1 kathy67492
Posted
I starting taking 10 mg back in August of 2016, I'm down to 5mg which relieved the pain but I was very moody, I guess from the adrenal gland. My MD suggested trying to 2 1/2 mg but the pain came back. So I decided to take 3 3/4 mg and that seems to be working ok. Just a little ache. I'm concerned that the PMR will come back.
EileenH Ellery1
Posted
If your adrenal glands are not working well yet you need to be careful about reducing in the sort of size step your MD suggested. Closer to 1mg at a time would be better - I assume you only have 5mg tablets?
The PMR never went away - the actual cause of the disease is an underlying autoimmune disorder and that has been chugging along in the background, all the pred does is manage the inflammation that is caused.
This might help to effectively slow the reduction down for further reductions:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
It is being used in a clinical study on PMR and steroids. But don't try another reduction for a month or so at least - and be sure there are no niggles.
linda17563 EileenH
Posted
Well Eileen I?`m back from seeing the rheumie after he made me reduce very fast if you remember.....(oops I`ve gone all italic!)
?Well I came out with more questions in my head than before I went in...maybe you will know his thinking!
?I told him how bad I was at 5mg (which he made me drop to)....balance/dizzy and lots of pain especially my back/pelvis....he said, i`m thinking that you never had PMR, so I asked what he thought it is, and he said Osteoarthritis.....then he said but to prove it we must start again, if you had come to me and I suspected PMR, this is the regime you would follow, it gets 90% of my patients off pred in under 2 years!
?15mg, down to 12after 1 month, then 1mg every month after that.....which he wants me to start tomorrow even though I told him steroids make me feel very ill......he said not to split dose like I have in the past because the adrenals gland won`t wake up again.....I am confused and worried about starting all over again after 5 years of this.......I go back in 3 months.....(I`m on 7mg at moment and still in pain)
?He a very nice rheumie, and unlike the last one I`m allowed to ask questions!....but I have been on the osteo website and it dosen`t elaborate on back pain....
Eileen I would very much welcome your take on this, thank you
EileenH linda17563
Posted
I suppose you have to have a go.
If he manages 90% off pred in under 2 years why hasn't he published about his technique? I think that is wishful thinking - and the patients he's got off pred just don't go back even with problems because he says whatever it is it isn't PMR. And I'd love to know how he thinks it PROVES it one way or the other. However, that is all by the way.
I think you have to accept that at least he isn't trying to force you onto methotrexate like the other guy was. I think he is wrong about the splitting not allowing the adrenal glands to wake up - they won't until you are down to well below 10mg anyway - but how can you prove it?
I wonder whether 10mg will do the job now? You could try - and if that works you would just stay there and be on 10mg when you see him again without having had to go back to 15mg.
How I wish someone would concentrate on finding a reliable diagnostic test and way of monitoring what is going on. It is all such a mess.
Ellery1 EileenH
Posted
I agree I would hope there is a test that is accurate. My MD uses my SED rate. If it goes up I need more, if it goes down he cuts back. But he did it too quickly. So I had to increase it again..It's not easy trying to figure out how many mg's to take, how to cut back gradually.. and not feel awful
Ellery1 EileenH
Posted
I have 2 1/2 mg tablets, If I have to, I take 2 (5mg) You're right about cutting back too quickly.. It didn't work well for me.
So glad I found this site.
linda17563 EileenH
Posted
Thank you for replying.....
Yes Eileen I have said this all along about a diagnostic test, and what surprises me as well, there are about 6 rheumies at my hospital, and they all treat PMR differently, how can that be right......this rheumie goes by my "normal" blood test results....to which I said this pain is far from normal!
?Because I get so many side affects from the pred, horrible episodes of balance, heart racing dizziness, and other things, going back to 15mg terrifies me....my husband thinks I should do what he says, my son says start at 12mg.....I have taken 10mg this morning so far......my family and friends refuse to believe there isn`t another alternative to pred....so I asked him, he said there isn`t one I said my sister has RA and takes a DMARD, he said no to that.....well Eileen I feel so desperate I would pay if there was......to your knowledge is there anything else??....and does anyone ever pay to go private and get offered anything else.
I had an MRI on my pelvis 17 days ago, he hadn`t got the results!
Thanks again...
EileenH linda17563
Posted
There is nothing else approved for PMR at present that works - except pred. PMR isn't an arthritis, it is most likely a vasculitis (GCA is definitely), inflamed blood vessels. There is another drug in clinical trials that MAY work in PMR. it is used in RA and seems to work in GCA, but it costs £12,000 per year and it isn't known yet how long it works for, whether having had several months of treatment you then are in remission permanently or at least a long period of time.
In the UK even private patients won't get anything any better, In the US I know there are doctors who will try this very expensive tocilizumab - but there are ways there of getting some funding.
I'm afraid your family and friends wil have to accept that there is pred - and that is it. If there were other options - they would use them rather than pred.
linda17563 EileenH
Posted
Thank you Eileen, yes the drug you mentioned above was in the news last week as being approved for PMR and GCA in the UK, and will be available soon...yeah right.....I`ll believe when I see it.....
?Family and friends say go private, so what`s the point then.....
?Just rung my surgery to see again if the MRI results (pelvis) were through to them....no, they asked me to ring the hospital and give them their fax number so they can have it.....I rang MRI dept, yes, it`s still here, I `ll see what I can do to get it sorted!....GRRRRRR...well, I can deal with all that, but what about people who can`t......that`s my rant for the day
.........
EileenH linda17563
Posted
It isn't approved yet - and it is unlikely to be approved for PMR for a very long time! Yes, people pointed out the article (in the DM wasn't it?) on the forums but they are jumping the gun a bit I'm afraid (nothing new there then
)
Private insurance in the UK rarely covers chronic conditions for ongoing care even if you already have a policy - although some policies will cover acute exaccerbations that require more than just your usual treatment. If you choose to go privately you will then have to pay every penny for drugs and the administration of them - sometimes that includes a hospital stay. People who don't have private cover often don't realise how it works - and private is all too likely to kick the chronic patient off their cover or when it comes for renewal the cost rises exorbitantly. You can't blame them I suppose, if everyone paid less for their policy than needed to be spent on their care they'd go bust, but it is the fundamental problem with the US system and why Obamacare was so longed for by many people who couldn't get affordable cover because of a longstanding condition and those who couldn't afford cover at all. And it is part of the problem for the NHS - drugs costs have shot up in the last 40 years...