Posted , 11 users are following.
I have been taking the very nasty drug for 3 mths for PMR and have gotten nowhere except I have developed nearly every side effect listed plus I think some that haven’t been listed. Does anybody know of anything else hat controls PMR? I don’t know what’s worse PMR or the side effects to the prednisone
0 likes, 27 replies
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r.d.s26296 faye05942
Posted
Are you decreasing slowly. ?
How much prednisone do you take now ?
So far, as most know, Prednisone is the only treatment for pmr.
lynda62707 faye05942
Posted
Hi Faye, I too have been on prednisone for 3+mo., and I've also developed many of the side effects of said drug. God awful!!
As of now, I'm not aware of another medicine that's as effective however you may hear from others w/different info. My pmr was Greatly improved within hours of taking my 1st dosage (15mg).
I'll be seeing my doc this week and hope to be tapering down after that...can't wait to get off this stuff!!
What are your other symtoms and what dosage are you on?
faye05942 lynda62707
Posted
i started on 50mg and have brought myself down to 10mg which is a trade off between pain and side effects.
my side effects are blurred vision, a painful swollen face and neck, swollen hump on my back, increased weight around the middle (I look like I’m pregnant) I get that hot I feel like I will explode, I have trouble sleeping, and that’s what I’m like on 10mg it was worse when I was on
the higher doses..I still have morning pain but that’s just the way it is...very depressing
i cant wait either, 3 months is long enough
amkoffee faye05942
Posted
It's really hard to answer your question without knowing what dose you started at and how much you've reduced since then. It could possibly be that you're not on a high enough dose to control your pain or it could be that you don't have PMR at all and that's why it's not helping your symptoms. But prednisone does more than just reduce your pain it reduces the inflammation that is in your body. You have inflammation that's in your muscles and joints and organs all of which can make you very sick. A sure sign that you have PMR is to treat it with prednisone and if the pain subsides or gets better then it is a confirmation that it is PMR. PMR pain also does not respond to any kind of pain-relieving drug. For example I was taking opiates for chronic back pain when my PMR reared its ugly head. I could feel the pain right through my pain medicine. But when I'm on the proper dose of prednisone my pain disappears. In the last 2 years I've been able to reduce down to where I am now at 5 mg. And if they get you on a proper dose then that will reduce your inflammation and your pain. You can also choose to follow a diet to help reduce the inflammation in your body.
lodgerUK_NE faye05942
Posted
faye
Firstly they are 83 listed side effects (pred has been around from 1949) and there are two others I know of, one is 'treacle brain' and the other is 'dropping the odd thing out of your hand'
It would help a bit in answering your questions, if you could tell us exactly which side effects you are currently encountering.
At present, it is pred,whilst it does not cure as currently there is no known cause and until that is found no known cure.
If you go the the pinned thread on this site https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 ; - You will find a wealth on information and it will also lead to you the charities and their websites and also then onto support groups.
In the meantime, please try and come back with the answers to the above questions and thos post by r.d, lynda and amkoffee.
In the meantime pred is not your enemy, it is an unwanted friend that you need.
You are 3 months into this auto-immune illness and the one thing you need is knowledge, as that is power.
If you go to
EileenH faye05942
Posted
What do you mean by having got nowhere? More details would help.
PMR is characteristic in responding quite dramatically to a pred dose of 15-20mg/day for most people - if there isn't a 70% improvement in the symptoms within a week or two either the dose isn't enough or it isn't PMR that you have and your doctor should be looking further.
If it were PMR you have and you had experienced the relief most of us here have had maybe you would not call it a very nasty drug. In the space of 6 hours it gave me my life back after 5 years of undiagnosed PMR and I know a lot of people with GCA who are eternally grateful to it because it saved their sight. It is the only drug that manages PMR well at a reasonable price. Actemra/tocilizumab may help reduce the pred dose but it costs a small fortune and has some not inconsiderable side effects of its own.
Most of the side effects of pred can be managed pretty well when you know how - but for others to make suggestions you will have to tell us which you are suffering. I had a fairly torrid time when I was on methyl prednisolone - but switching to prednisone and taking myself in had means all the side effects I had then are gone. And as lodger says - there are well over 80 listed side effects and in 10 years on the forums I have met no-one who had them all. Lots of us have very few or manage them well.
If it is PMR you have you will need pred for some time, less than 20% of patients are able to get off pred in under 2 years without symptoms returning and they are felt to be at a higher risk of having a relapse later and having to start again You don't stay at higher doses for long and once you are under about 10mg the side effects do reduce considerably. In the meantime, prevention is better than cure and lifestyle adaptations will also help to get to a lower dose. But it is well worth learning how to make pred a welcome companion - even if you can't get your head around it being your friend.
faye05942 EileenH
Posted
EileenH faye05942
Posted
If the 10mg isn't enough to control the inflammation you might as well not bother - you have all the downsides with none of the benefits. It may have side effects - but we do know about them all which is more than be said for many of the new so-called "wonder drugs" that turn out to have feet of clay after a while.
Was your diagnosis for "only" PMR or was there some chance of GCA? 50mg is a very GCA level of dose and is totally inappropriate for someone without signs and symptoms of GCA. Because then all the side effects pale into insignificance against the ultimate adverse effect of GCA: irreversible blindness.
To reduce from 50mg to 10 in under 3 months is not slow - and some of those things you are attributing to pred also happen with GCA and PMR although I will allow the hump IS definitely the pred. But even that can be helped - by cutting carbs drastically I lost 35lbs, mostly from around my middle and face. I have a small hump but not excessive and in general you cannot tell I have been on pred for 9 years, even the doctod say so and when I was in hospital 6 years ago Cushingoid was the top of the diagnosis list.
PMR will go away for 95% of patients - but not quickly. You have a new normal now and you will have to learn to cope with it and then you can have a reasonable quality of life. It will get better, 3 months is very early days and you have had a hard start being put on 50mg. I'd suggest your doctor could do with some education - either it is PMR, in which case they exposed you to an unnecessary level of pred, or it is ?GCA, in which case reducing you down to 10mg in under 3 months is asking for trouble. Or you need someone who already knows what they are dealing with - and shares the approach with you.
EileenH
Posted
faye05942 EileenH
Posted
EileenH faye05942
Posted
Sorry to hear that - although I am bound to say that they might have cottoned on to this sooner had they not started you at such a high dose of pred. A lot of things besides PMR will respond to such high doses of pred and that is the significant factor in starting ?PMR patients on a moderate dose of 15-20mg/day. PMR is characteristic in responding well, even if not perfectly, to that sort of dose. Anyone who needs these levels must be investigated/monitored carefully for alternatives. There is no way to know the PMR diagnosis was correct at the time - there are no definitive tests for either PMR or RA and all that can be said about PMR is that it is a set of symptoms that is caused by an underlying disorder, it isn't the disorder itself and there are several potential causes, including late onset inflammatory arthritis.
I wish you well on your new journey - in my experience the RA forum here has been very good and supportive although it seems to have been a bit quieter recently.
r.d.s26296 faye05942
Posted
Hello Faye
Have you discussed with your Doctor what will be the medication you will take for your RA.
If it is methotrexate, then there are some nasty side effects from that too.
Eileen had quite a horrible experience with methotrexate...
I'll hand you over to Eileen.
EileenH r.d.s26296
Posted
faye05942 EileenH
Posted
My specialist has given me a long term plan which is me slowly bringing me down on the prednisone. I am quite happy with his approach and his knowledge on pmr v ra, his opinion is the pmr should disappear by the time I’m off the prednisone.
i am hoping and trying to stay positive about the mtx that I don’t get any side effects. I am also having blood tests every 4 weeks and seeing my specialist every six weeks. Which is ongoing for at least six months so it’s all in the lap of the gods or his at least Lol....
EileenH faye05942
Posted
"his opinion is the pmr should disappear by the time I’m off the prednisone."
It may be his opinion but the reality is usually the other way round. The median duration of PMR is 5.9 years - and it has been found that mtx doesn't make a significant difference in tapering except possibly to smooth out flares a bit. You will need pred at some dose as long as the underlying cause of the inflammation that causes the symptoms is active. NOTHING changes that - except maybe Actemra but even that isn't guaranteed.
But much more likely is that the "PMR" symptoms were in fact due to the LORA - that it was LORA rather than PMR in the first place. About 1 in 6 of patients told they have PMR have the diagnosis revised later - and most often to LORA. It may morph - but mistaken diagnosis is far more likely. Not anyone's fault (for want of a better word) - there are no definitive tests for either, even RA in its early stages.
missmagwumps EileenH
Posted
What is MTX ? I hear you all talking about Prednisone but I take Prednisalone - can't seem to find the difference in the two or is one just a generic or is one US and UK? Would like to find out as much as possible as am going back after 3 months to the rheumatologist on 19th October....thanks x
EileenH missmagwumps
Posted
MTX is methotrexate. Prednisone is the usual corticosteroid used in the USA, I also take a form of prednisone used in Europe but not available on the NHS in the UK, you can have it privately I think. Prednisolone is the active form of the drug - prednisone is inactive, is processed in the liver to prednisolone and then it can have an effect.