Increased pain with predisolone reduction
Posted , 13 users are following.
Hello. I have just joined the group. I would like to hear from any
members that have had increased pain while reducing prednisolone. My ESR and CRP levels are normal and I am coming off prednisolone in a few days. It has been a slow reduction over 18
months. I am waiting to see rheumatologist.
0 likes, 17 replies
mike42494 wendy5050
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Anhaga wendy5050
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lodgerUK_NE wendy5050
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where do you live, is there a support group near you?
google pmr & gca and you will find North West, North East and Scotland.
On the north east site there is also a booklet called 'Living with PMR & GCA'.
18 months is not long - why are you seeing a Rheumatologist after 18 months? Has something occurred which your GP is unsure about?
EileenH wendy5050
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PMR is not the disease - it is the name given to the constellation of symptoms which are caused by an underlying autoimmune disorder that causes your immune system not to recognise your body as self. As long as this underlying autoimmune problem is active you will need some pred to manage the inflammation it causes which leads to pain and stiffness.
You start with a dose of pred that is enought to manage the problem for most people. Once the symptoms are reduced and stable you can reduce the dose to find the lowest dose that gives the same result as that original starting dose achieved. You are NEVER reducing relentlessly to zero - it is far more likely that your longer term dose will be in the range perhaps 5-10mg/day. Every morning a new batch of inflammatory substances, cytokines, are relased in your body - the dose you need is what will manage that. By reducing in very small steps and with a good space between reductions you can identify that dose pretty accurately. Go too low and the symptoms will return. Reduce in too big steps and you will experience something called steroid withdrawal rheuamtism - and the symptoms are so similar to PMR you won't know which is which. The only difference is that a flare will get worse over time, steroid withdrawal will, if you are lucky and the drop wasn't too big, improve over the following few weeks.
To attempt to be off pred in 18 months is far too optimistic. About a quarter of patients manage to get oof pred in under two year - but then are at a higher risk of having a relapse at some later date - often withing weeks or a few months. The second episode rarely resembles the first and jusdging by what we see, is typically harder work. About half of patients require pred for 4 to 6 years. Ther remainign quarter tke even longer, sometimes remaining on pred for life, not always due to PMR/GCA but also because their adrenal function is too poor for norma production of cortisol, the body's natural corticosteroid.
Just because your ESR and CRP are "normal" doesn't mean the PMR (or rather its cause) is burnt out, in remission or whatever you want to call it. They often lag behing the reduction, any pred may be enough to stop them rising, and in some people the development of this "acute phase reactant" as it is called doesn't happen again. No-one knows why, it is just so.
Here is a link to a lot of reading for you - so you can learn as much about PMR as your doctor - probably more!
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
i assume you are in the UK since you speak about prednisolone. There are support groups and sites to provide help. As lodger asks - are you just under a GP or have you already seen a rheumatologist?
BettyE wendy5050
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This does sound daunting, perhaps, but I did get there and so will you but be prepared for it to take time. Good luck and best wishes.
reggie92967 wendy5050
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EileenH reggie92967
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Yes, we all want off pred - but getting off pred means one of two things: either the autoimmune disorder has gone into remission/burnt out or whatever you want to call it, or you have decided that the side effects are not worth the freedom from pain - because if you stop the pred that is what happens, the symptoms will be back. And though your labs look good they may not rise significantly, if at all, as long as you are still taking a reasonable dose of pred and when they do it may be with a lag time.
You can reduce the risk of weight gain, moonface and bloating to some extent by reducing carbs drastically. Several have not put on weight to start with and others have lost a lot of pred-induced weight. I lost a good 36lbs, I lost a bit more but a few pounds went back on. The first to go was the midriff fat followed by the moonface. About half the weight I put on though was due to PMR-induced inactivity - nothing to do with pred because it was before I was diagnosed. Five years of pain, depression and unmanaged PMR accounted for a lot.
I have BP problems too but it is equally as likely to be due to the atrial fibrillation I also have and that is due to the autoimmune part of the picture - it started alongside the PMR symptoms, not the pred. The BP is well controlled with medication - and that doesn't make me any different from thousands of others of my age.
Silver49 EileenH
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EileenH Silver49
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It may make a difference as to where we go with our camper van - some of the Lake Garda campsites have stiff climbs up from the nice flat lakeside walking/cycle track. Come June/July we have a 2-week tour booked in Canada and although we don't envisage any problem with the second week which is a cruise, the first week is a bus tour from Calgary down to Vancouver and we have no idea what the itinerary is. We'll worry about that when it happens...
I do often say to new people who are totally depressed about PMR/GCA that in a year they will look back and see how far they have come. To be below 10mg after barely a year is pretty good - and it was where I was stuck for a very long time. It is not far above the physiological dose and having a life is far more important than trying to force the dose lower. Business and stress and PMR don't mix well - and that is even more the case if you also try to manage with too low a dose.
We are a long time dead - so I have every intention of living well - even if it does require a few pills.
Silver49 EileenH
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EileenH Silver49
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David had cancer 21 years ago, has had most of one lung removed and what's left isn't much cop There are the leftovers of that - some fibrosis of the lung from radiotherapy, deafness due to chemo, unknown possibilities due the radio- and chemotherapy. He coughs and splutters on an almost permanent basis - some I suspect due to allergies. He's been bad today - very windy so all drying out and dusty. And a few weeks ago the consultant informed him he'd had TB at some point! That was news though one doctor did mention she thought there were signs of TB at the beginning of the cancer saga - but it outweighed eveything else afterwards! He has pulmonary hypertension, as yet hardly registering on the radar but apparently entirely due to the removal of a lung. So I have no desire to not take pred just because I might have a year or two less at the end - jam today please.
Silver49 EileenH
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...probably Quilty then. I agree with the jam today but it would be better if I kept off the sweet stuff........even the bin liners are becoming a bit tight on me and the nipped in waist has nipped off!😀😀
EileenH Silver49
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Silver49 EileenH
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EileenH Silver49
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Silver49 EileenH
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