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Increased pain with predisolone reduction

Posted , 13 users are following.

wendy5050
wendy5050

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

17 Replies

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  • mike42494
    mike42494 wendy5050

    Posted

    I was on 20mg of Prednisone for January & February then tapered down to none. Within a few days all my chronic pain returned. Being on 5 other pain meds we discovered that Prednisone took 95% of my pain away so now I am back on 15mg and have weaned off all my other drugs that I was taking for almost 12 years. I walk 1 mile per day and drink Cranberry juice to help get rid of excess fluids.
  • Anhaga
    Anhaga wendy5050

    Posted

    Increasing pain probably means that you need a bit more pred to contol the inflammation causing the pain.  It might also mean pred withdrawal symptoms but the way you describe your reduction makes me think it's more like you need a higher dose.  What is your current dose and what did you start at?  It is considered best practice to treat the symptoms, not the ESR and CRP levels.
  • lodgerUK_NE
    lodgerUK_NE wendy5050

    Posted

    wendy

    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
    EileenH wendy5050

    Posted

    If you have an increase in pain when reducing pred then the disease process is till active and you need to still be on pred.

    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
    BettyE wendy5050

    Posted

    Wendy I cannot add much to what has already been written in other replies except mypersonal experience.  I had PMR twice and it took 3 years and 5 years to get to zero pred. I can vouch for the fact that the second time was more difficult than the first and I had to reduce and increase my dose many times in order to stay pain free ( more or less) before finally taking the last 0.5 mg.  Then it took about two years before I felt really normal again... muscle strength what it had been, BP down to 143/86 ( I am 84 ) spirits back to my usuial confident and optimistic self, sleeping pattern normal. 

    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
    reggie92967 wendy5050

    Posted

    I've been trying to reduce per my Rheumatologist & PCP from 20mg., went to 19, 18, 17, 16, 15, @ 14mg right now, & the symptons are returning. The plan was drop 1mg. every 2-weeks, until reaching 10mg. then monitor me on the 10mg. Calling today, as directed, to let Drs. know I've been starting to feel pain, overall body throbbing, must be inflamation, more fatigue, & bouts of low energy. My labs look pretty good still. I want off the prednisone, sick of the big weight gain, high blood pressure, moonface, bloat etc !
    • EileenH
      EileenH reggie92967

      Posted

      Experience shows that 1mg every 2 weeks is far too fast - you aren't reducing to zero, you are looking for the lowest dose that gives the same result as the starting dose. If you reduce at that sort of rate you easily miss the end point and don't know where you passed it. As long as the underlying cause of the PMR symptoms is active you need as much as you need and that tends to be higher in the early days/months. I had a flare in late January and have had to return to 15mg from 5mg where I had been for a couple of years altogether. I've tried reducing a couple of times, the symptoms start to return after 4 days at 13mg so whatever is going on is still there. I'll wait another few weeks and try again.

      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
      Silver49 EileenH

      Posted

      I can relate to the atrial fibrillation and I had it prior to diagnosis. I think it is part of the PMR and was there before the steroids were prescribed. It is less problematic now but still rears its head occasionally. I have a referral in to cardiology but by the time I get the appointment it may have gone. Mea culpa. I should have gone back to the GP sooner. I'm sorry to hear that your flare continues to require the higher dose. I guess it will go in its own time but it must be frustrating when you had been on a low maintenance dose prior to the flare. Does it mean any curtailment of your daily living/ plans? I am finding that I am able to do more now. I notice a huge difference from this time last year when I hadn't been diagnosed. I could barely walk without having to stop and take a seat. I still pace myself but feel more like the person I was prior to PMR. I wonder if I could taper faster than I am doing but I hesitate as I don't want a flare if I can avoid it. I'm at 9 and started on 20mgs towards the end of May last year. I have a busy and stressful time at present which will continue for some time yet so reluctant to rock the boat!
    • EileenH
      EileenH Silver49

      Posted

      As long as I take 15mg I feel as good as I did on 5mg - I only know there is something not right when I get to 4 consecutive days at 13mg when the morning breathlessness reappears. The only curtailment then is not being able to walk up a hill as usual. This isn't too much of a problem in terms of affecting daily life - David is currently even worse than me and I do have to wonder whether possibly we caught a virus which has done it. The difference is that I'm on pred which deals with it very effectively - he isn't!

      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
      Silver49 EileenH

      Posted

      I haven't been to the west of Canada but enjoyed 3 weeks in the east a few years ago. I hope you are able to enjoy your Canadian trip. I am fortunate in that I never felt depressed about PMR though I do sometimes feel frustrated but being able to do more means that is happening less. I agree about living well and we did a bit of travelling when we retired as having worked with terminally ill people who had regrets I thought it important to travel when we could. Life is for living. As it turned out, it was a good move as regards health but we still plan to do more when OH is better. We are going down another health route concern with him so await the outcome and then onwards and upwards.....maybe not the hills. I hope your flare eases soon and thank you for your helpful and knowledgeable input to this forum. 
    • EileenH
      EileenH Silver49

      Posted

      Have you mentioned OH before? My brain hurts at the moment - doing the preparatory reading for the conference! Sorry to hear he's ailing.

      David had cancer 21 years ago, has had most of one lung removed and what's left isn't much cop rolleyes  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.biggrin

    • Silver49
      Silver49 EileenH

      Posted

      Yes, I have mentioned OH before but wouldn't expect you to remember. He collects serious illnesses like some people collected Blue Peter badges. Fortunately I keep him buoyed up but am realistic enough to know that one day it will all catch up. Meantime, we live life and plan. I think he wonders what I will plan next.😳😳 I remember you saying about Phyllis Windsor ...

      ...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!😀😀

    • Silver49
      Silver49 EileenH

      Posted

      Of course. Your OH worked in Ninewells so would have known her as both and she was probably still Quilty 20 years ago. I can't remember when she became Windsor.
    • EileenH
      EileenH Silver49

      Posted

      Must have been just before then I think. I'm sure she was Windsor by the time he was being treated. That'll annoy me all night now!
    • Silver49
      Silver49 EileenH

      Posted

      I think you are right. It will be over 20 years. I've been retired for over 8 years now.

       

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