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Not sure whether PMS or steroid decrease is causing pain.

Posted , 4 users are following.

mary68968
mary68968

I was diagnosed with PMS two months ago. Started on 15 mg. & then rheumatologist raised it to 20 just for a few weeks as the inflammation was not coming down as fast as wanted. Did blood work & everything was back in normal range so decreased to 17.5 & now have pain in wrists & fingers. Not sure what to do. Do I stay with the decrease or go back up to 20.

0 likes, 25 replies

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  • Marilyn2501
    Marilyn2501 mary68968

    Posted

    I would go back up to 20mg and see how that affects your joints and if there is little or no change go back to discuss with your doctor, I find that after taking the steroids which is just for the inflammation to take paracetamol for the pain this works for me but really with taking the steroids this should be enough but there is no hard and fast rule and is definitely not written in stone what to do for yourself as an individual 

    good luck and I feel your pain take care 

      

  • mary68968
    mary68968

    Posted

    Thanks Marilyn, think that is what I will do & call doc. on Monday.  Not really bad pain, but thought with the inflammation down this woulf not happen.  Back & forth...back & forth.  So many ups & downs.
    • Marilyn2501
      Marilyn2501 mary68968

      Posted

      Unfortunately that is the nature of this nasty PMR but I have now found that if I take 20mg of pred at 2am along with 2 paracetamol that I at least have a more comfortable day not pain free but more bareable saying that when I went to see my gp he wasn't happy that the pred was not helping and has now booked me in to see a rhemotologist so I'm not sure now whether it is PMR or rhemotoid arthuritus but until I see the specialist I have to stay on the same medication till then

      it is a really nasty disease and unless you know about it you cannot describe the pain and discomfort you are in to anybody and it would be lovely to just be out of pain for a while, take care 

  • mary68968
    mary68968

    Posted

    I do feel lucky that I have a good rheumatologist after a rather bad start with a gp.  Much of it seems to be a process of elimination & my doctor seems to keep an open mind & is patient with me as I am not the best patient in the world.  Always been very active so this indeed cramps my style.  Good luck to you.  Glad you are seeing a rheumatologist & hope you find the answers needed to get you out of pain.  I do know that if it is RA the effective drugs would be different those those used for PMR.  Strange everyone one of these disorders needs different meds.  I am sure it makes it difficult for the docs as well.
    • Marilyn2501
      Marilyn2501 mary68968

      Posted

      Well you have to put your faith into someone and I think a specialist in this field is a pretty good place to start so hopefully they will point me in the right direction although I have got to wait till 2/7/14 so until then pain

      Take care I'm always available for a chat and support and a dam good cussing if needed xx

    • EileenH
      EileenH Marilyn2501

      Posted

      The specialist I saw was hopeless - totally uninterested in what I had to say. It isn't uncommon either and a good GP may often be better - plus you have some continuity. I saw two different people in two visits, one was only a "GP with a special interest" and my GP at home was more interested!
    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      Hi EileenH I'm sorry to hear that your specialist didn't show any interest and I hope that I don't receive the same treatment because I need some answered and some kind of result as this is stopping me having a normal life at the moment

      I am still on 20mg per day @ 2.00am for the inflammation and 8 paracetamol during 24hrs for pain and now just waiting for a solution of sorts

  • EileenH
    EileenH mary68968

    Posted

    If the pain starts to get better stick it out for a week or 10 days - that will have been steroid withdrawal pain. If it gets worse it is because there is still inflammation around and the PMR is resurfacing. Having normal markers does't mean ALL the inflammation has gone. If you go back to 20mg - reduce in 1mg steps next time, it reduces the likelihood of missing the right dose and/or the body noticing the reduction in pred. There is a scheme on here somewhere that I posted to spread each reduction over weeks which has worked miracles for everyone whose tried it so far - quite easy reuctions with little pain and getting to much lower doses before having to stop.I'd give it to you here - but I'm on holiday using the laptop and it isn't on it.
    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      I don't think I could cope with having a reduction program at the moment because of the pain I am in I'm just hoping for the specialist to give me a magic pill to stop this pain
    • EileenH
      EileenH Marilyn2501

      Posted

      If after a week on 20mg pred you haven't had about 70% reduction in your symptoms - the chances are it isn't plain common or garden PMR that you have. There is polymyalgic syndrome that is pred-responsive - and that that is not. That that is not required investigation - and it could be caused by other forms of inflammatory arthritis or a hormone imbalance, it may be fibromyalgia, or vitamin D deficiancy - and even some forms of cancer will cause it but any suspicion of that should have been ruled out with a full blood count. 

      The bad news though is that, apart from pred-responsive PM syndrome where pred works a miracle there is no magic pill. In most forms not even opiod painkillers will do much. I'm sorry - but that's the way it is so far.

    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      I am now thinking that I might ask my gp for a private consultation as my appt isn't till 2/7/14 and I need to get some answers I feel before then as I am in a full time job and although my employer has been very obliging to my situation it's a long way off to 2/7/14 

      my pain situation is still the same as ever and I am resting as much as I can but trying to do a little so that I don't stiffen up its a bit ting and yang 

      what do you think Eileenh about the consultation 

      hope you are enjoying your break xx

    • EileenH
      EileenH Marilyn2501

      Posted

      If you get a good rheumatologist then a private appointment can be the best few hundred quid you spend - in the UK, if you see one who also does NHS they may transfer you to their list. Ask your GP to call the hospital and ask if there is an earlier option because of the pain you are in - I have even suggested a few tears to convey to a GP you are in unbearable pain. It shouldn't be needed, but if it is a male GP then sometimes taking a partner with you works miracles too! One lady wrote a diary of how she was affected - that got through to her GP. It is awful when you have to go to work too - you have my sympathies.
    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      Thank you Eileenh I think that might be my best option as you say and I will mention it to my gp tomorrow 

      I am seeing him because I have been off work since Easter bank holiday Monday due to viral infection and then PMR so the idea of my going tomorrow to see him is to see whether or not he signs me off to go back to work or keeps me on the sick I shallnt know till tomorrow but I feel he won't sign me off for work as I don't feel well enough to do my job and although my manager and friends at work have been good to me I do worry about my job 

      so that stresses me out also whether my company will keep me on being like this ? 

      What do you think ?? Thank you 

    • EileenH
      EileenH Marilyn2501

      Posted

      If this is all since Easter - I'll lay odds the "viral infection" was actually the start of whatever it is you have. In the case of GCA there is protection - not sure about other things off hand. However - your occupational health deptand your union will be helpful to you. In many cases you are better remaining off until it is sorted - when you go back and it is too much and are off again it appears as several sick absences - which they regard as worse than one long illness. But no company set up a memorial to a member of staff "They suffered for the sake of the company"! Make youself too ill and you may take far longer to recover.
    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      Yes yet again you're 100% right and I was diagnosed with PMR first and then I had a viral infect and because I wasn't eating or drinking my medication wasn't being absorbed hence flare up of PMR and as you say at work you are but a number and a name doing your job but I am very conscientious and worry I'm letting people down particularly as they are paying for me to be poorly so it doesn't gel right with me 
    • EileenH
      EileenH Marilyn2501

      Posted

      It's our generation - but being ill is something else. I doubt others would worry about letting you down.
    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      Very true but I'm now 66 and have worked since I was 15 so I've always worked and always been fighting fit but I think this illness whatever it is will probably be the end of my working career I hope not cis I love to go to work but time will tell I suppose

      Thanks EileenH you always put things into prospective xx

    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      Hi EileenH I went to the doctors on Monday and have asked to see a consultant privately and my doctor thought it was a good idea and has asked his secretary to write a letter that should get me in to see him within two weeks which is better than 7 weeks 

      I am waiting today for that letter then I can start ringing around and get an appointment hopefully

      I have let my employer know and they are fine about it for time being and told me not to worry so it's just a matter of getting the appointment so I think I shall make notes of when it all started and record as much as I can remember when it all came about is there anything else that I ought to be asking the consultant when I see him ? 

      Hope you're ok and all my fellow suffers xx

    • EileenH
      EileenH Marilyn2501

      Posted

      Where do you live? There is one top guy in Ashford (Middlesex if that's what it is still called!) and Bristol is a good group. Not all do private of course which is a bit of a pain. 

      Diary of the lot, including how you responded to pred or anything else you have taken, the bug, the lot!

    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      Walsall West Midlands I'm thinking new cross Wolverhampton 
    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      Hi EileenH I have got my appt with a specialist 12/6 can't get in any earlier but that's better than 2/7 so I hope for some answers

      I wonder if you could give me an answer to this question my thumb on my left hand it keeps going blue like as if I've burst a blood vessel and it's very painful when it first happens and I haven't knocked it, it just appears what do you think that it as it's happened 3/4 times recently 

    • EileenH
      EileenH Marilyn2501

      Posted

      I haven't come across anything like that before - but mention it to the rheumy. Make sure you have a list when you get to see this chap privately - it saves time and means you have a prioritised list of queries. There may not be time to deal with everything at once so get the most important bits done first. 

      I did often feel as if I had bruises (still do occasionally) but there was nothing to see. You sound to have visual evidence! However, don't pin your hopes on answers - they may not be forthcoming. Just hope for some help to be reasonably pain-free - everything else is a bonus.

      My husband took early retirement 5 years ago (couldn't stand the NHS as it was going any more). I was self-employed anyway and a couple of years ago the second "crisis" cut my work to a minimum. We both do a bit of consultancy/translation which keeps us out of mischief. But retirement was the best thing we ever did. Don't panic about it - it is all mind over matter.

    • Marilyn2501
      Marilyn2501 EileenH

      Posted

      Thankyou eileenH  I shall mention it when I go and yes I shall make a list to save time of things that I have had done over the years but as you can tell my most important is this PMR and it would be nice to just be able to lift my arms without any pain oh what joy I don't ask for much but that would be lovely

      I am now thinking very seriously of retiring as it is one thing less to worry about 

      Thankyou once again xx

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