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Have got so far ,now back in so much discomfort again

Posted , 10 users are following.

carol16456
carol16456

Got down to 4 mg prednisone after 2years 3momths and my shoulders neck are back into so much pain again which makes my scalp feel as though it's being stretched every way I t can . What to do .I know it's probably a flare ,due to stress .Daughter after IVF expecting twins ,loosing one at 7 weeks ,hoping the other hangs on .She is now 16 weeks .  Her other half was made redundant the day they started IVFand we have sold our house but cannot find one to buy that we want . I don't want to up my pred because it's been such hard work to get hear and want to be well for the wished for grandchild .i even think sometimes the pain is worse than when I started . Advice please .

0 likes, 35 replies

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  • Daniel1143
    Daniel1143 carol16456

    Posted

    We share a certain history, particularly with regard to IVF and a loss.  I understand your stress and pain.

    No surprise that you're flaring.  And not sure there's really much of an alternative but to increase your prednisone for a day or two.  Might suggest 6mg.  With a short burst, you will not lose all that youve gained.  Then back down.

    Best of luck.

    • carol16456
      carol16456 Daniel1143

      Posted

      Thankyou for getting back so quickly , I was thinking that myself . The problem at the moment is that pain is going down side into left buttock up to now have never had it travel that far . So am thinking to go up to 6 mg for several days and then reduce . Feel that I am damned if I do and damned if i don't . Have an appointment to see my doctor in 3 weeks after blood test . Grateful for your input

  • Loulie
    Loulie carol16456

    Posted

    Hi Carol

    So sorry for you. I got off pred at one point but flared again a few months later and have been back on it again for about 18 months and have got down again to 10mg but have sufficient niggly pains at 10 mg that I don't dare to go lower. I am no expert, but my advice to you would be to up your pred to the last dose at which you felt fine ... perhaps a couple of mgs, or more if necessary, and sit there for a while before trying to reduce again very slowly using the DSNS method. 

    As I say, I am no expert but hopefully Eileen or someone else will pop up soon and offer their advice.

    Good luck

    Sarah

  • whitefishbay
    whitefishbay carol16456

    Posted

    Just want to say sorry for all your stress and no wonder you are flaring.

    Hope all turns out well.

  • ricky23486
    ricky23486 carol16456

    Posted

    Sounds like your resilience is now very low - stress levels sky high - pain unbearable.... My question to you is if there is no other medical cause for your suffering and prednisone stops the pain why not take it..? And then when the pain is under control begin the dead slow tapering again? (I actually got to zero prednisone after 2 and a half years and dead slow tapering... And then the PMR flared and I couldn't climb the stairs.... With the support of tjis forum i went back on the prednisone and sysrted living agsin. Roly poly fat and hamster faced but pain free mostly. Now i have tapered to 9 mg and will continue slowly reducing.....unless it flares again....no way will i endure that pain again. Why should you?

  • Anhaga
    Anhaga carol16456

    Posted

    I know you don't want to take more pred but I think if you take enough to make the pain go away, stay there for a few days (I mean a few, like three or four or maybe a week if you need it) and then come down again, just a few days at each step down, you may be back on track before you know it.  But you would need to be strict with yourself not to continue tapering down so quickly if you get the barest hint of PMR niggles.  

    Taking the pred you need to keep your pain at bay will mean you are more well and able to help your daughter.  This is one of those moments when I agree with Eileen that pred is our friend.

    And anything else you can possibly do to reduce other stress in your life so that you are not overloaded, please take those steps.  Pick your battles!

    Good Luck! ?

    • carol16456
      carol16456 Anhaga

      Posted

      Thankyou . Will probably go up to 6 mg tomorrow as appear to be a little worse as the day goes on and stay there for just over a week as we go away for a couple of days middle next week to a NT cottage which hopefully will be warm and cosey . And then get back to 4 over a few weeks . I was diagnosed with Glucoma just over a year ago and it has improved so much with medication and lowering of preds that they are thinking of taking me of medication altogether in about 4months time ,when they had hoped I would be odor very low on my steroids . So another reason for feeling a bit fed . Still if it takes longer so be it .
    • Anhaga
      Anhaga carol16456

      Posted

      You'll get useful advice from others who've actually experienced dealing with flares as my experience is more theoretical than actual - although I've been trying to reduce to 2 from 2.5, going extremely slowly.  And the pain started to come back, triggered in part I think because of hurting myself while shovelling snow!  rolleyes  So I actually went back to 4, which I'd seen the back of about eight months ago!  But only for a couple of days, felt really well right away.  Now I'm back to 3 and will go back to 2.5 if things stay good at 3 for a few days.  But no more attempts at a further reduction for a while.

      Considering Daniel's advice, if you go to a level which does in fact deal with the pain promptly then, as he suggests, don't stay there too long, you don't really need to, just be very cautious as you taper back down, make sure each level is stable.  

  • Daniel1143
    Daniel1143 carol16456

    Posted

    Others will surely comment...

    Go up for two days. Then half way back one day. That's it.  If you step up your prednisone for a short period, you wont adapt to the higher level. If you stay up at 6 mg for a week you'll be stuck there

    .

    • carol16456
      carol16456 Daniel1143

      Posted

      I know what your saying . And thankyou . One problem I foresee is I don't want to be in a yo yo situation if I come down to soon .

  • Mrs_Hobbles
    Mrs_Hobbles carol16456

    Posted

    Oh my, you have so much stress going on, and now this pain to deal with, you really have an awful lot on your plate. I think as others have said you need to increase the pred for just a few days and see if it helps and then reduce again slowly. Don't try to deal with the pain when you don't have to, it's something you can control whereas all the other stuff you can't. It'll make you stronger and more able to help your daughter through her situation. I sincerely hope everything works out well for you and your daughter. All the best x

    • carol16456
      carol16456 Mrs_Hobbles

      Posted

      Sat up in bed at the moment waiting for surgery to open and husband to wake up . Head pain is excruciating have taken co codamol it seems a little better . Obviously fear GCA and was like this before , shoulder pain has been so bad recently feel that is the cause . Went to hospital with this pain 14 months ago . Nothing wrong found then except could be cluster head aches , migraine ( which always felt have never had ) any way hopefully panic is all I have wrong . Shall have yogurt and steroids in a short while plus two extra prednisone to take my amount up to 6 pred . Last time I went to lister hospital a senior nurse who I couldn't understand hadn't heard of prednisalone or pmr . So am making sure they are in my system . Feel less anxious now . This forum I used a lot a year ago . I wish you well on your journey with this awful condition Carol

    • Mrs_Hobbles
      Mrs_Hobbles carol16456

      Posted

      Oh Carol, wish I'd seen your msg earlier. You shouldn't wait for surgery to open, you should get your husband up and go to the hospital. I've been where you are and it's desperately scary with GCA hanging over you. As you say maybe because your shoulders and neck have been so bad lately might have brought on this headache. Is it all over your head or over your temple region? Please Carol, go to doctor or A&E, whichever is open now! Please let us know how things are going. Please mind yourself xx

    • carol16456
      carol16456 Mrs_Hobbles

      Posted

      Thankyou for your concern I am off to my doctor in a short while . When I had this some 14 months ago I got to A & E and waited 4 hours to be seen . The nurse that I saw had never heard of pmr let alone gca . He wouldn't even let me take my steroids , which I believe made things worse . I had a CT scan and all was ok . So am very hopeful that it isn't gca . Unfortunately will not be seeing my doctor who is treating me for pmr but at least I am seeing someone in a minute .

    • Mrs_Hobbles
      Mrs_Hobbles carol16456

      Posted

      So glad you're seeing someone now, but don't let them fob you off with a migraine. Least they need to do is blood tests for raised markers and if your symptoms are gca, then the high dose of pred to hit it hard. Really hope you'll be ok, my heart truely goes out to you. xx

    • EileenH
      EileenH carol16456

      Posted

      A senior nurse hadn't heard of pred or PMR? PMR I will excuse from someone who presumably trained in a different system and probably in a different language. Not having heard of pred is NOT acceptable - and I would have put in an official complaint. The NHS is in a mess, it needs foreign staff to get by, but they must be able to come up to the same standards of training as native English speaking staff.

      And actually Carol, a CT won't show up GCA unless it is one done with PET and a basic A&E one would have been. You need a good rheumatologist - especially if it is a query about GCA.

      Like MrsHobbles I'm sorry I didn't see the message sooner - but I was in bed, living in central Europe puts me ahead of you!

    • Kdemers
      Kdemers carol16456

      Posted

      The Head pain could be Temporal Arteritis or GCA. Does the top of your head feel tender?  How is jaw?  If PMR has changed to head that could be your problem.  Please tell doctor about change.  Good luck
    • EileenH
      EileenH

      Posted

      Rats! Just read that again - "a basic A&E one would have been" should of course have been "a basic A&E one would NOT have been". 

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