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What to do.....???

Posted , 11 users are following.

IssyR
IssyR

Hi again...i've posted a few times on here but not for a while. I had changed gp's and after a couple of appointments we seem to be singing from the same hymn sheet. I was in quite a bit of pain and really fatigued so upped my pred from 7mg - 10mg and although i still had niggly aches and pains i was satisfied i'd done the right thing. Over the past couple of months i've had LOADS of different blood tests...the first really since diagnosed...they all came back normal except a liver one which has been looked into and then during the week i was told my vitamin D level is VERY low 25..(docs words not mine) she's told me to wean off pred and alendronic acid as the Vit D deficiency must be to blame as no other test points to PMR...so this week i'll go down to 9mg next week 8mg and so on. I said to her what about the pain and she said pred isn't a painkiller so it won't make any difference, hopefully the vit d capsule i've to take will kick in and i'll feel better. Steroids just make people 'feel' better not make the pain go away. I have a horrible feeling i'm going to very quickly feel awful...i'm trying to keep positive but i don't have much hope

0 likes, 28 replies

28 Replies

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  • tavidu
    tavidu IssyR

    Posted

    I Issey. Sorry but I tend to agree with you, I feel that if you follow your doctors advice you will suffer. Good luck and I hope I am wrong.

  • constance.de
    constance.de IssyR

    Posted

    Wow!  If pred doesn't deal with pain why the devil are we all taking it??

    A lot of us have been taking vitamin d capsules for years and we are all still in pain!😡

    Where did your doctor study medicine I wonder?

    • Juno-Irl-Dub
      Juno-Irl-Dub constance.de

      Posted

      Well said!!   I was beginning to wonder if I should have been taking Vit. D for the past 3 years . . . . 
    • iellen32
      iellen32 constance.de

      Posted

      Agree, Constance!!!!

      Besides this tricky GCA I have Osteopoenia so I take Calcium, Vit D3 5OO0 ( because the Pred which is good for the Arteritis, bad for the bones though)

      The weather is so much better here in GA so I take advantage of that staying under the sun every day to help better absorb the Vit D.

      Thank God , Pref is not our enemy!

      xxx

    • Elijo
      Elijo iellen32

      Posted

      Hi Iellen,  Don't forget that as we age that the body does not absorb as much vitamin D, even when you're in the sun, as when we were younger and that is who MDs like us to take more vit D as we get older.  I don't know your age, but it appears that most of us on this site are older!
    • iellen32
      iellen32 Elijo

      Posted

      No, I do not rely on exposing myself under the sun when I can!

      As I am under proper treatment for my GCA, I take Pred I go for DEXA to check on my bones as I have .Osteopoenia and I have a specialist to take care of that, besides my rheumy and a GP.

      Sun alone is not the treatment for us!

      Thank you anyway for the alert just in case I was ignoring the point.😊

      Stay well

    • Elijo
      Elijo iellen32

      Posted

      Thanks for your response.  You and most of the others on this site are VERY well informed and knowledgeable, so helpful.    I also have osteopenia, and have had it for a few years, being an older woman.  I'm not doing anyithing specific for it.  I used to take fosamax a few years ago, but heard so much negativity about it that I  quit.
    • Elijo
      Elijo

      Posted

      Addendum:  I did have a dexa recently and it was approx. the same as the one a few years ago.  Hallejuh!
  • EileenH
    EileenH IssyR

    Posted

    "after a couple of appointments we seem to be singing from the same hymn sheet" - no, SEEMED, I venture to suggest.

    If it is all due to vit D deficiency then pred doesn't usually help, only replenishing the vit D will do that and that is where she should start, by prescribing very high dose vit D, 60,000 IU/week, either in a single dose or as 3 x 20,000 IU, for about 10 weeks. A low dose won't work for months, if at all - it MUST be high dose and for long enough.

    There are no tests that "point to PMR" - 1 in 5 patients with PMR have no raised ESR/CRP and the raised liver test  you mention MAY appear (depends what it is, alkaline phosphatase can be). PMR is diagnosed on the basis of the clinical examination, the symptoms - and maybe raised ESR/CRP but that, as I've said, isn't 100% accurate.

    She is wrong about pred. She's right it isn't a "pain-killer" but it doesn't just "make people 'feel' better but not make the pain go away" - the pred combats the inflammation which is caused by the underlying autoimmune disorder attacking the body in error. The inflammation leads to swelling and that, in turn, causes the pain and stiffness. Pred relieves the inflammation and that relieves the pain. If you reduce the pred to a level that won't manage the inflammation then the symptoms will come back. It isn't a painkiller in the pure sense - but if you have PMR the inflammation will return and so will the pain if you stop the pred.

    I do hope this GP either is humble enough to admit she may be wrong if the symptoms come back or you have access to another GP with a bit more common.

    • iellen32
      iellen32 EileenH

      Posted

      Oh Eileen well said!

      I wonder what we would do without your massive knowledge and advices!!!!

      xxxxx

    • IssyR
      IssyR EileenH

      Posted

      Eileen, everything you've said is exactly what i think/feel...that's why i'm so worried..i really hope when the pain goes back to where it was she listens...feel i've had to say " so what do i do about the pain" toooo much....
  • Juno-Irl-Dub
    Juno-Irl-Dub IssyR

    Posted

    IssyR,  I'm not a doctor but it sounds to me as if you have 2 conditions (PMR and Osteoporosis)  and your doctor feels she has an explanation for one of them ie. OP. She has found that your Vit.D is very low and that can be orrected by supplements. ( Low Vit. D is one of the causes of OP.)  But OP does not cause pain unless you have had a fracture. PMR does. And the inflammation (paiin) of PMR is kept in check with Pred. and no other drug. You also know this - hence your apprehension re. reducing and stopping your Pred. 

    Finally your doc. said  "as no other test points to PMR". What "other test"? As far as I have learned from this forum there IS no test that confirms PMR. 

    I think you need to return to her and tell her you have NO confidence that Vit. D tablets are going to do one damn thing for PMR PAIN and discuss again your Pred. slow reduction . . . 

    By the way it IS good news that you have found an explanation for your OP!

    J

    • EileenH
      EileenH Juno-Irl-Dub

      Posted

      Low vit D doesn't inevitably lead to osteoporosis - my vit D was about 20 at one time and my bone density on pred didn't change at all and was at an acceptable level.

      I assumed Issy is taking AA because the doctor automatically handed it out alongside the pred as many do believing it is essential to prevent OP developing - she can wean off the pred so can stop the AA as well. 

      My GP told me recently that she thought I felt better last year because the slightly higher dose of pred would have helped! Honestly - I wonder where they get their ideas from... 

    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      You're right.  That must be the reason Issy is taking AA as she didn't mention having had a Dexa scan gjiving a diagnosis of OP . . . 

      The reason I mentioned Vit.D as a  cause of ? OP is that it was postulated that it was both my Vit D levels and woefully low protein intake over the years that caused mine . . . ( I felt it was the few months of high dose Pred. but this was disputed).   J

    • EileenH
      EileenH Juno-Irl-Dub

      Posted

      Probably both/all 3. I think high dose pred does get blamed for more than it really is guilty of - all the more reason for everyone to be sent for a dexascan asap when given pred. 

      Protein intake? 

    • IssyR
      IssyR Juno-Irl-Dub

      Posted

      Juno i haven't got OP...not sure why you think that xx
    • Juno-Irl-Dub
      Juno-Irl-Dub IssyR

      Posted

      Issy, sorry about that. I  just concluded that because of your doc. prescribed AA for you. But, as Eileen pointed out,  it was probably being used as a 'bone protection' (or OP prevention)  med. . . . 

      Anyway, better off than on AA... . .    

      Kind thoughts,  J   

    • IssyR
      IssyR Juno-Irl-Dub

      Posted

      Thanks Juno, i've never had any kind of scan for the pain...it's soooo frustrating, take care xxxxx
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