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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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  • iellen32
    iellen32 IssyR

    Posted

    Keep you hope alive as you are doing all is needed!

    Our positive attitude must walk together with our treatment, correct diet, etc, etc.

    I am sure you and your doc will let you get the expected result.

    Wishing you the best , I will keep following this discussion, so please let's know how things evolve!

  • Silver49
    Silver49 IssyR

    Posted

    Oh,Issy. That sounds very difficult for you. I remember all that you are coping with and have been wondering how you are managing. Glad to hear you now have a good GP but I wonder how your pain is going to be when you drop the steroids. A blood test I had in December gave no indication of PMR but, thankfully, my GP knew that it was not indicative of it having gone in to remission. I would be very careful of reducing although I am aware that low Vit D levels can cause problems. Please let us know how you get on. Someone with more knowledge than me will advise. Best wishes and I hope that you can go back to your GP for more help before it becomes a problem.
  • iellen32
    iellen32 IssyR

    Posted

    Yes, IssyR please, be careful saying NO to the steroid!!!

    Stay well .

    Take care.

  • kadge
    kadge IssyR

    Posted

    I was diagnosed with low vit d last year after having pain in shoulders, back, being so fatigued and brain fog. I took vit d high dose 10,000 units every day for 12 weeks and then 2,000 maintenance dose. 12 months on I am still in pain which now includes my hips, thighs and ankles, still fatigued and have brain lapses. Vit d level is fine now but still have symptoms doctor will not give me pred trial says steroids will make anyone feel better. Waiting for a phone call Tuesday to see what these blood tests reveal and what deficiency they will fob me off with this time.

    If you have doubts please put up a fight don't let them fob you off 12 months of pain is not fun

    • EileenH
      EileenH kadge

      Posted

      What tripe!  Where the hell do they get this idea that "steroids will make anyone feel better"? If you have all sorts of things that resemble PMR it doesn't - has no effect on fibromyalgia for example. If it was so magic they could make everyone feel better. 

      Try a different GP first and if that doesn't help, tell the GP you want to be referred to a rheumatologist. That may have problems too of course - but they might at least look for another reason for the symptoms you have.

  • IssyR
    IssyR

    Posted

    Thanks for all your replies, i'm soooo completely done withe the whole thing...15 tablets i took this morning..200mgs tramadol for nerve damage (4x50mg) 9mg pred (1x5mg 4x 1mg) 2 paracetamol, 1 vit D capsule, 100mg setraline - depression (i wonder why??) lisinpril and bendrofleumathezide..!! i'm only 52 working in care..i hear all the time about service users "what a shame they have to take so many tablets" little do they know...I know stress can cause a lot of physical problems and i think if i told you my last 3yrs you'd wonder why i'm still here but i think (like i've said before) my pain is being put down to emotional. I believe it's PMR because pred worked so fast in the first place and when i had a flare up a few weeks ago 3mg extra a day made a huge difference....lost
  • IssyR
    IssyR

    Posted

    I never thought at 52, if i had to move i'd rattle

    but life just now is difficult, in fact i'd say a battle

    i feel like i am drowning, in a sea of different pills

    all prescribed by doctors, to combat all my ills

    the very act of taking them, goes right against the grain

    i wonder if i'll ever feel, like a 'normal' person again

    Is it PMR, should i be on pred, or a deficiency of vitamin D

    whatever it is, my feeling's this. it's all just pain to me

    i try so hard to keep my head, from ducking under water

    i know i've folk who love me, my grandkids, sons and daughter

    So for them i'll soldier on, in the hope that things improve,

    ​who knows this vit D supplement, may be the perfect move

    • iellen32
      iellen32 IssyR

      Posted

      Go forth,IssyR, take your vitamin D - I am taking D3 5000 IU - I am on Pred and Osteopoenia besides my GCA. Do DEXA every year and the DIET recomended for inflammation,

      bones, you name it.

      I probably already sent you a reply today. Tons of emails!

      Take care

      🌸

    • Elijo
      Elijo IssyR

      Posted

      That's a great poem, keep your sense of humor!  I used to write a lot of poetry.  It can be fun, although PMR is no fun  Good luck!
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