What to do.....???

Posted , 11 users are following.

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

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  • 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!

  • 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.
  • Posted

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

    Stay well .

    Take care.

  • 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

    • 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.

  • 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
  • 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

    • 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

      🌸

    • 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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