I haven't managed to find a pred dosage I am happy with

Posted , 8 users are following.

I enjoy reading all the contributions from members of this forum it makes me feel I'm not the only one going through this pmr minefield.

At present I have just reduced to 9mg per day and I am far from being pain free. I have been down this road so many times in the last 2 1/2 years and can honestly say that even on 20mg I am still in pain. The only time pred really worked for me was the first time I took it at a dosage of 20mg. Neither my GP nor myself know how to treat this very painful condition. My GP is sending me to see a rheumatologist at the end of the month to see how to manage it better or to look and see if it might be an altogether different condition.

I was really hoping I would go into remission or beat this altogether but so far nothing! l'm really tired all the time and getting quite depressed too.But having said so I still fight every inch of the way and make myself do things and go out etc. I hope there is someone out there who could give me some advice as to what I should do or expect to do to try and feel better.

0 likes, 9 replies

9 Replies

  • Posted

    Have your thyroid checked. When I started my PMR medicine for the first time I wasn't getting the kind of relief I thought I would get. Even though we kept upping my dosage I still have joint pain. Well around the same time it was time for my annual thyroid check. Lo and behold I found I needed to up my dosage on my thyroid medicine. Once I got my dosage adjusted properly all pain disappeared.

    • Posted

      Very interesting, because I was having a flare on 3.5, went up to 6 & 7, still discomfort especially in my shoulder joints,causing difficulty lifting my arms.  My lab work showed low TSH and thyroid med was increased by my MD this week, so am waiting to see how that affects me.  He didn't want me to take more than 5mg. pred now and thought that some arthritis might be the cause of some of my discomfort.  This AM I took 2 alleve (naprosyin) 220mg. each. and shortly after I began to feel better.  When I was first dx the analgesics did NOT help me at all and I was reluctant to take them now, but did decide this AM to try it;  then I took my 5mg. after breakfast, and now feel good!!!  I do hopethe additional thyroid will kick in and help the discomfort, I don't like to rely on analgesics continually.       Good luck, Elinor

  • Posted

    I could have written your posting myself, I know exactly how you feel, and wish I had the answers....

    ​I fight every inch of the way, otherwise I would be housebound (more than I now am!) but fear I pay the price....

    ​Have to say my rheumie has been no help to me, very dogmatic in her ways, and won`t listen to me.....thank goodness my doctor does....I wish you luck....and keep us posted!

  • Posted

    Maureen, there could be underlying causes beside PMR, like inflammatory arthritis, or RA in my case, when the body hurts   A Rheumatologist should be able to figure it out.  I started on 20 mg of prednisone 2 years ago, and I am down to 6 with Eileen's slow method, but I am often in need to take a couple of Tylenol to be more comfortable and make it through the day.

  • Posted

    Have you ever had your Vitamin D levels checked.  If not, ask for it to be done as fast as possible.

    Low Vitamin D causes aches and pains exactly like PMR.

    Mine was low and I was given 40,000 units per day and it was unbelievable the difference.   Second blood test, one month later and then 20,000 units per day for 10 days.  Level up.  I have taken 1,000 units per day for over two years.  That is the daily maintenance dose once your levels are correct. 

    In the PMR GCA North East website, in two of their Newsletters there are articles on low Vitamin D.

     

  • Posted

    Meant to add, the Vitamin D test is an exclusion test in the Diagnosis of PMR, quite often it is missed and not done and it should be because of the Aches and Pains associated with low Vitamin D.
    • Posted

      A could be a reason......I will check up on this with my rheumy.

      Thanks for the input.

  • Posted

    Do you have blood tests regularly?  When I first was diagnosed with PMR, I was already on medication for an underactive Thyroid.  Annually, I get a complete blood work-up.  My thyroid med had to be upped to .50 mcg and my Vitamin D was low so I take 1,000 mg.  An underactive thyroid will make you feel extremely tired.  I am presently down to 1 1/2mg of Medrol.  (started at 16 mg medrol in July 2014).  Each time I taper, it takes awhile before I feel good again.  I am walking 20 minutes a day, 4 times a week and have lessened my red meat intake.  I also added Tumeric to my diet a week ago and though it's kind of early to know if it is really doing good, I have, however, seen a change in that my fingers, wrists and ankles seem better.  Currently, I am experiencing aching in my lower back.  I'm hoping it will eventually go away once my body gets used to the recent taper.  This is a very slooow process.  There were many times over the past 2+ years that I felt discouraged.  My faith and determination helped me through.  Hang in there.  You will find lots of support on this forum.

  • Posted

    Hi, sorry to hear you still get pain; when mine starting playing around my Dr said we need to start ticking other boxs, so we went through a list. I was due for my mamagram and had it done and they found cancer in my milk duct, very lucky it was caught early and contained. I had the operation yesterday : Just a sugestion that if you still have pain it could be something else causeing it.... Good Luck Dea 

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