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What is going on?!

Posted , 14 users are following.

DebbieHurts
DebbieHurts

Has anyone had this problem: 2 years of PMR taking prednisone, at year and a half I'd gotten down to 12mg when I got a flare up that has grown no matter my pred. dose, it seems.  At 18mg my SED rate was 53 and I had lots of pain.  The dr had me go up to 20mg and take another blood test, still 53 in pain.  Now I'm starting a new pill, something for arthritis or cancer to take each day at low dose.  Why did the pred stop working for me?  I hate this pain.

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  • DebbieHurts
    DebbieHurts

    Posted

    Eileen, so you think I might have some other kind of inflammation than PMR?  Why did the diagnosis fit me so well two years ago, and why did the pred work so well at the beginning, I wonder?  Is 53 a high sed rate?  I mean dangerous?  Maybe I'm that inflammed, but it hurts more because it is on top of fibromyalgia?  Anyway, my new med is Azathioprine.  I tried MTX for several months, but it just wiped me out.  I've only taken the Aza. a few days - haven't noticed anything good or bad.
    • EileenH
      EileenH DebbieHurts

      Posted

      It is a possibility. Having PMR doesn't "protect" you from developing other forms of autoimmune disease - in fact it makes it more likely overall. So in the meantime your PMR may have been joined by something else - and there is no knowledge about whether simple pred-responsive PMR is likelyto progress to something else. After all, the label you get is based on the symptoms they identify rather than the actual disease process. 

      I suppose it depends what you mean by "dangerous" - I have never had a raised sed rate at all, zilch, firmly in single figures. The sed rate isn't dangerous in itself - it is just a sign that there is something going on. It can shoot up with a cold, chest infection, inflammation of many sorts, in a person who mounts the response. You could have a high level with a simple cold, or I will have a low level with something really nasty, like certain sorts of cancer. That's why when someone appears with PMR symptoms and a high sed rate they should be investigated fairly thoroughly.

      There are a lot of overlaps between PMR and fibromyalgia criteria - maybe your fibro is having a flare AND you have bursitis or myofascial pain problems as well - neither of which will respond as well to oral pred as just PMR.

      Azathioprine is also used for RA - some people don't respond to MTX, it sounds as if you didn't, and aza is often the 2nd line approach. The same applies - it may work, it may not. Unfortunately there is no way you can know in advance what will work for this person. All of them take a bit of time to have an effect unfortunately.

    • linda17563
      linda17563 EileenH

      Posted

      I also appreciate what you have written above, as I have the same problems...Fibro/PMR and myofascial pain...it is a mine field dealing with the pred etc for relief...but have found some relief with Bowen.  Fibro gives me burning pain....VERY tender points/sore skin...and we all know PMR pain....but all give fatigue as well. 

      Click here to view image

      Onwards and upwards, spring is coming....the sun is out here, hope it is where you are Eileen...Thanks again for all info...

    • EileenH
      EileenH linda17563

      Posted

      Your "tolerance" level? What on earth did she mean? My tolerance level might have flipped if someone had said something so daft to me...

      Click here to view image

    • EileenH
      EileenH linda17563

      Posted

      Yes - I thought that was what you'd say she meant. It is thought there may be a small component of that when you yoyo the dose though. If you were on antibiotics would she say you needed rehab when you needed a higher dose for a more severe infection? I do wonder about people sometimes...

      Mindfullness - yes. I think our generation do it anyway - appreciating what you have isn't it?

    • linda17563
      linda17563 EileenH

      Posted

      Quite agree, and living with a man...one has to do mindfullness to keep calm and sane!
    • EileenH
      EileenH linda17563

      Posted

      I find leaving him in another room quite useful there...
    • linda17563
      linda17563 EileenH

      Posted

      Yes, we have rooms we can do different things, him TV, me music/crosswords....wouldn`t cope without!......and him doing the garden and me sitting in it!....  summerhouse for sanctuary....when housebound...There`s ways and means....
    • Silver49
      Silver49 linda17563

      Posted

      Both you and Eileen made me laugh. I agree about leaving him in another room. I'm glad I'm not alone in this respect too. I have just returned from a trip to the smallholding and shop. Now OH has gone out but back soon for his meal before he goes out for the evening. 
    • Silver49
      Silver49 linda17563

      Posted

      Yes. There is an art to it. I enjoy having breakfast on my own. 😀It knocks my day when we share the breakfast table and I'm not a grumpy unsociable person in the morning!😳 I think most retired people have similar thoughts re  being with each other all day.
    • EileenH
      EileenH Silver49

      Posted

      An art? Ah - is that my problem? I'm a scientist...

      I discovered when the girls were little that getting up and being exposed to the 3 of them (them plus dad) really didn't make for a good day. So he fed them breakfast (all laid out the night before, even he could find the fridge, as was their snack for school) and they could get dressed anyway. Kindergarten was next door so it wasn't too long before they could get there themselves. The school bus went from the same place. Sorted. 

      When he worked he'd be away for meetings or doing experiments. No longer - and boy, do I miss that...

    • Silver49
      Silver49 EileenH

      Posted

      I am anything but artistic. In fact my family have made so much fun of my attempts at anything resembling artwork that I have given up.They are usually in hysterics and falling about with laughter at my attempt at stick men! I am a constant source of amusement to them. Ah,well. I am enjoying a blissful night to myself.😀😀
    • EileenH
      EileenH constance.de

      Posted

      When we sold our big house in Durham the woman who wanted it lived next door to her partner - that was how they had met. But for some reason they wanted to live together. I thought what they had was perfect - and asked why they didn't just cut a door between the houses,  They wanted some garden, which we had and that I DID understand.

      So we took one of their houses and money to the balance. 

    • snapperblue
      snapperblue linda17563

      Posted

      Linda- the challenge of retrement- "but to be with each other all day every day."

      As Kim Wiliams said "For better or worse, but not for lunch."  She advised each member of a retired couple to leave the house for a good part of every day, doing separate things. Not only will he not be there, looking over your shoulder and trying to improve things you have done perfectly well for decades, but you'll both have something to talk about in the evening. 

       

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