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Sorry to bother again......

Posted , 13 users are following.

lynda62707
lynda62707

Hi again,

So I'm going to make an assumption that anyone reading this already is up to date on my story.

So, I saw my Rheumy on Thursday. I told her I'd been able to get down to 3mg for about a month but had a flair and with the help and info (and my own decision) I'd obtained from this forum, I went back up by 5mg.

she was NOT happy.

however, she also was aware of what a TOUGH few months I'd had (and continue to be having), she understood.

but her instructions were to immediately decrease by .5mg everyday till I'm back to 3mg, then stay on that for 2wks....then down half mg. every week there after.

she said I was a "very complex, complicated case", due to all my problems😢😢.

Well DUH!! but I Sure didn't ask for ANY of this!

anyway, (I know I'm rambling...sorry), today my right shoulder and my right jaw (1st time) are 'killing' me!

I'm SO tired. I don't want to be in pain anymore. I'm completely overwhelmed. any words of advice or just kind words would be GREATLY appreciated.

I'm trying so hard to not 'dump' any of my fears on friends and family.

thx, Lynda

0 likes, 23 replies

23 Replies

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  • EileenH
    EileenH lynda62707

    Posted

    Is 5mg working? If so, your rheumy is not doing a good job and really ought to get up to date! At 5mg and below the adverse effects are minimal - but the benefit for the patient can be immense.

    Are they going to do any treatment for the lymphoma? It is rare but both Hodgkin's and non-Hodgkins lymphoma appears in the medical literature as a cause of polymyalgic symptoms. Treatment of the underlying lymphoma then led to a resolution of the PMR.

    You are a complex patient but that isn't your fault and since you have a management that works, she should be letting you continue, at least for the present.

    I suppose there is no alternative to her?

    • lynda62707
      lynda62707 EileenH

      Posted

      hi Eileen, No, at the moment my doctor is just monitoring me. I've got to have bloodwork every month (just had it last Thu. and am waiting for results). He said if there's no changes by 1st of year, we'll figure out where to go from there.

      they also think I may be having some internal bleeding as about 2mo ago, I had to have a blood transfusion due to being almost void of iron (I think it was less than 10).

      Next on "the list" is an endoscopy and colonoscopy.....oh yay! can hardly wait! 😥

  • ptolemy
    ptolemy lynda62707

    Posted

    What is wrong with the woman? It is doctors like that, that you wish PMR on, which I suppose is not very charitable of me, but for goodness sake, she should learn a bit about the illness, she is a doctor after all.

  • Silver49
    Silver49 lynda62707

    Posted

    I think you need to find another Rheumy, Lynda. I'm sure they wouldn't put up with unnecessary pain so why should you?

    As far as friends go I would be saying something to them about wanting to go out but although the spirit is willing the flesh is weak. It is important that they realise you do want to go out with them and ask them if they will keeping inviting you because there will be times in the future when you will be able. At the moment you don't know when that will be but you still want their friendship. One day it could well be the other way round.

    • lynda62707
      lynda62707 Silver49

      Posted

      thanks Silver.....I do most certainly tell them how much I want to go (BECAUSE I REALLY DO!).......I'm (or used to be) a Very social person.

      I will take your advice about continuing to ask me tho'. I've not done that and probably need to.

      thanks for the reminder.

  • Anhaga
    Anhaga lynda62707

    Posted

    I did the usual little google search and have found that prednisone is, if anything, likely to be helpful if you have lymphoma. There should be no need for you to taper too quickly on account of that diagnosis. As Eileen says, if your PMR symptoms have been caused by lymphoma then the symptoms should be alleviated as treatment is given for that condition and then the pred taper will be much easier. As long as you can access the amount of pred you need I doubt there will be harm to you in keeping the dose at a level where your pain is manageable. Hugs.

    • lynda62707
      lynda62707 Anhaga

      Posted

      thx Anhaga for caring enough to do research. this is what I mean when I say support and empathy!

      You'll really come through!

      BIG HUGS😘

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