GCA Update

I have been feeling pretty ill for some weeks, or even months now I guess. I am on 20 of Pred, no tapering for months. I have developed severe shakes which I did years ago on Prednisone. Is this more prevalent at a certain dose? I've lost 11 lbs in 4 weeks, not particularly nauseated until I try to eat something and then just can't, so drinking high protein shakes. I was started on MTX a month ago, tolerated two doses of 12.5 but felt more fatigued when I went up to 20 for the third (and future ) dose. Was told to skip a week and restart at 7.5 which I haven't done yet. I spoke with my rheumy yesterday and he wants me to have a TAB which I never had done at diagnosis. We both know it's probably a ridiculous thing to be doing now, but lying in bed last night I had a Eureka moment. Wondered if the purpose of these biopsies being done past when it would probably be accurate was more to cover the doctor. It still is referred to as 'the golden standard ' and if a patient isn't worked up completely there could be questions down the road. Who knows. This fellow has stellar qualifications but common sense sometimes is more beneficial.

So that's my update, no replies really necessary except maybe the shakes one. Oh and was also wondering if anyone has had a problem/reaction, an immediate one right after taking a dose, to magnesium?

Cheers

9 Replies

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  • Being a cynical type I think you may be right about the golden standard. It does seem nowadays that common sense is not included in the curriculum.

  • piglette,

    I really think there is something to this idea, although my rheumy kept saying the difference was that I was in a flare now.

    Cheers

  • I'm astonished that a biopsy which both you and the specialist acknowledge would be useless is suggested this late in the day. I think it's pretty straightforward procedure, but every surgery, however minor, has some risk.

    Why not try to get him to order some tests to establish your basic health status. I'm thinking things like blood serum levels of various minerals like calcium and magnesium, possibly your Vitamin D status, iron, that kind of thing. Who knows, maybe that would reveal something which could be rectified and might make you feel a lot better. I'm just thinking that your nutritional status may be a bit compromised if you've been losing weight and feeling so nauseated you can't eat properly. Even continued use of the high protein shakes might be unbalancing things somewhat.

    💕

  • HeronNS,

    I just canceled the biopsy for a special MRI.

    I have blood work of everything you've suggested and more, frequently, and have a dietician visit to monitor my nutrition. She was here just yesterday. I felt exactly this way several years ago when on Prednisone the first time and lost 30 lbs and was in bed for several years. The only conclusion then as now is that I don't do well on Prednisone , was actually told last time by one of my doctors to never to go on it again. Well that didn't work out too well with GCA.

  • MRI sounds like a much better idea. You have had a terrible time. What did the bloodwork tell you? Were things normal? After GCA is dealt with could you take a different medication? I know some people who can't tolerate pred manage with hydrocortisone, but I don't really know more than that.

    Hugs.

  • HeronNS,

    Thank you.

    I had a cranial MRI in January - normal - but this is a new type apparently.

    CRP and sed rate were normal last week, but only my CRP was elevated at diagnosis for both PMR and GCA and with flares of GCA (I didn't have any flares with PMR). All other blood work was normal, WBC up a bit, no doubt Prednisone related, but down from two weeks ago. Everyone seems at a loss as they were the first time around when I was treated for auto immune inner ear disease (AIED). One doctor told my sister-in-law that he didn't think I was going to make it, and I thought that myself a few times. She only told me this when I was on the mend of course 😊

    So this will be round two 6-7 years later. I see my GP tomorrow which is always frustrating. She knows how ill I am on one level but I think she is frustrated too because she doesn't know what to do. And I admit it's pretty hard to know when your blood work and tests (extensive) come back 'normal'. I was sent home twice recently from the ER for this reason.

    Last time my daughter moved in to look after me. That daughter now lives here in town but has her own challenges being a single mum with a high needs child. She's certainly here as much as she can manage but I think I need more help so will talk to GP about this.

    Thanks everyone for your replies. Stay as well as you can.

    Cheers

  • With all your blood tests, I would assume your liver enzymes are monitored as you are on MTX. MTX made my liver enzymes go to 6 times the normal level & I had nausea too. It all improved when MTX was stopped.

  • Yes cdenoncourt, everything was normal. I had only just started on MTX and had had only three doses so far, but thank you for the reminder.

    Cheers

  • Would it be possible for you to have a PET scan? After months of intensive tests and scans this showed massive inflamation all over my body. I had been on steroids all the time but was still very ill. Hope you find some help soon as you are very poorly. Take care Jen

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