Results are in!

2 weeks ago I got my biopsy or rather, the non result. The bit of artery was insufficient, there was no inflammation in the bit they got but the lab says it was insufficient , also I had been on pred for 2 weeks prior to biopsy. My rheumatologist has decided that no inflammation means no risk so is cutting pred by 5 mg a week for the next month then slowly. Initially I was delighted that he was confident and that meds Were being greatly reduced. Now, not so sure.

So far I am down 10mg, dreadfully scalp sweating, general aches and pains particularly between the back of my neck and head. Absolutely exhausted and weepy.

Please tell me this levels off soon?.

5 Replies

  • If it was me, I would seek the opinion of a second rheumatologist if the present one believes that "no inflammation means no risk". It is perfectly possible to have GCA affecting the temporal arteries in spite of a negative biopsy for the simple reason that the large cells they are looking for can escape the tiny portion of artery removed/biopsied - even the lab have said it was "insufficient". It isn't surprising that you are having withdrawal side effects if you are reducing by 5mg a week but it is equally possible that rather than "side effects" they could be symptoms of returning inflammation. I'm sorry if this doesn't sound very helpful, but you need an expert opinion here, doubtfullee, and, as I said previously, if it was me I would be seeking a second opinion.

  • I agree 100% with Celtic - that is not a good rheumy in my book. The lab said the sample was insufficient and even when a good piece of artery is taken they don't always find the cells, it is said to be inconclusive in more than half of cases - and inconclusive is the best you can say since you can have arteritis without it affecting the temporal artery. No inflammation does NOT mean no risk - whatever one or two rheumies I know have said to their patients.

    There is a lady on this forum who was told that by her rheumatologist - "the biopsy is negative so we don't have to worry about GCA". The symptoms returned when the pred was reduced and she had the presence of mind to insist at the hospital that they do more investigations. She had a PET/CT scan (I think) which showed inflammation in her aorta - you can't tell if there are giant cells with that but it shows up the arteritis (it is rather difficult to biopsy the aorta). Said rheumatologist didn't have the courtesy to tell her to her face but sent a registrar with the result and prescription.

    Sorry to be so depressing - but I'm being realistic.

  • Inform your doctor that 50% of the biopsies come out negative. He needs to treat your symptoms. He is not doing that. Sounds like a bad doctor who doesn't know what he is doing. I believe he's hurting you. We have to be very careful with this drug and our bodies and have to remember that it is our body. please look for another rheumatologist. I had to change too. Good luck.

  • Hi doubtfullee, have only just seen your post., so not sure why you are taking Pred? I have been on it since lasr April as I had Temporal Arteritis. I am down to 15mg a day from 60mg. The main side effect I got was " Moon-face" which has made me very depressed. I'm not exactly in my prime(63) but don't need added abnormalities.

    Anyway what I wanted to say was you are not on your own.

    Good luck x

  • Thanks everyone for your replies.

    Lin 63, I was diagnosed with PMR and that's why I am still on Pred. GCA was suspected hence the biopsy , the interpretation of the results seems to lack logic, I spoke with my GP but he said to stick with the consultants treatment plan. I think it's time I sought a second opinion. Now I need to find a good doctor in Scotland. Treatment shouldn't be this difficult.

    It is a lonely feeling, I am too tired to do the things which keep me in touch with others, neighbours are a field away and my husband works all over the place so mostly I am home alone. Still that means I get peace and quiet when I need it :-). It's lovely to have the internet connection with you all. Never have people been so well connected!

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