Taper and thyroid

[KCRoyals]

Hi, for the third time I've managed to get down from 15mg of Pred to 1mg ( tapering 1mg each 8 weeks). Now it appears that it's affecting my thyroid which is aching a little. Anyone have/had similar problems?

[SheffieldJane]

Hi KCRoyals, I have had Graves' disease since 1984 and have hardly given it a thought. Recently my thyroxine dose was reduced, so PMR does have an impact. Pred has led to a thickening of my neck and I do get significant symptoms around that area. It almost looks like a small goitre. I would have your Thyroid hormone levels checked in case it's trying to join in. You are on such a low dose as to be practically negligible as far as side effects are concerned. Your neck pain could be a PMR symptom. Would you have to go up much to get to the point where you didn't have this symptom?

Well done for an excellent taper! It really isn't a race to zero. Some of us will need a teeny dose, maybe forever. Personally, I would settle for that.

Let us know what happens.

[KCRoyals in reply to SheffieldJane]

Thx. Me too. There's too many balancing acts with PMR.

[PMRpro Ambassador]

Like SJ - I'd think it were possibly a PMR problem - flares aren't always the same. You saying you have got to 1mg for the 3rd time suggests the previous twice your body/PMR wasn't ready for it. Maybe it still isn't.

[nevagivup]

PMR for 9 years. Down to 3.5 most of this year, with a flare and back up to 10 mg in July with tapering. During an MRI scan of my spine last November it was discovered that I have a nodule on my thyroid. There followed an ultrasound scan of thyroid, appointment with Endo, and at 3 month intervals ultrasound fine needle biopsies, all within this year. In the second FNA they had to do it twice, for not enough cells in the first attempt. The third biopsy had to be done twice for the same reason and this time it was painful, really. My thyroid neck area was sore for a week. But it appears that there were again not enough cells and a request has been made to do a fourth FNA. I did overhear the word "calcified" in the scan room. I am minded to refuse. They are at the same time trying out two types of ultrasound scan simultaneously. I don't know if the nodule and the Pred and PMR are allied, but possibly? However, because I am barely functioning at all and my adrenals seem incapable of waking up. The test will prove it. If another FNA is reported as important I may consider it, but certainly not until my general condition has vastly improved. Have you talked to your doctor about your thyroid/neck pain?

[KCRoyals in reply to nevagivup]

Hope things improve for you.My Doctor seems to think it's the thyroid and who am I to argue. Awaiting results from blood test.

[nevagivup in reply to KCRoyals]

My thyroid function tests are all normal, but I have thyroid antibodies, which can cause nodules. Hope your test is good.

[KCRoyals in reply to nevagivup]

Thx , can't wait for test results.

[PMRpro Ambassador in reply to nevagivup]

Is there no other option? My husband had prostate cancer dx'd in the spring. The Gleason score was OK - would he like to do watchful waiting? No, radiotherapy now was fine - repeated 3 monthly check-ups and repeated needle biopsies did NOT appeal!

[nevagivup in reply to PMRpro]

Sorry PMRpro, I left off the word Synacthen with test, so that was confusing. I think of my thyroid as of no consequence at this stage. My priority now is to find out if my adrenals are functioning. Booked in for that test on Tuesday, but I am having cold feet. Really scared of the possibility of anaphylactic reaction, having read a couple of articles that the test should not be done if you have asthma. Others say tell the nurse on arrival if you have asthma. So tomorrow I shall phone the Endo investigation clinic and ask about it. I am so low physically now, having been 9 years on Pred, with this year a nightmare of a struggle, that I fear such a severe reaction could kill me, no matter how much adrenaline they pump into me!

[PMRpro Ambassador in reply to nevagivup]

Asthma is scary - my grandaughter had really severe brittle asthma and the doctors got to panic stage a few times in resus. Not nice for her nurse mother who was watching. But Nome went vegan about 18 months ago - and the asthma is SOOOO much better, never gets that bad now and she has lost all the pred weight weight she had gained too as pred was the only thing that kept her out of hospital. She'd gone from a UK size 8 to an 18. Back to a 10 now. The difference is amazing.

All the best. Though of course all the synacthen test does is show if they CAN produce cortisol - doesn't mean they are, too many other things involved.

[karools16 in reply to nevagivup]

I am an asthmatic and had the Synacthen test done in June. Despite not having any fatigue, and feeling quite well, the results were Addison's Disease. The test was done at 3mg Pred. After a 'bumpy' start, I am ok with the diagnosis.The test, itself, is nothing to worry about. Will think of you Tuesday. Trust all goes well.

[PMRpro Ambassador in reply to karools16]

Glad to hear things have settled down.

[nevagivup in reply to karools16]

Thank you!

[nevagivup in reply to karools16]

Oh, that is reassuring. I am just waiting or the PIU nurse to phone me back to discuss my concerns. I'm not usually neurotic about these things. But having read that the Synacthen should not be given to asthmatics it put the wind up me. Maybe these days they have found a way to modify it to not cause that reaction?

[nevagivup in reply to karools16]

Karools16, was your PMR and Pred the cause of your Addisons, or did that arise on its own? What treatment are you having for it?

I should not have fretted, the Synacthen test was fine. Brilliant PIU unit and lovely, kind, warm and caring nurses who reassured me it would all be fine. The only reaction was clownish bright red splash marks on my cheeks that soon faced. But today I am so exhausted, despite 8 hours sleep last night (wow!) I'll chase for results late next week if I don't hear anything. It would be great to have more energy by Christmas Day.

[karools16 in reply to nevagivup]

Hello. Firstly, I have GCA. 12 years now.Yes, I guess the long=term use of Pred could be the reason for Addison's, but I couldn't say for definite.Usually, with Addison's, people report extreme fatigue. I didn't have that at all. It came as a huge shock, and, at first, I refused to accept the diagnosis. I was told, by the Endocrinologist, to come off the 3mg Pred, immediately, and start Hydrocortisone, instead. For 3 months I had a ghastly time. Dreadful stomach aches, and when I started behaving strangely, and out of character, I said I would stop them and return to Pred. Many people stay automatically, on their Pred, at a higher dose.After 2/3 days back on Pred, I felt fine. 4mg.

I am so pleased all went well with your Synacthen test. I thought of you Tuesday, and said a prayer for you.

Hope your results are good.

[nevagivup in reply to karools16]

Thank you, that was kind of you. I'll post again when results come through.