Asking for yet more expert advice from you wonderful people

[kellykel]

I had been reducing per DorsetLady’s plan pretty successfully down to 24 in April. About 10-5% a month.

In May, I was suddenly having consecutive days of literally only 5% in the gas tank. Very very odd.

Quick background:

Have been on this GCA journey for 3 years now (2 years on prednisone after a tough non-diagnosed year) and have tapered and gone up again for various reasons. I.e. from 40 to 0 to visit Mayo - they wanted as low a dose as I could before tests (it was hard and took 5 months - fast to me). Unfortunately, they were baffled as to exactly what autoimmune issues I had - classic GCA symptoms but normal inflammation markers (PRMpro, you’ve set me straight on this- a percentage of us do) and I was in moderate adrenal insufficiency. So, they put me back on 20 and said to taper to a dose that minimized side effects vs disease symptoms.

I had gotten to 14mgs then got very very sick. Bad upper respiratory virus. Ended back up at 24mgs and after virus resolved, got back to taper as directed here.

Then the energy depletion started; like no prednisone was getting in my system. Deep and pretty intense muscle pain; increased 24/7 unremitting head and jaw pain, deep fatigue.

Other symptoms (heart palpitations, weird and scary panic attacks and mood problems for hours - never had before to this intensity ever) showed hyperthyroidism. They said it would burn itself out in 3 months - called it Silent hyperthyroidism.

It’s just gotten worse. And my thyroid numbers of yesterday are indicating increased hyperthyroidism. Not really burning out is what I’m thinking. So back to drs this week.

In addition, labs show my hormones are presenting as a post menopausal woman - low on estrogen, progesterone, etc. I am 55 and had just started menopause a few months ago.

So, with this hormone mess, it seems to explain some things about these new, severe and long despairing and panic episodes; unimaginable fatigue; feeling like steroids aren’t working, etc. Again, never had these before to this level.

In desperation, I did a “bump” of prednisone after consulting this site:?First 5 mgs. No change in 5 days, so up another 10.

Was told if I kept in 2 week window, I could taper back down pretty quickly. That’s not happening. As soon as I taper, all the above new symptoms are back in full force. Added dose cuts them in half.

Oh, forgot to add new results now showing pre-diabetes!

All results came in yesterday.

What a worse to worsening feeling I have.

Questions;

I’m not tapering back well. Go right back into only 5% energy for long long periods of the day; deep muscle pain; scary and long mood episodes, etc.

Being at 36 prednisone minimizes and helps all of that. Not all of it, but helps a lot.

I’m devastated being at 36 again, but also scared about what all is going on.

Had anyone had experience with this type of perfect storm?

I will be seeing a new rheumatologist to help with the prednisone, as I was told by most recent endocrinologist I needed off prednisone and on to a biological (she was quite disgusted with the effects she was seeing on me-skin paper thin; muscle wasting; swelling (I have been in low carb diet and have maintained my initial weight with care, but have bloating still.

She said I’d need a rheumatologist to do that - not her specialty. She said the Silent Thyroiditis would burn itself out - but it is just getting worse, so was also recommended I see an internist, especially with other menopausal hormone depletion and prednisone-diabetes issues.

Boy, I feel the worst ever in 3 years. Quite overwhelmed and under-helped.

Hopefully the next drs will dig in with me on all of this.

Guess I just feel scared and wrote for encouragement, and any positive feedback.

Any guidance.

I now feel like an idiot for increasing my prednisone and feel stuck up again at 36mgs.

What a mess I feel.

Thank you for any positive reinforcement.

Kelly

At 2

[PMRpro Ambassador]

This is obviously not "just" PMR/GCA. They may be dismissing the thyroiditis - but it is a horrible illness while it is running. However - since you say your hormones are in a mess, there is a menopausal/hormonal cause of PMR symptoms. It is a complex picture and your current doctors aren't seeing it as such, they are only seeing their side of the cube.

Your endo is a bit hopeful but at least she says it isn't her field.- if it is PMR/GCA then the opinion "you need a biologic" isn't very helpful, there is only one that is approved for GCA, not PMR, and biologics are equally as problematic as pred for some people.

The truth of things is probably you have "Kellykel disorder" - your own personal autoimmune disease which has set up a perfect storm. Has the HRT made any difference? There are no cures for a/i, just symptom management and damping things down as much as possible. As to who can help best - probably a rheumy but it needs a "True Detective" as one of the Lupus forum ladies calls hers.

[kellykel in reply to PMRpro]

Thank you for another very helpful reply to my many posts.

Would you have advice for whether I could do a faster taper from 36mgs back to 26mgs even though I’m 3.5 weeks in? It’s been an arc: up a few grams to 36, then holding there, then trying back down.

Or do I need to start from 36 and begin a thoughtful descent as usual.

[kellykel in reply to kellykel]

Also, no one provided HRT as she said (endo) it would burn out and they don’t give anything for Silent Thyroiditis. I’m not sure it’s still that since it’s getting worse.

[PMRpro Ambassador in reply to kellykel]

Sorry - I read low as now!!! Obviously wishful thinking. But I would have thought it might be worth speaking to your GP and asking if you could try it. In my 30s I had menopausal symptoms and my gynaecologist put me on HRT, it made such a difference and I continued until one of the latest scares was one too many. Within a year I had developed PMR symptoms. Wish I'd stayed on the HRT!

Since you are struggling with reducing I would try 1mg at a time but maybe more often if you feel OK. That's what I have been doing recently and it has worked fine.

[kellykel in reply to PMRpro]

Ok, thank you so much.

[Christophene47 in reply to kellykel]

See my reply to PMR Pro.

[Christophene47 in reply to PMRpro]

Did you think HRT was a trigger? I know my trigger was viral. In the US , the pellet insertion of estadiol and testosterone are the best in my experience and opinion because the release simulates nature from an earlier age. Before any appt., one must get blood levels done in advance by 2 weeks;

Can't you go back on it? My gynecologist told me her oldest patient is 84, and second oldest is her own mother who is 82, and she herself is on it. Perhaps, it's not available in Europe in pellets inserted under the skin with local anesthesia; ??

It is nothing like the animal urine derived hormones used in the earlier days. The pellet system I believe was used in the 1950s, but when big pharma started pushing the estrogen pills, it fell out of popularity. I started when I was about 65, and won't give it up until I'm dead.

I am sure that notwithstanding my battles with PMR and prednisone, I would feel worse without it. Unfortunately, it is not covered by insurance for post-menopausal women, but $300 ×3 a year is worth going into debt for.

[PMRpro Ambassador in reply to Christophene47]

Not a trigger - but I do wonder if it was keeping things at bay!!