good news and bad all in 1 week

[pog165g]

The good news my Rhumy told me my GCA is in remission, My Endo told me my adrenal glands were shot so got to stay on steroids for rest of my life, Then my Neurologist diagnosed me with cluster headaches no cure just more bloody pills and injections and a great big oxygen bottle in the house just to cheer the wife up, talk about 1 step forward and 2 steps back.

[SheffieldJane]

Chin up! It could be worse and they might be wrong about the Adrenals and cluster headaches but right about the retreat of PMR.

[DorsetLady PMRGCAuk volunteer]

Not sure either Rheumy or Endo are correct.

Only way to know GCA is in remission [as we view it] is to get to zero Pred and no return of symptoms… although it may well be in clinical remission - I.e. the steroids are controlling it.

As for adrenals glands being shot - what is that based on? They may well just be stuttering at the moment- but that doesn’t mean they won’t get their act together eventually.

Sorry to hear about cluster headaches though….

[pog165g in reply to DorsetLady]

Thanks for reply i was down to2mg of pred had 4 synthac tests this year due to problems associated with low cortisol each time the results got worse instead of showing improvement

[PMRpro Ambassador]

Sounds like an attack of "crystal balls" on both fronts. And honestly? I'd take both with a pinch of salt and continue to VERY slowly taper if I could. You wouldn't be the first on this forum to discover the "experts" got it wrong.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

You wouldn't be the first on this forum to discover the "experts" got it wrong

Not by a long chalk…

[Merryfield]

Yikes. Only medicine to offset all this is humor.

[Songbird69]

I rather think I would get a second opinion.

They do get it wrong you know sometimes.

[agingfeminist]

just a quick note on the cluster headaches...my son has them...the oxygen works like magic (it does for almost everyone) but you need to take it for about 20 mins with the mask fitting your face well. BTW they can also go into remission!

And don't despair of your adrenals yet...a very very slow taper can help.

Good luck!

[Gimme]

Fingers crossed that they have it wrong!

[Jackoh]

Just carry on with your slow taper - you may prove them wrong! Xx

[Pixix]

My rheumy said I have Addisons Disease six months ago, & would never get off steroids. My doctor & I disagree. I’m waiting (six months so far) for an appointment in a different hospital with their rheumy!! I’ve also been diagnosed with 4 new diseases in 9 months, making a total of 11, or is it 12?! Despair not, go forwards, I’m doing a very very slow taper. Will prove him wrong, but not just yet!

[PMRpro Ambassador in reply to Pixix]

It's NOT Addisons - it is adrenal insufficiency secondary to chronic pred use. Grrrrr!

[Pixix in reply to PMRpro]

You & I both know that…but he wrote “Addisons” in the letter he wrote to my Doctor! I wasn’t copied on it, but we have complete access to our notes, letters etc! Merry Crimbo to you, S xx

[EdithWales]

Sorry to hear that pig

🥂

[Ruthie64]

Endo told me the same thing. She doesn't think my adrenals will recover after 7 years of being on them but I'm determined to prove her wrong. It'll be a long time before I'm even at a decent maintenance dose for my sai (currently at 8.5mg covering ulcerative colitis and osteoarthritis too) but I'll keep going for as long as it takes!

[Wizards]

Hi PogI was on prednisone for just shy of 8 yrs. My rhumitologist said I was a lifer and would be happy if I got 5o 5mg.

I never yoyo'd but I took it extremely slow. My only regret was I read some old study that said stay at 10mg for up to a yr to help adrenals kick in, I wish I had done that more between 4-2 mg when they were spitting and I was exhausted.

I got off but it nearly killed me but this New Year will be 1 yr.

As for other things I too have things crop up that prednisone was masking but that's life.

Like the rest have said, take it very very slow and like me you may prove them wrong.

Merry Christmas from Canada 🇨🇦

[PMRpro Ambassador in reply to Wizards]

The study that kept patients at 10mg for a year was not to help adrenals - it was to reduce flares. 10mg is plenty to suppress adrenal function.

[Wizards in reply to PMRpro]

I know that after, lol. Mind you I never had a flare but slow and steady. However I distinctly remember it stating for adrenals. Obviously very old.