Update - endocrinologist app re - my post "rheumatology apps."

[Marlenec]

Now under new Rheumatologist and have appointment on Saturday to see endo as my synacthen test showed poor response last March.

Please can anyone tell me what I can expect?

Thank you

[SnazzyD]

Hello, I would have thought they would repeat it before any further action because a test result a year old doesn’t say much. If you haven’t had one yet it might worth making enquiries just in case there has been a mess up. However, they might just see how you feel before ordering a repeat, but that seems a bit inefficient to me.

[Marlenec in reply to SnazzyD]

Hi snazzy

Thank you for your reply. I did speak to the nurse about tests as I take 5mg pred and wanted to know if I should not take any for that day. But she said I may not have tests.???

[SnazzyD in reply to Marlenec]

Ah ok. My Endo wanted me to be below 5mg for a meaningful test because he said, the adrenals are still getting a bit too much Pred to open both eyes instead of just one. Presumably you were on higher than 5mg last March? If so, that may explain why it was so low because the adrenal axis would probably have been quite suppressed still. Perhaps they need to assess the situation on Sat to decide if another test at this point would be helpful.

[SheffieldJane]

I went to my first Endocrinologist appointment having not taken Pred. In case they wanted to do another Synacthen Test. He didn’t. He did however want me to stop Pred. (5mgs) because he felt that PMR was gone ( I wish I could be so sure). Instead he spent some time explaining that Hydrocortisone 25 mgs would be better for stimulating my Adrenal glands. It is weaker than Pred. You take it 3 times a day. It has a much shorter half life and therefore mimics what our own Adrenals do. Pred. Lasts for 12 hours, so in a sense you have constant Adrenaline. With HC there are periods when you don’t, just like nature intended. It won’t however, do much for lingering inflammation, pain and stiffness. Needless to say my Rheumatologist wants me to take Methotrexate to speed up the Prednisalone taper, well make it possible really. So they have conflicting opinion and priorities.I have a stay of execution because of Australia. I will have to decide before the end of April.

So in answer to your query, look listen, take notes, ask questions, balance it all with the knowledge you’ve gained here and from your Rheumatologist.

Let us know how you get on. My Endocrinologist says that there is a 95% chance that my Adrenal function will fully recover. X

[jinasc in reply to SheffieldJane]

Australia the home of Bowen Therapy. If you are going on a visit, I would do absolutely nothing and stick with pred all the way.. Make the decision when you return. It is only a steroid sparing agent and not a cure, as their is no known cure or cause at this point in time.

It comes with side effects, add them up, then add to pred side effects and think..............

[SheffieldJane in reply to jinasc]

That is sound advice that I will take. My GP seems to think Methotrexate is curative for PMR “ gets to the heart of it”. I think a lot of us would persevere with it were that a proven fact. Sigh!

[Marlenec in reply to SheffieldJane]

Do you still have PMR Jane and is pred not working for you?

[SheffieldJane in reply to Marlenec]

I think I do Marlenec, after 3 years, ,but my Endocrinologist thinks that my symptoms are due to steroid withdrawal that might go on for “8 months”. It doesn’t really matter where the pain

and stiffness come from though does it?. It makes me reluctant to increase my dose from 5.5 mgs. I suspect 7 mgs would feel better again. I have the fatigue and flu- like body aches.

[Marlenec in reply to SheffieldJane]

I'm amazed that steroid withdrawal could last like that. We never stop learning about Pmr!

My new rheumy believes my Pmr has gone too and my shoulder, arms and upper back pain is bursitis and I'm waiting for scan. I also have muscle weakness through Pred and I'm to see physio next month.

I felt so much better last week when I doubled my dose for 3 days for big toenail biopsies.

I've read your post about your decision after Oz it's a lot to think about, but better with your lovely supportive family.

It's our Leeds meeting today, so picture this - rain and sleet, very cold and windy and me in my sandals!

Take care.🌻

[SheffieldJane in reply to Marlenec]

I am hoping some miracle will happen in Australia ( eaten by a snake, knowing my luck of late).

The Endo was so precise as well, he said 8 months. I expect from his perspective, everything looks normal in the bloods etc. Never mind the poor bod shuffling around.

I hope you have a very good, stimulating, upbeat meeting! Tell us what you learn! The awful weather means that I am staying in with a clear conscience.

Do your poor toes have to be uncovered? I notice that they sell gel caps for sore big toes. I swear by Gabor shoes and sandals for comfort. My foot and nail Psoriasis tends to react badly to sun and sea. Imagine pink sausages with painted nails.

[Marlenec in reply to SheffieldJane]

I have to have it uncovered really to heal! but put plaster on to go outside. I have 3 pairs of new velcro sandals at the ready - just need weather to go with them!

Will update after app. Never mind the snakes watch out for spiders!

[PMRpro Ambassador in reply to Marlenec]

If it is bursitis - what is to say it isn't PMR causing the bursitis? If you have weak muscles - they won't help back pain. Don't think he is looking at the entire picture...

[Marlenec in reply to PMRpro]

I think you are right - not the whole picture. I'm waiting to see what the scan shows and hope the physio is gentle!

[jinasc]

A lovely relaxing repeat test, comfortable chair and warm.

Normally under 7.6mg and below............most prefer to wait till 5mg. As you know it is to see if your adrenal glands are waking from along sleep. Sometimes, length and ageing means they are not going to wake up and you will need meds for all the rest of your life. You have good new Rheumatologist who must be up to speed.

[Marlenec in reply to jinasc]

Thank you jinasc, I was on 4.5 last test (yes relaxing, but hate needles etc. And I had tea and biscuits as well!) but new rheumatist said to stay at 5. Yes feels like being listened to now, waiting for shoulder scan and also starting physio for muscle strength!

Take care.

[tangocharlie]

I was taken off Pred and put on a tapering dose of hydrocortisone for a few months until cortisol levels rose, measured by a pre 9am cortisol blood test. Did you see Dr Orme? he was lovely.

[Marlenec in reply to tangocharlie]

Hi tc

I am to see Dr Abbass on Saturday at St James - I googled him and read good comments. Hope to see you tomorrow!

Marlene