Update on Dr Abbas (Endo) appointment

[Marlenec]

I had a second Synacthen test in March and got the results today. My adrenals have now kicked in. I thought so as I'm not fatigued anymore just the odd tired out day. My rheumatologist believes my PMR has gone but I'm not too sure as I still get some aching in shoulders and upper arms but not daily. I am on 5mg Pred so will start to taper to 4.5 tonight and do slow, slow method and see how it goes. If I don't flare hopefully I'll be off Pred in about 5 month's time. I'm not rushing, afterall Pred has been my friend for nearly 3 years!

I'll keep you updated. Thank you everyone for all your ongoing help. This forum is such a blessing!

Take care.

Marlene

[Dontwannabesick]

Onward and upward. Hope your success continues. Lots of good karma coming your way x

[Marlenec in reply to Dontwannabesick]

Thank you and back to you too!

[PMRpro Ambassador]

Well done adrenals! But I do wish I knew what makes any doctor think they can tell PMR had gone to sleep when the patient is stilla t 5mg pred!!!!

All the best

[PMRpro Ambassador]

As long as you aren't saying anything libelous!!

[Marlenec]

Thank you - yes I think he's relying on the bloods but time will tell.

[SheffieldJane]

Gosh Marlenc! We have kept pace in terms of the duration of PMR and the dose of Pred. I am one Synacthen Test behind you. I have agreed with the Rheumatologist that I will reduce from 5 mgs by alternating daily 4.5 and 5 mgs for 6 weeks. Then 4.5 and 4 mgs for 6 weeks then 4mgs and 3.5 for 6 weeks and so on. To give my Adrenals the best chance of recovery. No other drugs! Yay! Fingers crossed for both of us!

[Marlenec in reply to SheffieldJane]

Thank you Jane and your agreement sounds good - slowly, slowly catchy monkey! Yes fingers crossed indeed! Great that you can stick with Pred!

[Baileyw06 in reply to SheffieldJane]

Is the every other day better than the 5 week taper?

[SheffieldJane in reply to Baileyw06]

The point of this alternate day taper is to signal to the Adrenal glands to wake up. I guess it will feel worse than a straight taper because they won’t want to. For me ( diagnosed sluggish Adrenals) it is worth a try.

[Baileyw06 in reply to SheffieldJane]

I am going from 6 to 5 and 1/2 , too early to try? How do you know if you have sluggish adrenals? Thanks for your help.

[SheffieldJane in reply to Baileyw06]

I had a Synacthen Test, a very simple procedure that measures the glands ability to respond to a stimulating substance. ( blood tests without Pred being taken).

[Baileyw06 in reply to SheffieldJane]

I will ask the Doctor for it when I go in August. Thanks

[Pollyanna16 in reply to SheffieldJane]

Hi, I had got down to 2.5 but the adrenals had not kicked in. The rheumy has now referred me to an endocrinologist (as synacthen test only 200) meantime I am to take 5 mg Pred or 15mg hydrocortisone. However my GP reckons I should be on 30mg of HC - double the dose as I am still tired on 5 mg of Pred. I have stayed with the Pred for the last 3 days as I cannot decide what to do! So I am guessing you are not on methotrexate for the PSA? That seems to have been shelved at the mo.

[SheffieldJane in reply to Pollyanna16]

The alternative offered to me by the Endocrinologist was 25 mgs of Hydrocortisone, reducing in 5 mg drops ( quite rapidly). I want to try the Pred way first - I am very tired - like the bad old days.

[Pollyanna16 in reply to SheffieldJane]

That’s very interesting. Could you tell me what your adrenal score was after the synacthen test? Mine was 213. It was 61 at the outset! I am still on 5mg pred today, after a few holes of golf this morning fell into a deep sleep this afternoon 🙄

[SheffieldJane in reply to Pollyanna16]

I can’t find the letter. I think it was 282 and maybe 30 or 40 below the minimum they look for. I might be wrong. Why can’t I find the only letter with numbers?? Dr Debono said that I had a 95% chance of recovering full function - I remember those odds. I have got real sleeping sickness too, I love sleeping at the moment. I just get under my little blanket and I’m gone. As a full time working mother of three now grown up, maybe I’ve been tired forever?

Golf sounds like a lovely thing to do. Your arms and shoulders are ok with the swing then?

[SheffieldJane in reply to Pollyanna16]

Hydrocortisone has a shorter half life than Pred - more like our own Cortisol production, with periods of low Cortisol in between doses ( x 3daily). This encourages our own Adrenals to get going. I don’t think it does much for PMR/GCA symptoms though and has side effects of its own. This is why I am trying alternate 5 mgs of Pred and 4.5mgs every other day for 6 weeks the 4.5 for 6 weeks, then 4.5 and 4 mgs alternate days for 6 weeks and so on until zero - with a fair wind it might work. Here’s hoping!

[Pollyanna16 in reply to SheffieldJane]

Thank you Jane. So, I get the picture. If I stay on 5mg pred I will get more relief from PMR symptoms but unlikely to kick in the cortisol. I realise I am using it as a bit of a security blanket! If I swop back to hydrocortisone I will feel more tired & have to remember to take the pills 2/3 times a day. We are travelling up to Yorkshire next week & builders starting here the week after. Not great timing for rest or changing meds. I really think my PMR symptoms are very low scale now & aches & pains more due to Psoriatic and/or Osteoarthritis. Am desperate to see the endo, have to wait till 7/8 unless I can get a private appointment but no-one is answering my calls. I have noticed an improvement in my wellbeing since being back on 5 as was down to 2.5 then 15mg of hydrocortisone for about 4 months whilst the cortisol testing was going on. Thank you for your explanations & good luck!!

[SheffieldJane in reply to Pollyanna16]

I sincerely hope that reducing Pred at snail’s pace will kick in the Cortisol - that’s my aim. I have heard that it can take 12 months after finishing Pred for the Adrenal System to recover completely.

[Pollyanna16 in reply to SheffieldJane]

Ah yes, I see. I hope it works for you. The pharmacist who rang through my results pre. Synacthen test warned me mine might not kick in, ever. Because they figures were so low. I think you have a much better chance, Your consultant seems very confident, that’s good. I had come down very very slowly during the passed couple of years to 2.5 but been on pred since 2011. Here’s hoping we can both beat it!💪

[SheffieldJane in reply to Pollyanna16]

Oh I hope so too! I had no idea when I began. I would have taken anything for the pain and lack of mobility though.

[PMRCanada in reply to SheffieldJane]

So glad you’ve got a plan that’s best for you SheffieldJane! I know you were worried about the options presented that included new medication.

[Hidden]

Brilliant news and slow, slow sounds a good way to go 🌻

[Marlenec]

Thank you Poopadoop.🌺

[MhairiP]

Crickey - I'm amazed it took 3 months for you to get your synachten test results! But it's good the results were favourable. Good luck with the tapering - slowly, slowly!

[Marlenec]

My original app. Was cancelled because Dr Abbas was ill, they said they'd ring me with another but forgot! In the end I rang them. Yes v e r y S l o w l y.

[Blearyeyed]

Congratulations .

Slowly , slowly catchy monkey!

[Sho-Sho]

Can I ask when you had your first synachten test what dose of pred were you taking.

Very good news that your adrenals have now kicked in, mine haven't yet so experiencing huge fatigue.

[Thelmarina]

Lovely news!

[Marlenec]

Hi Shosho I was on 4.5 Prednisolone first time. This time I've been on 5. Dr. Abbas says 5 is fine.

Hope yours kick in soon

[Rugger]

Great news, Marlene. I hope your adrenals will soon be producing enough of their own to see you through your slow taper.

Keep in touch and take care.

[Marlenec in reply to Rugger]

Thank you, yes so do I!

[piggypink]

It's good to hear you are doing so well. Hope everything keeps going positively and you feel much better soon.

xx

[Marlenec]

Yes thank you.

[yogabonnie]

So happy for you. I am exactly there. 4.5 one day and 4 the next and will stick to it for a month s and then 4 straight then 3.5-4 then 3.5 then 3.5-3... etc. well, you know the drill. I have let go of my Jan 1 2020 end prednisone date... decided just not worth it to hurry it or plan it. I was sure my PMR was gone until I dropped from 5 to 4 and then I knew right away.... Hope this goes smoothly for you. Do we all NEED synacthen tests_???

[PMRpro Ambassador in reply to yogabonnie]

Some recent work in Leeds has suggested a lot more of us than it has been thought have problems getting adrenal function back to normal. It doesn't mean you won't, just it might take longer. If you feel OK then probably it isn't worth it until you get down to a really low dose - but one lady on the forum had one done at 2mg and it was established she had no cortisol production at all despite the fact she had felt OK. Anyone who has increasing fatigue below 5mg should have one done - just in case.

[Marlenec in reply to yogabonnie]

I certainly needed mine. But I'm not reducing as fast as you, I'll take 4.5 then 5mg for 5 days, 4.5 then 5mg for 4 days etc. this was working well for me until rheumy said to reduce faster and I had a very bad flare and my cortisol was too low. I dare not put a finish date - wouldn't temp fate.

Hope it goes well for you.

[yogabonnie in reply to Marlenec]

I should go slower than a month at each .5 drop I think now too. take it slow slow slow. I tend to want to go lower too soon. Good luck to us all!!!

[Marlenec in reply to yogabonnie]

Good that you are going to slow it down. Let us know how you do.

[Nurse-162]

Thats very good...I wasn't aware of this test and will look in to it.

Thanks

[Nurse-162]

Thats very good....I wasn't aware of this Synacthen test, but will look in to it.

Thanks

[PMRCanada]

So glad you’ve managed to this stage....where most of us are heading eventually from higher doses. Wishing you a slow, easy ride from here on in.

[Marlenec in reply to PMRCanada]

Thank you.

[Oumaof2]

A lovely positive story Marlenec... Well done ... Good luck with taper.... Keep us updated.... All the best... Lena🌻

[Marlenec in reply to Oumaof2]

Thank you Lena - so amazing to get all these good wishes from our forum! Yes will keep updating.

Best wishes to you.

Marlene