There is hope!

[Orpheus82]

So....results of my recent Synacthen test came back the next day and were entirely normal so adrenals are back in action. What was even more exciting was that CRP was 2.5 and ESR 10!!! OMG after 3.5yrs this is the first time they have come down and that was after I had had no pred for 5 days. However I didn’t feel brave enough to continue without so have gone back to 3mg and reducing to 2.5mg over next couple of weeks. I had felt less uncomfortable over the past 6-8 weeks and did wonder if the PMR was subsiding. I feel too nervous to celebrate yet and I know there’s a way to go to get to 0 but just to know that the blood results were normal has given me a big lift. I do hope you don’t mind me sharing this news with you and I hope it will help some people who are on their journey to know that things can improve. You just have to have patience......not one of my virtues! 😬

[Hidden]

Great News! And, still best to reduce slowly.....

[PMRpro Ambassador]

Excellent - adrenal function CAN return while on pred!

[SnazzyD]

Hooray! Still be slow and careful. Just a note - If you do feel a like you’ve hit a wall with energy at any time , don’t panic. The test does indeed show that they can function just fine when they squirt the stuff that mimics the pituitary’s hormonal shout. But sometimes the adrenals forget or can’t go into overdrive if there is an extraordinary bit of stress to deal with. Eventually they realise they need to be on call 24 hours a day and for some that happens more quickly than others.

[Hidden]

That is wonderful news. My doctor wants me to do the test but it is too soon I think. I just made it to 10 mgs prednisone.

I have not looked into test yet so will give it a look one of these days.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Your aren’t usually tested until you are below 7.5mg - which is approx to physiological amount our bodies normally produce. Some doctors aren’t interested until you are below 5mg - so don’t think there’s any rush.

Any reason why your doc has suggested it?

[Orpheus82 in reply to DorsetLady]

I agree I don’t think it’s worth having done until you’re on a lower dose. The endocrinologist didn’t want to do it until I was at 3mg.

[Hidden in reply to DorsetLady]

Neither one of my docs seem to know. Thank God I have finally landed in a nice community. All of my moves have resulted in new doctors and each one has their own opinions. Since 2015 I have had 6 different doctors not counting any referral docs. That is how many times I have moved. I can not afford to move ever again. There are no scary people living here. I feel comfortable and it feels safe and is quiet.

This time I shall settle in and keep to myself. I have one nice neighbor and don’t have a desire to go looking for more.

I do love that my eye physician knows all about tapering and GCA. He is now telling me my eyes are not only doing great but he can see absolutely nothing wrong. That in itself has taken great stress off of me.

Since I had those two test where I received 120 IV and 150 IV prednisone which I still had jaw pain he thinks there are other things going on and the prednisone is masking it. He feels my GCA is in remission and is leaning towards my Pmr is also.

It has been since 2015 so I sure would like it to be true. I do know if I flair it has always been trying to get off 10. I am going to stay at 10 for the time being and will see if my labs go down.

I really am weary of all of this. I finally have my art table set up comfortable and I want to simply play and see if I remember how to do it.

🤪

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Oh I’m sure you will remember. 😊

[Marilyn1959]

Fabulous news!

[PMRCanada]

So thrilled for you!! Your post brightened my day. Hope it continues.

[SheffieldJane]

Fingers crossed for you. Even though the Synacthen test results are normal (yay!) it just means that they are capable of working. You may feel a bit tired etc for a while yet. It all sounds hopeful though.

[jinasc]

Good news, but remember to carry your Blue Steriod card for at least one year after your final dose.

[Rosina1871]

I am feeling good too and yes there is hope. I was diagnosed January 2019 but symptoms had started one month before. So far I have been extremely fortunate and not had any flares. I am on 1mg a day which I intend to stay on for another month and then will go to 0.5mg. I know I could have a relapse but at present I feel good. I’m sure my adrenals are up and running and latest blood test was normal. I’m aware that many of you have had, and are having, a rough time. Just wanted to share, especially for the newbies, that things can get better. Fingers crossed

[Margaret1951]

I am very pleased for you, may you continue to be well x

[bunnymom]

Hurrah🎉🎈🎉!

[Jackoh]

So pleased for you ! Xx

[Gurufjm]

Brilliant news .. hope things continue to go well, keep us posted.

[confused2]

For happy for you. It does give me h ope.

[pugrescue]

lots of wonderful news here this morning. Gives us all a lift. Congtatulations!