Clean bill of health

[HeronNS]

After a bunch of blood tests to get a baseline because of my great age, saw my doctor this morning. Everything is "great" and even CRP is normal, first time under two figures since this journey began (7.7). So she says to keep on tapering as I can, and come back in a year!

I asked about myofascial pain but she gave no suggestions about what to do, so will discuss with magic physiotherapist as this may be reason why shoulder therapies not as effective as expected.

Is this good news? I'd like to think so, but I think I'll miss the quarterly check-ins, creature of habit that I am. Sure I can find more fun things to do.

She was also a bit cross that I hadn't got the Shingrix vaccine. She gave a prescription to hubby, and one for me, when he visited her last week, but he didn't think to tell her I'd never had chicken pox. She seemed quite insistent that "everyone" has had chicken pox, but I'm pretty sure I haven't, and led a relatively sheltered childhood when it came to exposure to childhood diseases. Also, after seeing the major reaction hubby had, I've no intention of subjecting myself to same, especially as we don't know if I am truly immune. Hubby missed a shift at work and lay around all day feeling sorry for himself. Major red patch on his arm, too. Back to normal, such as it is, today.

[DorsetLady PMRGCAuk volunteer]

Hi,

Good to hear. Sure you can find something much more exciting to do with your appointment free time!

As for the vaccine, it’s up to you. I refused earlier this year, got a funny look from the GP, but nothing more said. I did mutter something along the lines of......might think about it next year. And I MIGHT, but I’ll undoubtedly come to the same conclusion!

[PMRpro Ambassador]

Ditto to DL's comments.

And REALLY - some people DIDN'T have CP as children - my brother didn't, he got it at well over 30, and my MIL didn't get it either.

[SheffieldJane]

I haven’t had Chicken Pox. I know I haven’t because I wanted them, the dramatic pustules and time off school, Lucozade and maybe a Noddy Book. Weird child. Yet I carry immunity. Go figure?

It sounds as if you are doing very well Heron. Lighting the way. 🦋

[HeronNS in reply to SheffieldJane]

It's interesting that I have such brilliant results because in fact I don't feel all that well. 🙄Really quite worried how I'll cope with the trip which is coming up in about three weeks.

[Hidden in reply to HeronNS]

Maybe you don't feel well because you are worrying about the trip?

[PMRpro Ambassador in reply to SheffieldJane]

You MUST have had it to develop the antibodies - albeit so mildly it didn't get you off school as CP. It is possble to have it with no apparent blisters too.

[SheffieldJane in reply to PMRpro]

I want my Noddy Book! 😫

[HeronNS in reply to SheffieldJane]

I have them all, although the later ones were bought when my children were young so they'd been made more politically correct.

[SnazzyD in reply to SheffieldJane]

You can get it and be asymptomatic or near enough such that nobody suspects it.

[HeronNS in reply to SnazzyD]

That's why they need to test people like Sheffieldjane and me to make sure we really are immune before administering shingles vaccinations!

[SheffieldJane]

Well symptoms rule with this disease. I hope you are pleasantly surprised and your trip is just perfect.

[May10]

Good for you. Hope you continue on the right road. May

[Hidden]

Dear HeronNS, I'm happy to hear that you got a "clean bill of health," but can understand how being told to "come back in a year," would equate to some anxiety. I think I'd feel a bit abandoned.... which (I believe) would be normal.

I'm just coming back from a week long trip and I feel like CRAP! The disruption of routine, change in eating habits, stress of travelling, eating stuff I should not have, etc, etc, etc. Perhaps all of that is playing on your subconscious mind. Breath. Relax. Plan. ...and try not to worry. xxx

[HeronNS in reply to Hidden]

She's been pretty good with my PMR treatment. I felt a bit abandoned last year when she told me to use up my tablets and stop and see what happens. I hoped she was right, I felt well and hoped I was really in remission. Evidently I was not and for the last nine or ten months or so I've been recovering from a flare triggered by attempting to reduce too quickly so I could be at zero by the time the tablets ran out. She learned her lesson, too, and I now have a very generous prescription. And I know if I need to go back I can. She also told me to carry on tapering as I have been doing, no nonsense about letting pills run out and see what happens! So I don't feel abandoned right now. It's more like being handed the keys to the family car as a new driver and told I can now go out by myself!

[Hidden in reply to HeronNS]

Well.... Buckle up Baby and enjoy the ride!!!!!

[HeronNS in reply to Hidden]

I will. Thank you!

[Megams]

~Well done Heron - our journey has been of similar length in time albeit a month or 2 apart and thrilled to read your CRP finally normal. How totally satisfying to have such wonderful news - well done as I know you have been a stickler for doing all the nght things along the way

Can one safely assume you are now in remission?

Abundant blessings and go well on your new journey ~

[HeronNS in reply to Megams]

I don't think I'm in remission. I'm still at 2.5 mg pred and as we all know that can mean a lot.

[Megams in reply to HeronNS]

~How does one know when one has reached remission after 3.5 years?

I'm 3mg equivalent (15mg hydrocortisone) & whilst feel excellent, have multiple tendon + ligament issues + osteoarthritis almost everywhere (new) so not sure where I am PMR wise.

Staying put current level of meds as can't drop any further without feeling terrible. I'm sure it's the arthritic component now at play.

[HeronNS in reply to Megams]

Megams, I can relate. I, too, think most of my current discomfort/pain is due to other things. I've decided to take seriously the possibility of myofascial pain syndrome and see if treating that will help me. But I do still from time to time have that unpleasant heavy sort of pain in the upper thighs which has plagued me from the very beginning. Until that's permanently gone I'm still in PMR territory, with these other causes of pain also in the picture. The only way we know if we are finished with PMR is when we've achieved zero pred and been okay for some weeks. Let's hope that we are both soon able to make another step down.

[Nap1]

Congratulations are in order here. Remission is a wonderful thing.

[HeronNS in reply to Nap1]

I suppose. I don't know if this is remission. Won't know until pred is in my past. Still at 2.5.

[Nap1]

How long for you and what dose. You are not having adrenal issues that’s great

[HeronNS in reply to Nap1]

I was as low as 1.5 last year, around July I think. It was attempting to go to 1 which triggered the flare. Highest I eventually had to go, only for a week, was 7 mg, but it's taken all this time to get back to 2.5. I suffer a lot from fatigue, although not so much the "deathly fatigue" any more. Sometimes I feel quite normal! The "clean bill of health" is what my doctor gave me, not what my body tells me. I am, however, really pleased by the CRP reading.

[sondya]

You must be feeling great! I know I am. Told many months ago that GCA was over and all that was left was the slow process of tapering - reducing 1mg per month. Now I'm on 1mg daily. Doctor and Reumy are thrilled that their plans were spot on.

Congratulations!

[Sandy1947 in reply to sondya]

Congrats? Love 💕 happy endings! I see1 mg as The End! Had a date with a Dr. who said 9mg was no big deal! I felt great. Too bad I think I have diminished mental capacity which could be the aging process. Still blaming Pred and hoping I’ll become Einstein when I’m off the drug!

[Sandy1947]

Great news! Enjoy the trip. Hope it’s someplace warm and relaxing!

[HeronNS in reply to Sandy1947]

An art tour of the Netherlands. Not so relaxing!

[Sandy1947]

Enjoy!