10 Years...journey over?

[PMR2011]

10 years PMR and GCA. Was on Actemra tapered to every 3 week injections. Well my Creatinine took a bump up and though rare, the only reason anyone could figure it happened was the Actemra. So, last dose was Sept 10th. Creat came down, and I feel good. So...after a 10 year journey, no meds, no symptoms. Not sure I completely trust it yet...but yay! When I asked rheumie what the chance of relapse might be he said “haven’t a clue. You’ve never followed the curve or presented like it says in the book so we just don’t know”. I have to admit that acknowledgment was rather satisfying. I will continue to peruse the website and share thoughts here and there. Want you all to know you have been an absolute lifeline during this journey. I will forever be grateful for the sharing of info, emotions, questions, and of course humor!

[yogabonnie]

WONDERFUL!!!!!! so happy for you.

[Kendrew]

🍾💐🥳🍾💐🥳🍾

[DorsetLady PMRGCAuk volunteer]

Good news….I’ve been in remission from GCA for over 5 years now…also September….…not totally pain free, but from osteoarthritis not GCA…and whisper it quietly, OA is behaving itself at the moment!

You may get a few niggles once life returns to normal (10 years takes its toll on the body ) ….so don’t assume everything is related GCA or PMR…..

Enjoy your new phase in life..😊

[PMR2011 in reply to DorsetLady]

For sure, the thumbs that don’t work and get sore (osteoarthritis). Or the bum knee that gives out every now and then. Definitely need to do some rebuilding and strengthening. You are right tho, the question hangs there...has it come back?...with any little ache or off day. Does that fade after time?

[DorsetLady PMRGCAuk volunteer in reply to PMR2011]

Yes it does, the longer you go on without a return, the more confident you get, not blasé because there is always a possibility…which is why we say ‘in remission, rather than gone’ ….and you can can differentiate between OA and PMR/GCA pains.

I found/find Pilate very good in rebuilding strength in whole body (have had 3 joints replaced since GCA remission) - and there are plenty of exercises online for specific OA joint issues…

Look up Bob & Brad on YouTube- they do waffle on a bit at beginning of session but both experienced older physios who have personal experience of OA - always a bonus I find when therapist actually know what their patients are experiencing.

[Sharitone]

👏👏👏

[PMRpro Ambassador]

In the nicest possible way - I hope we never need to see you here again!!!

[123-go]

So good to read your uplifting post! My very best wishes to you. 😊

[PMR2011]

Hi Dad2cue, revisiting the math. Started Actemra weekly 7 years into Pred. It took 1 yr plus to taper off Pred completely. Was on 20mg at the time. During Pred tapering I did have some Pred withdrawal symptoms. When I got symptoms I’d slow the taper more. Two years on weekly Actemra then began to taper by first going to every other week, then more recently every third. So total of 3 years on Actemra. Yes, if symptoms recur I will start right back on Actemra with very close kidney monitoring. As a matter of fact, Rheumie said, hold onto the 2 doses I have in the fridge just in case. They’re good til 2023. If I stay symptom free he said they’d try to figure a way to have someone use the doses. He also seemed to think the shortage will resolve soon (am in the States).

[SheffieldJane]

Really happy for you! Say hello to the world for me!

[Mstiles]

Congratulations to you! I admire your strength and persistence on this long journey. Hope you can relax and enjoy life now. I started with PMR/GCA 3 years ago with 40 mg of pred and am right now still at 10mg, after flares, etc. and pretty discouraged about my progress. I’ve never managed to get below 10 mg.

I’m wondering if you were stable and not having any other health issues when you started tapering with the Actemra. The last year especially has really been rough on my body, I need cataract surgery, have balance issues, neuropathy, gut issues, seems like every body part needs fixing. Is it advised to be in pretty good shape before starting actemra? I don’t have a knowledgeable rheumatologist or GP. I depend on my GP for pred.

[PMR2011]

Sounds like the Actemra helped. Fingers crossed your PMR is in remission too!

[PMR2011]

Hi Mstiles, the Pred had definitely affected me as with weaker muscles, less balance, foggy brain and eyes. Once I got on the Actemra and below 7 mg on the Pred things got a whole lot better, even though I went very slowly on tapering the last bit. Actemra does not work for everyone. It’s a very individual choice, but I will say I’m very glad I took the chance on it!

[lascala32]

Couldn’t be happier for you. Enjoy every moment.

[Sho-Sho]

What a joy for you after such a long haul - I have also experienced such great support from this wonderful organisation.Good luck.

[whitefishbay]

Hurrah! Early Christmas present (or overdue one).

[Lonsdalelass]

Super news! Well done you PMR2011!! 🤣

[Herman99]

Amazing gives the rest of us hope ....

[Telian]

Congratulations! 🍾🥂🍾🥂

[Jackoh]

Great news👏👏👏👍x

[PMRCanada]

So happy for you! You have been on such a long journey, you deserve a break for sure. Long may it last!

[Skysey]

So pleased for you. Enjoy life without these conditions. Such wonderful news.

[jarn]

Hi There and such good news even if a long 10 years. Am curious to know if you had stopped Prednisone while on Actemera? I started Actemra a year ago (weekly) and my rheumy had me stop the Pred after a gradual taper, even though I still have neck/shoulder discomfort. Diagnosed PMR/GCA in Dec 2019.

[PMR2011 in reply to jarn]

Hi Jarn, yes, I tapered the prednisone over the course of a year, however did not have significant symptoms.

[jarn in reply to PMR2011]

Appreciate you responding; I am currently down to bi-weekly Actemera. Just wondering my rheumy doesn't want me taking the Pred currently even while I have some PMR pain in shoulders.

[PMR2011 in reply to jarn]

I’m surprised as many folks do need continued low dose Pred even while on Actemra which only acts on one mechanism of inflammation when there can be more than one involved.

[humlies]

I am so happy for you and hope that the longer you go without symptoms the more confident you will become that the PMR is really over. Of the 7 people in our small village who have/have had PMR (!) 3 seem to have recovered completely with no symptoms recurring after about 3 years.

[Bcol]

Brilliant news.