Does PMR / GCA ever completely go away

[Darcy2000]

I would love to hear from the PMR/ GCA people who got down to O Pred and felt normal once again and had no re occurrence for an extended period or forever

[PMRpro Ambassador]

There really aren't that many here on the forum - they are away getting on with normal life! One, SkinnyJonny, was in a wheelchair with PMR but climbed AnnaPurna IV at the end of 2019.

I belong to a group on another forum where the "still on pred PMRers" are the minority though with more than half of them having been off pred for some years. Two of them have had PMR twice but it must be at least 5 or 6 years since they stopped pred. I know of a lot of people who have got through PMR and have been off pred for several years with no recurrence.

And of course there are former GCA-ers here - jinasc and DorsetLady are definitely off pred, and I'm sure there are others.

[Darcy2000 in reply to PMRpro]

Thanks for that informative post

[Sally001 in reply to PMRpro]

Thank you PMRpro, this is reassuring. Hopefully one day I'll be off pred...I can't wait.

[Arflane97G]

Not really an extended period but stopped taking pred early December 2020 and am feeling ok! Have appt with my lovely rheumatologist in April and then a further one 6 months after and then hope to be discharged 🙂.

[Lonsdalelass in reply to Arflane97G]

Wonderful news!!

[SnazzyD]

Hi,Don’t know if I count but I’ve been off Pred since August last year and for four months before that I was fiddling about with crumbs of Pred. I was on less than 1mg for a year. Six months on, I feel Pred free in a way I can’t describe but I’m not back to what I was and nor do I expect to be. After nearly 4 years from GCA diagnosis I see it rather like restoring an old painting where you carefully remove the crust to reveal the lovely old colours underneath that will probably not be the same as they were when they left the artist’s brush. No I don’t feel normal as in the same pre-diagnosis but expect to find the new highest point for me in the next year or so. After cancer it took 5 years so I’m open minded. As for the GCA and cancer for that matter, I see remission like peacetime for now that relies to a great extent on a coalition rule between my body and head. No more can my head go off on some crusade without consulting my body first.

Perhaps a bunch of metaphors isn’t what you were after 🙂

[Darcy2000 in reply to SnazzyD]

I really enjoyed your metaphors ..gives me lots of hope ... thanks very much

[Arflane97G in reply to SnazzyD]

Was talking to my physio just before Xmas and he asked me how I felt & I said well, better but not how I felt before onset of pmr and he replied - well, you are a year and a half older!

[Mcdurmott in reply to SnazzyD]

Hi SnazzyD—Wonderful metaphors that aptly describe the experience of recovery. So glad you got across the finish line even though life is different than it once was. Loved your comment about having to consult your body first before departing on a crusade. Thank you!

[Highlandtiger in reply to SnazzyD]

Your metaphors are excellent! 👍

[Greensleeves in reply to SnazzyD]

Wonderful metaphors Snazzy . Xx

[kmeikle1 in reply to SnazzyD]

Your metaphor about the old painting resonated with me. Your words gave me hope, but also reminded me to watch my expectations. I can look forward to remission at some point, but I may not be good as new. Thank you SnazzyD

[Mikb]

In 2 weeks it will be my one year anniversary of being off pred for GCA and PMR! I am feeling as normal as one can feel during this very strange time.

[SnazzyD]

It’s a question of degree though. I nearly decked a physio who said to me when I presented with acute tendinopathy saying I couldn’t wear walking boots anymore and walk in the house without pain at 56. That’s quite some ageing in 18m. I do think though that as these people get older they would be horrified if someone thought their deterioration was to be expected and accepted. I think this low bar for ageing causes many to put up with things that could be rectified or improved if someone had put their foot down and tried to achieve the best potential for them.

[PMRpro Ambassador in reply to SnazzyD]

I wonder if their age has anything to do with it? I don't think attitudes have really changed since my mum was the age I am now. But there the resemblance ends - even if I'm not as fit as I should be after lockdown ...

[Sally001 in reply to PMRpro]

Is PMR and GCA genetic?

[Frewen1 in reply to Sally001]

The experts here will correct me if I’m wrong, but I believe there is a genetic component. My father had PMR, I have GCA.

[PMRpro Ambassador in reply to Frewen1]

In the sense that having certain genes increases the likelihood you might develop PMR/GCA but that is only one of a whole load of other factors. It isn't genetic in the hereditary sense other than your family has a similar genetic history.

[Frewen1 in reply to PMRpro]

Understood. Would you link to other illnesses, too? I also had sudden onset, urgent sepsis 5 years ago, completely unexplained, I only lived to contract GCA because a gp thought ( wrongly ) that I must have appendicitis and rushed me to hospital. Mysterious world!

[PMRpro Ambassador in reply to Frewen1]

Did the GCA develop (you don't catch it) soon after the sepsis? That is certainly a major stress on the immune system that would have contributed to it going haywire and causing an autoimmune disorder. I think most medical people have become far more aware of the signs of sepsis in the last few years. Just as well.

[Frewen1 in reply to PMRpro]

Five years almost exactly? And yes, I was lucky... (by using "contract", I didn't mean to say "caught", "develop" might be a better word, but the onset was only a week...)

[PMRpro Ambassador in reply to Frewen1]

Then I doubt it was the direct trigger - but probably part of the history

[Anna135 in reply to SnazzyD]

It definitely doesn't have to be due to ageing at all,and I would also resent such assumptions and expectations. I'm 38 and have spent the last 6+ years sick with GCA, and now PMR and secondary adrenal insufficiency. The SAI has particularly affected me badly.

My mum on the other hand, is 71, extremely fit, great health, mind sharp, and is the one who has to help me because I'm so poorly and she's so fit and well.

I hope I can be as well as her, eventually!

[JulieR2]

Well after 4 years I have been pred free since September. I have had all manner of aches and pains. I consider side effects. Not PMR though! I had been to my GP because of my stiffness which got worse through the day and the fact that I was constantly in pain. My GP has referred me to the rheumatologist in case I have a deferential diagnoses. Anyway long story short I bought a new neck pillow as I was getting pain in my neck and shoulders! As if by miracle my appointment came through today and my pain has improved! So hoping my improvement is linked to improved sleeping posture and PMR and any other possibilities are not the problem! So 55 and 4 years in I have just over a year until I plan to retire. Hoping I will be totally well by then! I have also lost over 3 stone in weight in the last year which I am hoping will have helped too! So weight can come off too which I know is a worry for some of us on top of every thing else😀

[Lonsdalelass in reply to JulieR2]

Hi Julie, nice to hear from you. Didn't you once get off the pred before and have to go back on a low dose, or am I confusing you with someone else? Either way, pleased you're off now and fingers crossed you've sorted your stiffness and pains out yourself this time round with the neck pillow! Great news about the weight too! X

[JulieR2 in reply to Lonsdalelass]

I did have to go back on you are correct. I am never sure I will ever be pain free again to be honest but it’s not PMR. So let’s see what the rheumatologist has to say. Will keep you posted😀

[Lonsdalelass in reply to JulieR2]

You've done well to come off it again, quite soon too. Great! Xx

[arvine in reply to JulieR2]

Hi JulieR2, I,ve had various pains over last couple mos, have reduced to 4 mg pred, from 40 mg over 4 yrs ago, diagnosed with PMR, am having RA bloodwork done, but shoulders are bad again along with other joints, so was wondering, what kind of pillow did you buy and find helpful with shoulders, Im a side sleeper

[JulieR2 in reply to arvine]

Hi there I bought a power of nature memory from one from Amazon think it works for all sleepers. Good luck😀

[arvine in reply to JulieR2]

Thank you

[Rache]

Snazzy you’re a poet

[teesher]

Hi Darcy, I had pmr for four years before it burned itself out. I came off steroids a year ago. So yes, it does go at some point but we are all different as you know. There is light at the end of the tunnel and there are plenty of us who came out the other end. This forum was a lifeline for me. x

[jimcarlow75]

Hi, yes I got down to zero pred. It felt like quite an achievment after eight years. I don't know how much sooner I could have stopped pred because it's quite a step to stop altogether.But, 11 years on and in 2019 pmr was back. New straight away what it was

and I'm back on the treadmill..

[Telian in reply to jimcarlow75]

Sorry to hear that Jim.

[Ladyoak]

Oh Darcy2000, I am glad you asked this as I am only beginning my journey, the lowest I got down to was 5mg but that is only since June 2020 so came down fast from 30 mg. I do know someone who is 80 who got through it within 18 months and now on zero, so at 55 that gives me hope. This forum is so great.

[Domstad]

I have been off pred for over 12 years and never had to go back. Now I have other health problems (age 83). I have had permanent headache for over a year and also polyneuropathy that reduces my walking ability. I also sometimes have pain in a foot. What makes me a bit glad is that I will get my second injection with covid-19 vaccine from Pfizer/Biontech on Wednesday next week. I am in Sweden.

[Telian in reply to Domstad]

At least you’re seeing a positive through negatives Domstad! Out of interest how long will it have been between your vaccinations?

[Domstad in reply to Telian]

I have had the first injection on January 20 from Pfizer/Biontech and will have the second next week. It feels great to be able to almost go back to a normal lite, but it is hard to know what it will be like.

[Telian in reply to Domstad]

Much quicker than me - here in the UK it’s currently 12 weeks.

You’re right how good will that be - whatever normal might be it’s good to know we’ll eventually be able to relax.

[Domstad in reply to Telian]

We understand that we will have to wait 1-2weeks after the second injection to be safe

[Gellybabie]

I second that ! Have been desperate to ask the same 🤔 I haven’t read the replies yet ! Fingers crossed 🤞 for positive feedback 😉😊

[Healthysearch]

Hi, I was on prednisone for about 1 1/2 years.

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[Joan-E-D]

I had PMR for 3years but it went into remission in November 2019 and I was able to stop taking Pred. So far so good. I'm able to walk up hill at a reasonable pace without feeling pains in my legs and my energy has come back much of the time, but I realise that there is a difference between being 72 and 77 years old. I'm just grateful to be as active as I am now.