Does PMR ever go away???

[Purplecrow]

This post was triggered by another post, but posted on its own to bring it to the forum for discussion.

Since my PMR diagnosis in 2013, the party line seems to be evolving...eg, originally I was told the disease lasts 1-2 year. Now the time line has slipped to nearly 6 years for remission, and we have seen other changes...the onset age has slipped from 70 to younger...even into 50's(?), more and more males being diagnosed, longterm consequences of pred use are discovered to be less dire, ...and the list is growing.

My question is this... is PMR an Autoimmune disease like fibromyalgia and RA, and others, which never end?

As research continues, answers will surface. I keep hoping to see an end to this miserable disorder, but today I lack optimism.

Hello all the experts, will you weigh in on this topic...??!!

Thank you, jerri

[Dovelady]

Good question. I’d like to know too. I too was diagnosed in 2013 with the expectation it would be gone in 18 months to 2 years. I too lack optimism any more, how many times have I said , by Christmas I’ll be down to 2 mg. Back up again to 7 and not very happy. If it wasn’t for this group I would be lost, at least I know I’m not alone , so thanks Jerri for posting this on a stand alone post.

[Suet3942 in reply to Dovelady]

You are mirroring my journey Dove lady. Same year. Same problems. 😟😟

[Dovelady in reply to Suet3942]

We ought to start a club, The unlucky 13ers!

[Suet3942 in reply to Dovelady]

Yes definitely. 😣

[Purplecrow in reply to Dovelady]

Count me in!!🤪

[Constance13 in reply to Dovelady]

It would have to be added with "the unlucky 12ers, 10ers, etc etc.😏

[Longtimer]

Yes I do know that Polymyalgia is an AI disease, but fibromyalgia isn't....

I do agree it's a miserable disease, I 'm 7 years down the line....and still struggling to get below 8mg........but we plod on, and hope things ease, and it burns itself out!!......

[Purplecrow]

Yep, all you say...and If I am incorrect on any detail, I cheerfully accept correction. This is not a who's right and who's wrong discussion, but merely a dialogue without (as yet) discernible conclusion.

Thanks for the additional info, Jerri

[fmkkm]

Regarding your comment about more males and younger age at onset. I have thought from the beginning that when more males at younger ages start getting this disease it will get more attention and research. Sounds cruel but it is true. I have GCA which is shown on information sites as a disease of elderly women. When 40 year olds loose their eyesight it becomes a game changer.

Best/fm

[Hidden]

I think there’s probably a few of us thinking exactly that same thought!

I’ve been down to 5mg with the help of Methotrexate but currently back up at 10mg (+2.5mg extra for 2weeks) after MXT stopped for Liver Issues.

It’s 7&half years since l first started with with PMR & often wonder when it will end?......

[Hidden in reply to Hidden]

Well done for living through 7 &1/2 years. I often wonder what would happen if I was taken off dmard for similar liver issues. Checked every 3 months. For me it not the drugs that bother me. It the stress I get when they try and get me down to lower doses or as last one said "rationalise" my meds. For me this has lasted longer because twice in the first year they tried to reduce me too fast . No joy and so back up and markers raising and dropping like mad. I am sure that if I had seen the forum before I started taper I would have gone ultra ultra ultra slow. Sorry have lost me thread but I think if we stayed at 15mg until the markers were down, then 14 until it goes down an stay at each level we feel good at then it might be cured quicker. GCA different cos of high doses. Sorry msleeping pills kick in. Thus may be deleted by morning .night everyone👀

[PMRpro Ambassador in reply to Hidden]

No cure - but the waiting room would be more comfortable!

[Hidden in reply to PMRpro]

Where's ambassador titles gone?

[Hidden in reply to Hidden]

Moderators now 😉

[Oxford8 in reply to Hidden]

Delighted you are now a Moderator. 👍👏👏🙂

[Hidden in reply to Oxford8]

Thank You Oxford! Hopefully all goes well & we don’t have much to actually ‘Moderate’

Hope you are doing well? x

[prunus in reply to Hidden]

Who'se great idea was that you should suddenly become "Moderators" without it being explained to the rest of us? What is the thinking behind it?

[Hidden in reply to prunus]

Good Morning Prunus

I am attaching a Post from Liora regarding New Moderators after Kate stepped down, both these Posts are Pinned & you can view them easily.

Kind Regards

MrsN

[Hidden in reply to Hidden]

Moderating the forum - update

From

LioraAdministrator

Dear all,

You may be aware that the moderator for our forum Kate Gilbert is stepping down after 8 years! We are currently in the process of recruiting new moderators and reviewing our guidelines to ensure the forum meets all your needs in the future and continues to be a place for information, support and sharing. We would like to thank Kate for her tremendous contribution to the forum and ask you all to kindly bear with us during this period of change. We really appreciate all your support as we work towards this and we look forward to updating you soon!

On behalf of the staff & trustees, PMRGCAuk.

Like (31)

More

[Hidden in reply to Hidden]

New Moderators - coming soon

From

LioraAdministrator•

Hello all,

We have had a number of generous volunteers who have come forward to help moderate the forum. We are delighted to have a team and we will be working with them and Health Unlocked to introduce them to the role over the next few weeks. In the meantime you may have noticed them with an Ambassador badge - which is a stepping stone to the role of Moderator. Our Ambassadors-soon-to-be-moderators are Dovelady, EdithWales, MrsNails, PMRpro and Yellowbluebell. I will keep you posted as things move forward. Best wishes

[prunus in reply to Hidden]

Many thanks for that. I'm now up to date.

[Hidden in reply to prunus]

We had our final training yesterday with HU & our Badges were changed, we’ve been very busy in the background for weeks.

Any questions at any time please ask any of us by PM or as a Post.

Kind Regards

MrsN

[PMRpro Ambassador in reply to prunus]

It was explained a while ago that ambassador was a first step to moderator. Volunteers were asked for some time ago - and have been approved by both PMRGCAuk and HealthUnlocked and given HU training. Most of the forums do have volunteer moderators in place anyway - it was Kate before, she has retired after 8 years.

[prunus in reply to PMRpro]

Thanks for that. Somehow must have forgotten - only excuse my age.

[stellafmdm in reply to prunus]

Pred Head?

[Constance13 in reply to Hidden]

Can't that be added to the name?

[PMRpro Ambassador in reply to Hidden]

We passed our driving tests ...

[Hidden in reply to PMRpro]

😂😂😂

[Oxford8 in reply to PMRpro]

Delighted you are now a Moderator. 👍👏👏

[Hidden in reply to PMRpro]

Had read new house rules but missed that announcement. Might have been to fore when I was on my recent sojourn.

[Hidden in reply to Hidden]

Catch up tomorrow x

[Christophene47 in reply to Hidden]

Hi MrsNails, In the 7.5 years, have you ever experienced times when you feel well?

[Hidden in reply to Christophene47]

Good Question! At first after the initial dose of Pred l was like my old self again & remained that way until l got to 11mg trying to get to 10mg which became a battle, that caused me to retire early.

I then ran into a couple of flares which had me up at higher doses which caused a set of issues of their own.....

Ultimately, l started Methotrexate to help me reduce my Pred & that was when l was probably about my best; however not one to do things easily l developed Breast Cancer, so Surgery, Chemo & the long term side effects from that were significant.

I then started the Methotrexate again as l’d been as low as 5mg but PMR was rearing its head again. I remained on the MXT until last August when it was stopped because of Liver Issues

Since December, l really haven’t been well, lots of old PMR signs n symptoms reoccurring & a gradual increase back to 10mg which is currently being increased to 12.5mg for two weeks, as per GP to see if we can get the inflammation back under control.

It’s been a tough old journey & l just hope one day things will improve.

Don’t be disheartened, l’ve still travelled & managed to move house!

I have to exist in ‘MrsNails’ World ie l set the pace & if l’m in charge everything pretty much goes to plan but lm certainly not the person l once was. But Breast Cancer focuses the mind & I’m still Me more or less 😉

Hope that’s not too depressing a reply.

How long have you had PMR?

MrsN

[Hidden in reply to Hidden]

A rollercoaster ride that must have been a nightmare 🌻🌻

I think the Mrs nails world idea is the bees knees. I still allow people and myself to "push me" past my limits. Family weekend last week equals bed rest for much of the week I return. Luckily I can do that 4 times a year.

[Suet3942 in reply to Hidden]

I think you're wonderful. Very helpful despite all your probs. Thank you. X

[Hidden in reply to Suet3942]

Thanks Sue 💐

[Christophene47 in reply to Hidden]

Thank you for your reply and insights. Do you ever experience depression?

[Hidden in reply to Christophene47]

Hi Christophene

Wasn’t sure if this was for me or not; l seemly breezed through the Surgery & Chemo but was warned by my Oncologist it would catch up on me & it surely did, although l wasn’t really aware, l just became insidiously lower & less interested until one day l realised l just couldn’t remember when l last laughed! I spoke to my GP who was new to me & she picked up on it very quickly! I agreed to an antidepressant basically because my Oncologist felt it would be in my best interests & truthfully it really did the trick!.....

[Constance13 in reply to Hidden]

Or "if"!

[PMRpro Ambassador]

No - the time line is "a median duration of pred for PMR of 5.9 years" - that includes the time it takes to get off pred after the PMR is in remission. To have a median - you must have higher and lower figures. But this paper does give some percentages and times:

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

(same paper, slightly different empahases in the articles)

Age of onset has been over 55 for years, more recently 50. But the AVERAGE age of onset have been 72 for many years. Unfortunately some doctors appear not to have registed what "average" means - some older, some younger.

PMR is generally now accepted to be a vasculitis, a part of the spectrum of GCA, LVV and PMR. Much of the change in classification is because of advances in imaging and other testing which means they find antibodies and other things that are common to 3 apparently different illnesses.

academic.oup.com/rheumatolo...

There are beginning to be noises that fibro also may have an autoimmune component but the jury is out. Most a/i disorders are life-long - but some do go into remission naturally. PMR and GCA are unusual in that they are mostly self-limiting and do burn out and become quiescent although it is felt that the predisposition for it to flare up remains for life.

[Christophene47 in reply to PMRpro]

That is interesting; I didn't know PMR was considered in the vasculitis family. I'll take a look at your posted links.

[Omanain in reply to PMRpro]

LVV?

[PMRpro Ambassador in reply to Omanain]

Large vessel vasculitis, otherwise called extra-cranial GCA (not that they can be sure it is giant cells causing the problem without a biopsy)

academic.oup.com/rheumatolo...

Look at Fig 1 - the red oval shows where LVV affects. The rest is a bit heavy-going

[Purplecrow in reply to PMRpro]

PMRPRO Question...in conclusion of article, "PMR ...a varient of GCA... (???)

Should PMR be treated aggressively, as is GCA? It seems to me, we have a more cavalier approach to PMR than to GCA, witnessed by docs recommending rapid taper off pred, even in early phases of PMR.

Also, article is from 2016, anything newer? Appreciate your search skills! J

[PMRpro Ambassador in reply to Purplecrow]

The aggressive approach in GCA is because of the risk to sight, Since the pred doesn't apparently affect the actual disease there seems little rationale in being aggressive with high dose pred in PMR - because that adds to the pred dose. Or at least, that is the argument. Is it correct??? No-one knows.

[Purplecrow in reply to PMRpro]

🙏🏽

[gifford7 in reply to PMRpro]

LVV includes 2 diseases, LV-GCA and Takayasu arteritis [TA]. see:

ncbi.nlm.nih.gov/pmc/articl...

"The term ‘large vessel vasculitis’ encompasses the spectrum of primary vasculitis that causes chronic granulomatous inflammation predominantly of the aorta and its major branches. The two major categories of large vessel vasculitis are temporal (giant cell) arteritis and Takayasu arteritis (TA). These arteritides differ in the age of onset, with the former rarely occurring before the age of 50 years and the latter rarely after 50 years. "

[PMRpro Ambassador in reply to gifford7]

And one lady I know had Takayasu's as her diagnosis for some years and then noticed it had been changed to GCA. She asked why - and was told it was because she was now over 50!

[Hidden in reply to PMRpro]

One of the YouTube videos I watch on Sunday was discussing the "difference".

[prunus in reply to PMRpro]

Just read your reply with great interest. About two years ago the London group had a talk by an Italian professor from one of the London hospitals about cells. I found it fascinating, but as a non medic a lot to understand from scratch. He was able to answer my question as to why one can have a relapse with GCA and yet it does not show in either your ESR or CRP.

[Marilyn1959 in reply to prunus]

What was his response to your question prunus?

[prunus in reply to Marilyn1959]

Basically it depends which cells are being attacked.

[PMRpro Ambassador in reply to prunus]

Can you remember what he said? Or his name - maybe he's published it.

[prunus in reply to PMRpro]

His name is Professor Mauro Perretti, Professor of Immunopharmacology and Dean of Research at Bart's and the London School of Medicine and Dentistry. His talk was : - Research into Inflammation and auto-immune conditions.

[Purplecrow]

🙏🏽 Clarification. J

[animalactivist]

It has a time line.Mine lasted 4 years

[Louisepenygraig]

I've 'only' had it for 2 years now and, like you I was told it only lasted 2 years. I think my GP still thinks it only lasts 2 years. I think I tapered too quickly initially and made the mistake of thinking that as my ESR was normal I was ok to carry on in spite of what my body was telling me. Eventually my ESR went up and stayed up until I was back on 15mg for a while. In August I saw a rheumy and he said to taper by 1mg a month until I got to 11 and then go down by .5mg a month from there. I'm now tapering very very slowly from 10 to 9.5 using a slowed down DSNS taper. I find it quite difficult to tell the difference between steroid withdrawal and PMR pains and my fibromyalgia is an added complication. If/when I get to 9.5 I may stay there for a month. Everything I've read seems to suggest the slower the better!.

[tangocharlie]

I'd like to know this too. Into my 7th year now, but the rheumy thinks there might be other autoimmune things going on rather than the PMR.

[PMRpro Ambassador in reply to tangocharlie]

There have been reports recently of a couple of people who got off pred after 11 years - so hope springs eternal! But 5% of patients with PMR are thought to have a lifetime version.

[tangocharlie in reply to PMRpro]

I had a Depo-Medrol injection just over a month ago and apart from the increased appetite it's been fantastic, given me so much energy and ability to do stuff, which shows that whatever it is that I've got, steroids still work wonders. No weight gain, unlike the oral Pred, but the hunger pangs make it harder to stick to a low carb diet though.

[PMRpro Ambassador in reply to tangocharlie]

I found low carb removed the hunger pangs - no swings in BS. I am only ever hungry now after I have eaten carbs in any quantity.

[tangocharlie in reply to PMRpro]

I've been doing low carb for about 18 months but appetite has definitely increased since the injection

[PMRpro Ambassador in reply to tangocharlie]

Yes - but with low carbs you can eat more of other things and still not gain weight.

[tangocharlie in reply to PMRpro]

I am eating more, still low carb, but always hungry, I can't seem to fill up on mange tout! I was fine before the injection. I'm experimenting with fasting, going to do another 3-dayer next week, I've done a couple now but not one since the injection, hopefully that should calm things down.

[Hidden in reply to tangocharlie]

Mange tout with a bit of cheese sounds better. 😂

[tangocharlie in reply to Hidden]

Ha ha yes it does. I can't eat cheese as it's high histamine, but I could dip it in cream cheese!

[Hidden in reply to tangocharlie]

Brilliant. Sounds nice.

[PMRpro Ambassador in reply to tangocharlie]

Someone has already said it - are you really hungry? Often people think they are hungry when actually you are thirsty. Often it helps to go and get a large glass of water to drink first when you feel hungry and find something distracting to do. The feeling often passes.

I also found that the 5:2 (days) approach to fasting helped me readjust portion sizes as a start and now I do the 16:8 (hours) version of intermittent fasting. Not deliberately, I don't "do" breakfast (unless it has been paid for at a hotel!).

And believe me - I couldn't fill up on mangetout, I love them, I can eat a whole pack without a second thought! Luckily they don't exist here. They are better for low carb diets with butter ...

[tangocharlie]

The mange tout or the cream cheese? I wolf mange tout out of the packet like they're crisps!

[Purplecrow in reply to tangocharlie]

Ooohhh, sugar snap peas. Love them! Toss them on the grill too!

[PMRpro Ambassador in reply to Purplecrow]

They are even better

Especially with cream cheese and butter!!!!!

[PMRpro Ambassador in reply to tangocharlie]

So can I!