how long have you had this for?

[Caulkhead63]

i have read several different things about how long you can have this for making it very confusing

[DorsetLady PMRGCAuk volunteer]

Hi,

Hi and welcome,

Afraid no one can say that for certain..many sites say 2years, and for some that’s true, but for many others it’s longer……anything up to 6 years….but average is around 4years.

You might like to have a look at this - healthunlocked.com/pmrgcauk...

[Seacat30]

I have had PMR for 17 months.

I don't think that there is a particular time limit for how long you can have it. More than 1 year, probably more than 2 years, maybe 3, possibly more than that, perhaps forever???

[SheffieldJane]

PMR - the average is 5.6 years I believe (PMR). Mine morphed in GCA about 3 years ago. I was diagnosed in February 2016. I think the duration of GCA alone is a bit shorter. Doctors tend to say two years due to out of date information unfortunately.

[Koalajane]

I have had it for 5 years now, no sign of it going yet

[Rose54]

7 years for me I’m back on 15mg which was my starting dose

[Nightingales in reply to Rose54]

Oh Rose54 I sympathise. I have had it for seven years and back down to 12.5 for the last three months after a severe flare. I had to go to 30 to get any relief and see my CRP go down. Now it’s climbing again. It’s a medical mystery tour! So demoralising at times.

[Rose54 in reply to Nightingales]

Good luckI have been on 15 for 3, months

Going to reduce to 12.5 on Monday .

Fist my cousins husband passed then l had family visit and for last 6 weeks have been dealing with back problems. Have a COID vaccine THursday . So nothing on for next few months.

It’s the extreme fatigue that gets me .

Just got up and already to go back to sleep

[PMRpro Ambassador]

Half of people with PMR need pred for about 6 years - that doesn't mean the PMR last that long, they also have to be able to get off pred because of adrenal gland function considerations.

It is thought about 5% of PMR patients have it for the rest of their lives - of course some of them were much older when it developed but another group who seem to often have it for a long time are very young patients. I was 51 when I had the first symptoms and I still have symptoms without enough pred 18 years later.

[Miserere in reply to PMRpro]

Bless you!

[autumnlass in reply to Miserere]

Too young Pro. However you’re indispensable and thank you for being with us!

[Nextoneplease in reply to autumnlass]

👏👏x

[Mcdurmott in reply to PMRpro]

So sorry you’ve had this awful disease for so long, PMR pro, but your words of wisdom have helped countless people. You’ve spun hay into gold. Thank you. 🌺

[arvine in reply to PMRpro]

think I mentioned I finally started going to another rheumy, after 51/2 yrs with my original, so after checking previous bloodwork results, on his computer, and seeing the markers not raised,decided was not PMR, and went ahead and ordered MRI, results showing osteoarthritis, I did question fact that markers would not be raised while being on right dose of pred over yrs, he agreed, told him of all my muscle, joints hurting been noticeabley worse over last number of mos, and been on 5 mgs of pred for at least last 2 yrs, and seemed to be not too bad for months, in 2020-but yr ago last DEC, so DEC of 2021 started to have problems, even on the 5 mgs, so plan is for me to get off pred, so am currently tapering to 4 mgs, and will see him on Sept 7, so somedays have a lot of hurting muscles, joint, mainly muscles, and still can only take tylenol, which doesn, t really aleve too much. I should add, now my son, has been diagnosed with leukemia, couple mos ago, was in PMH ,for a month, having treatments, now top dr has recommended bone marrow transplant, this is the son that has already had the stem cell transplant in Jan 2018, dr says the maintenance drug he was on is most likely side affect, causing this secondary cancer. So this new sitution is very difficult, but I do want to try get off prednisone, since I understand long term, does cause problems, ie, muscles pain etc, , so just relating latest situation , and really, how does PMR get diagnosed, ? on this forum have seen bloodwork, markers do not necessarily indicate this disease is still ongoing, ?

[PMRpro Ambassador in reply to arvine]

PMR is diagnosed on symptoms, response to pred and for 80% of patients, raised markers. It can also be diagnosed using PET-CT when the patient isn't on pred

[suzy1959]

Me- 10 years on around 11mgs pred and counting…..

[Twopies]

6 years next month, I’m at 6 mg. I still cite the Mayo Clinic study to my doc—median time to discontinue pred was 5.9 years—median time, not “most”. Other studies say differently, other docs (most) say differently, it seems to ring true for me.

[Nextoneplease]

18 months so far since diagnosis (more like 2.5 years since symptoms began). Still tapering down (hopefully) from 11mg to 10 mg…

I was told at diagnosis to expect two years maximum. Think it will definitely be quite a lot longer…..

But do bear in mind there may be a tendency to have more long stayers on this forum, by it’s very nature.

[autumnlass]

I’m 2 years 1 month…. as Nextone please just said .. thinks it will be longer than told at diagnosis. Managed to get nearly down to 7.5 mgm, but last Thursday PMR said ‘Hello dearie … I’m paying you a visit..’ Thanks I said - I knew you’d be back’ and took some of ‘them tablets’. 😅

[SusyTe]

Diagnosed at 53, will be 60 in January. No sign of getting to remission yet. Have got as low as 4.5 mg but currently back on 10 mg.

[Bridge31]

3 years. Got down to 3.5. Back on 5 now until at least the New Year.

[headgirl]

10.5 years for me, diagnosed aged 53. I did reduce pred to 7mg but currently back on 12mg.

[Temeraire]

4 and a half years so far. Currently tapering to 7mg (2nd attempt). Disease still active for sure! Not complaining though. Pred works thankfully.

[scrambledegg]

6 years for me. Currently trying a very slow taper from 9mg to 8.5mg after several earlier failed attempts. This is the lowest I’ve ever got and felt comfortable with so feeling pleased with myself. Little things eh?

[Floridafan]

I’ve had PMR for nearly 4 years. The first time I saw the rheumatologist she told me it would be gone in 12 months………as if! The only thing that went was her….. to Canada!

[Bonnie-ma]

11 years (with one year remission half way). Suspect I will always stay on current 1mg, tiny dose but vital.

[cranberryt]

3 years for me… down to 2mg and probably gonna be there for a while.

[Manchild]

4 years now, and “trying out” 2.5mg…

[Purplegloss]

4 yrs and 10 months for me so far. Started at 20mg, had a few ups and downs, but now on 3mg and feeling ok. Probably stay at 3mg for a month.

[Wizards]

Hi there7 yrs and never a flare, dead slow method all the way and months in-between tappers. I'm now at 1mg.

[Suffererc]

4years 7 months since diagnosis. First notices 3 months previous. Currently on 2.5/2 Pred . Taking my time this time b4 going completely to 2.One days GPs will update hopefully

[jls93]

initial dx tok 3 yrs , current episode 5 yrs and counting.

[nuigini]

Eight years for me and still counting. Diagnosed in February 2014 at age 64, may have had it ror 6 years prior. Took a while to get the right dose, but pain free for my 65th birthday mid-March.

[67Blue]

20 months since diagnosed, I had the PMR for awhile before diagnosis but then GCA came along and they gave me 40 mg, When I got to 7mg the Dr said I "had" had it when I said bearing in mind I have PMR and GCA. After a quick start to reduction (even the rhumat said it was too quick)I am now doing my own thing--- ie a month for a 1/2mg drop instead of 1 mg. As directed by the Rhumat, but i haven't seen or talked to him for about a year So not even that quick if i don't feel like it. I recently asked the Dr about the Shingex vaccination and he said I may as well wait till I'm off the steroids now i'm down to 2 mg. But not interested in how I feel. As I'm struggling a bit now I doubt I will be off till Christmas, If I'm lucky, but have been very lucky so far, Gone from fat face and neck to skinny face and neck with paper thin skin, and some odd rashes had 2 steroid inflicted cataracts off and often feel like i can 't be bothered getting out of bed, but nothing I can really pin it on.Have led a very quiet boring Pandemic staying safe and not had any holidays or exciting outings, so do feel like I'v wasted the time. But hay ho lots of people are so much worse off than me. Sept is to be my "coming out" according to my friends-- we will see. Good luck and a speedy complete recovery.