Looking gorgeous those who have had pmr for a long period of time

[Schurch]

Has anyone had pmr for over 4 years

[jinasc]

Yes and some have had it for over many more years. PMRpro who posts on here has had it for over 10 years.

There are others who have had it for various lengths of time before it has decided to go into remission.

Are you having a specific problem? Or have you nee told it mainly disappears after 2 years?

We are hear to help if we can.

[Schurch in reply to jinasc]

I cannot get past 7 mIL of pred. Everyone including doctors warn of the side affects to our bones. I am so sensitive to meds I would probably refuse the meds it I get osteoporosis. My doctor tried methotrexate on me. I had awful side affeats from it. It actually gave me the symptoms of temporal artritis and more. Thought it would kill me. Do you get the same warnings from doctors a put the bones.

[Sho-Sho in reply to Schurch]

Re the bones, yes. I have been on pred for 3.5 years starting on a very high dose for GCA, struggled down to 7.0, 2 Rheumatologist I have seen absolutely insist I take Aledronic Acid or Zoledronic infusions, despite my reluctance, because of damage to bones - to be fair my DEXA scan put me firmly with an Osteoporosis Diagnosis. If you haven't had a scan try & get one.

[Schurch in reply to Sho-Sho]

You are brave to take the infusions. With my experience to sensitivity with meds I will never do infusions. At least with a pill if you have a bad reaction you can stop taking it. With an infusion you are stuck. Glad you do ok with it. I am just one of those weird ones that actually can have new side effects to be reported from meds.

[jinasc in reply to Schurch]

If this helps, I had GCA and started on 60mg, dropped to 20mg and then up again to 60, dropped to 30mg again, bingo back up to 40mg. Down to 20mg and then met Ragnar.

I had a Dexa Scan 6 months into my GCA journey, both my GP and Rheumy insisted.

Result bones 97%. I then had a scan every two years, no change. 5 years down the line, remission, last scan 97%. So everyone is different, but a Dexa scan can take away that worry.

Those 2 Rheumys should have sent you for a Dexa Scan and not left you worrying, worry and stress is not good for PMR and can make it difficult for you.

If you have a Dexa Scan and then do need bone protection, go to the Royal National Osteoporosis website and read up on them all and then you decide - taking in all the facts you can.

As an aside, I ran into problems with one of the add-ons handed out like sweeties, we then agreed I would take none of them and if I had a medical problem we would deal with it if and when it arose. Two did and they were dealt with quickly. I had to argue, but we were a 'team' (Rheumy, GP and me), my body, my decision after taking in all the facts they could give me.

I also told them that Pred was one of the oldest drugs (1949 or 59 cannot remember which date) and that all the side effects were known...............all 83 of them and no-one I have ever met has had them all and some of them are pretty rare. The common ones are listed in the paper which accompanies your tablets. (I did get one of the odder ones).

Can I ask, have you tried DSNS or TAH reduction plans or have you 'yo-yoed'?

PS: The trouble is that pred is one of the most powerful drugs we have and many GPs do not have 'long term users' they just have patients who are given pred for no longer than two weeks and low doses. So they worry.

Unless they come across rare illnesses, they do not encounter people take pred as a life saver and some from a very young age. It saves their lives and they are on it for life. A friend's Grandson was 5 when put on pred and then in 2012 aged, if I remember correctly in his early teens, he carried one of the 'flames' in the run up to the 2012 Olympics. Without pred he would not have been alive.

BTW how long you been stuck on 7mg? Perhaps a Synacthen test?

Sorry this is so long, I just want to try and put your mind at rest and help you to realise that side effects can not happen at all.

[Schurch in reply to jinasc]

Thank you so much for all your info It was very encouraging. I have been on 7 for a year. Next visit I assume I will go down to 6. But not sure because i am much better but definitely not anywhere near pain free. Thank you I will check out the website you suggested if I ever need info. I have not had a scan. But was if I would get the Evil big O I will never take infusions. I am way too sensitive to drugs and have had some real bad experiences. Thank you again you gave me some great info I will be taking to my next rheumatologist appointment.

[HeronNS]

Five years.

[podo]

16 years come March!

[Schurch in reply to podo]

Have you taken prednisone all this time. If sone has it affected your bones

[suzy1959]

Nearly 8 years!

[Carrollee]

5 years this coming March. Took last pred dose of 4mg Sunday morning 15th dec. Started Hydrocortisone Monday morning, so far so good. All the best cc 🤗

[Hidden]

Yes, unfortunately Eight Years

[linda49]

5 years last month.

[Visby]

Yes I am 5years now I still hope one day it will disappear.

[cissi]

Nine years

[PMRpro Ambassador]

I've had it for over 15 years now ... I have been on pred for over 10 years and after 7 years of pred, most of it at over 10mg, my bone density had barely changed at all. It isn't inevitable.

I also tried methotrexate and felt worse with it than I had with PMR and no pred!

[stellafmdm in reply to PMRpro]

I think I can keep up with you PMRpro! I was diagnosed in 2016, but I’ve had it since well before 2011. I can’t put a start date on it at all as I just thought it was one of those things until it began to get worse, then I asked to see a Rheumatologist and got a proper diagnosis. I’m currently stuck on 15mg, wrists are still playing up. (A few other things as well but mostly the wrists.) Happy Christmas! And all the best for 2020.

[Schurch in reply to PMRpro]

Thank you that is encouraging. So sick of all the doctors looking at me like the big O is inevitable for me. I am 68 and since I was in my mid 40' because if my small build they all seem to stamp osteoporosis on my forehead. So frustrating

[PMRpro Ambassador in reply to Schurch]

That is what a dexascan is for - so they aren't working blind or making assumptions. It is now emerging that no anti-osteoporosis drugs are safe to be used "just in case" for years - it is recommended that bisphosphonates should be used for no more than 3-5 years without a drug holiday and 5 years is too long in the opinion of many. Once started, denosumab may have to be used permanently or replaced with bisphosphonates when it is to be stopped. It isn't as easy as the manufacturers claimed.

[groovyguy]

10 yrs and yes have some osteoporosis but at least I have had some quality of life. Ian now 78 as per 3 days ago and realise I will more than likely to be on it for the rest of my life.Its a better place to be in than trying to get out of bed for pain.

[Jankie]

I’ve had PMR for nearly 6 years. I’ve been on 2mg for the past year. Luckily I was able to reach 5mg after 3 years which is a relatively low dose

I’ve had a couple of dexa scans and my bone density is fine.

I do as much walking as I can and I think that helps with the bone density.

I think on a relatively low dose there are few side effects.

As Pmr pro always says “it is better to be on a low dose than have it return”

I’ve had a couple of nasty flares trying to go lower but will try again soon.

In a way the Pred acts as a comfort blanket and I’m really scared of getting to zero in case it comes back and bites me in the bum.

Merrry Christmas everyone and a Happy Healthy New Year

And thank you to our wonderful team of volunteers who make this forum such a lifeline and wealth of information for us sufferers of this awful condition

🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🥂🥂🥂🥂🥂

[Charlie1boy]

Just coming up to my fifth anniversary on 31st Dec.

Paddy

[phebamom]

since 1995. Finally getting some relief. I was on Actemra for 6 months. Had a round of Sulfa, and am feeling better now than in past 15 years. Down to 7mg on pred.

[Bodybuilder17]

5 years

[clieder]

Coming up on 5 years in March. Down to 4 recently, but could not hold. Back to 5 and comfortable for now. I was stuck at 6 for a very long time and wondered about adrenal function, but got past that, finally, so it is just PMR hanging on. I think the seasonal changes (gets very cold in Minnesota) affect my ability to reduce, so will settle in to winter before I try again. Ditto the dexa scan. Mine unchanged, but you need to know. 7 is a pretty low dose, so don't panic if that is where you must be for however long it takes to move on. We don't get to decide, unfortunately.

Oh, and Merry Christmas and let's all enjoy relative comfort and an ever-lessening dose of prednisone in 2020!

[Margaret1951]

Hi, I have had pmr and GCA for 6+ years now, on 5.5mg now and counting.

[Purplecrow]

PMR diagnosed Sept 2013. Probably had it for a year before diagnosis.

Prednisone is my friend. Currently using 8 mg.

At this point, no negative side effects. I have had lifelong weight issue, so watching carbs helps control weight, and no diabetes.

Issues with depression, fatigue and Periodic flares, have caused me to settle down and stop the incessant drive to "taper". I am pretty happy at 8 mg, and most of the issues that bother me are osteoarthritis, SIJoint irritation, and bursitis in Trochanter area.

[Greensleeves]

Hi Schurch , I’ve had PMR for over 7 years, have been on a maintenance dose of 5 mg pred for 4 years now . Have managed to get as low as 3.5 mg but felt wretched.

Currently having a flare , with Christmas and family stress and illness.

I don’t overly worry about my bones .

They do throb , but it’s a case of living day to day, and getting through the day . The tapering is very hard . The slower the better.

Take care

[nuigini]

6 years come March 2020 and have had difficulty getting below 10 mg (started at 40 mg). Currently back at 13mg after a flare a couple of months ago.

First dexa scan April 2014, osteopenic, offered bone meds and refused based on own research and this forum. Offered it more times than I can count over the subsequent years. Took calcium and vitamin D. Next dexa scan 2018, slight improvement! Still being offered bone meds regularly by every gp and specialist I've seen! Added K2 to my supplements just before the 2018 scan.

I've now been referred to Osteoporosis Clinic for a two hour class followed by an appointment with a bone specialist. This is a huge clinic in Calgary with wait lists over a year long, which tells me what a big business this has become. I'll go after having another deca scan a month or so before the appointment. Should be interesting.

[PMRpro Ambassador in reply to nuigini]

"with wait lists over a year long, which tells me what a big business this has become"

Exactly.

[Schurch in reply to nuigini]

Thank for your reply. Good to know I am not the only one who refuses Bone building drugs. I probably will still make doctors mad, but I really do not care. I am 68 years old and if it were up to doctors I would have been on bone drugs since I was in my 40's. Back then had no pmr but then they gave me the excuse because I am small boned and petite. Well so was my mother and she lived to be 109 and never broke a bone in her life.

[PMRpro Ambassador in reply to Schurch]

I suspect if they looked more closely they might find that even the small and petite don't necessarily break a lot of bones - they are bouncier perhaps?

[Suet3942]

6 years and counting.