Long time pmr sufferer

[Mipsie]

It’s now ten years since I was diagnosed. I am still on a low dose 3mgs prednisolone but I have to up it when things get a bit painful. My rheumatologist said ‘ try reducing by 1mg and usual dose every other day for a month then lower dose for a month, then repeat. It makes it a very long process but ‘hey’ it’s better than having unpleasant results. My 3mgs for ever was because of my age, supposing it wouldn’t be many years, but here I am five years later 😀

[PMRpro Ambassador]

He thinks that is slow does he? Refer him here...

If you need 3mg to manage your symptoms after 10 years and have to go up at times - there is little likelihood you will get lower is there? It is a low dose and not causing much in the way of side effects so why is he trying to get you to go lower?

I've had PMR for 14 years, been on pred for over 9 years and much of the time need between 7 and 9mg to be really well (which I insist on) but every couple of years I flare and need 15mg again. I haven't crumbled yet - no loss of bone density, no diabetes, no cataracts (I wish) ...

[Hidden in reply to PMRpro]

🤯

[PMRpro Ambassador in reply to Hidden]

That's why I consider myself a pro...

[Hidden in reply to PMRpro]

I can't disagree with that....

[Bronni in reply to PMRpro]

Good to hear!

[SheffieldJane]

Do you know what? That is a harmless and maybe very therapeutic dose. I would stay there! Long life, health and happiness Mipsie! 💐

[Hidden]

....you had me at "...en years since I was diagnosed." 🤯

[jinasc]

Put Synacthen Test in the search box at the top right hand corner of this page.

[Bonnie-ma]

Hello Mipsie, your journey is very similar to mine.

I, too, have been jogging along on 1 mg for years and every time I try for zero all hell breaks loose and I up the dose to 2 mgs for a week and then back to my comfortable 1 mg. I have always been described as atypical with my PMR and was never on more than 10 mgs of Pred even from the start - and then only for three days - it sent me into a strange aggressive mental state. I had to ring my Rheumatologist who said “this shouldn’t happen at just 10mgs.’ What I am saying really is that we all seem to be so different in our journey through this strange condition. Some have to hit it hard at the beginning and manage to shake it off after a few years and then there are those like me and perhaps you who seem to need a very tiny dose for what might be forever. I have a slow growing cataract in one eye but nothing else related to Pred use. No medic I have had contact with (including a couple in my family) are the least bit concerned about long term use of low doses. So far!! I also want to mention that at the beginning I only ever had pain in one upper arm and not the ‘bilateral’ pain that is always regarded as needed for diagnosis.

I am waiting for the research that tells me I have been killing myself off with long term low dose Pred but haven’t seen it yet.

Keep rocking .... I don’t worry about it anymore. ..ten years’ on and not counting! Surely you could be managing the dose yourself now.... I certainly do.

[Bronni in reply to Bonnie-ma]

My experience has been very similar. When I finally agreed to take prednisone, my max dose was 6.5mg and I had to build up to that. When I started on 5mg, it made me into a raving maniac! Now after 4 yrs 1.5 mg seems to be a good maintenance dose, but the drs are not as content as I am. They don’t seem to be able to accept anything but zero Pred as a good outcome!

[Bonnie-ma in reply to Bronni]

Glad to find you ..... now I feel I am not as strange as I thought.

[Bronni in reply to Bonnie-ma]

Likewise! I carried on for 4 yrs doing research, but never meeting anyone in the 'same boat'. This group is very comforting 😍

[piglette in reply to Bonnie-ma]

Did you ever try 1mg every other day out of interest?

[Bonnie-ma in reply to piglette]

Yes I tried 1mg every other day. No go. I tried adding or subtracting half a tablet or even adding a few grains using my pill cutter but I never managed to creep under the radar. Could it be something to do with the weather? I only ever used to suffer a migraine on sunny days...... true.

[piglette in reply to Bonnie-ma]

I cannot think of any other bright ideas, but just hope the sun doesn’t shine!