Polymyalgia rheumatica solutions

[Painting1]

I am 82 female. Polymyalgia rheumatica diagnosed Mar 2018. Was down to 3mg from beginning 10 mg prednisone. Much discomfort back to 5mg, now in Jan 2019 down to 3mg hoping to get off prednisone couple months. Going ask doc if arm shot of solo-me drol might work in place of prednisone. I read a post here from someone who did that and thought it was good solution. Hair thinning only noticeable complaint about prednisone.

[yogabonnie]

I am so surprised how far down you have come. Surprised first you started at 10 and not 15 and that you are down to 3. If you have any aches and pains don't drop further. stay there for a month at least! I don't know anything about the shot you speak of. BUT don't hurry. A flare will be a big annoyance and then add time to the whole thing! Look up Taper in the search box at the top. You will see that no one goes quite so fast as you. Maybe PMR pro and others will give you more information. Good luck! Bonnie (at 5mg. after starting at 15 and beginning 15 months ago.

[Daisychain12 in reply to yogabonnie]

Great answer Bonnie and well done xxxxx

[Bronni]

I had one sided atypical pmr symptoms and started on only 7 mg of pred, which did the trick beautifully. Off pred completely after18 mos. - relapsed after a few months, which apparently is very common. So don’t be disappointed, if this happens to you. Now 4 years still on 2mg, but feeling good. Sometimes it just takes longer than you think. We are all different. Hope you achieve your goal B 😊.

[Daisychain12 in reply to Bronni]

Gosh Bronni you have done so well xxxx.

[Bronni in reply to Daisychain12]

Yes, dc, I think I’m very fortunate. The first 6 mos of pmr without treatment were torture, but after taking pred , the last 3 1/2 yrs have been very comfortable. But I know I’m not there yet!

[DorsetLady PMRGCAuk volunteer]

Hi,

Like yogabonnie I would say your reduction has been very quick - obviously too quick if you have had a relapse.

If you have no other noticeable side effects other than hair thinnning why are you considering another form of the drug. A “shot” is usually only given for one area of pain, not for PMR per se.

As for being off Pred within a couple of months, I think you may be overly ambitious. 2 years is absolute minimum for PMR, median time is 5.9 years.

[Painting1 in reply to DorsetLady]

I was on 10mg march then doc said go down a mg every month and in October I was at 3mg. But started feeling bad so he said back to 5 then taper same again so here I am January 1 at 3 again and fearful of aches returning. Going back to 5 doesn’t seem bad idea except I do wonder what else prednisone might be doing to my osteoporosis...or who knows. Anyway thanks for your comment. I do not know anybody here whojas PMR so to find so many comments is very helpful.

[DorsetLady PMRGCAuk volunteer in reply to Painting1]

Hi,

What your doctor should have said was - reduce once a month, but only if you have no return of symptoms!

As Bonnie said, 10mg is very low starting dose as well - maybe it didn’t mop up all the existing inflammation before you started reducing.

Probably would be good idea to go back to 5mg, make sure you get rid of all inflammation/pain and then I would suggest you reduce by only 0.5mg per month - makes it easier - the general rule is not to reduce more than 10% of your existing dose, and obviously that gets more difficult as you get to very low doses.

Tablets can be cut with a pill cutter so long as they are plain white ones and not the coloured coated ones.

Any dose below below 5mg is not going to cause much in the side effects line, but you should be taking VitD and Calcium supplement for your bones.

[marigolds in reply to DorsetLady]

Hi DL. I am now on 6mg and seem to be coping and am contemplating reducing by .5 for 2 weeks then 1mg for 2 weeks rather than 1mg month what do you think?

[DorsetLady PMRGCAuk volunteer in reply to marigolds]

Should be okay, but when you get to 2nd part of month and are on 5mg just make sure there are no return of symptoms before you think about reducing again.

We are all slightly different, and sometimes reducing is easier than at other times. You just have to go with what you feel happy with really.

But remember the lower you get sometimes it becomes more difficult - the percentage reduction becomes bigger. In respect of a 1mg taper from 10mg to 9mg is a 10% reduction, whereas 5mg to 4mg is a 20% reduction! That’s what the doctors don’t always get!

Good luck,

[marigolds in reply to DorsetLady]

Thanks would it pay me to cut them smaller if I can. Re 5 to 4 mg etc

[DorsetLady PMRGCAuk volunteer in reply to marigolds]

I did from around 6mg to zero. You can get a pill cutter from any pharmacy - only a couple of pounds or so!

[marigolds in reply to DorsetLady]

Thank you so much I will give it a go.

[Painting1 in reply to DorsetLady]

Thanks. Am at 3mg but mid month will increase dosage if start feeling very stiff.

[Daisychain12 in reply to DorsetLady]

Thank you for always being so patient with your wonderful explanations xxxx

[Daisychain12 in reply to Painting1]

Painting dear you are in the right place! Xxxx

[MartiFL]

My rheumy also started me at 10 mg Prednisone late April 2018. She left me to my own devices to taper. So, using the DSNS method, I am only at 7.5, tapering to 7 mg.

So far, so good. I’m in no rush and feel pretty good!

Knock on wood...

P.S. Wonder if it's a US thing to start patients on lower dosage. I’ll ask her when I see her later this month.

[Painting1]

I could not believe the doses of 60 to 80 mg I read about on this site. My blood sedimentation rate was sky high the doc said but 10mg was enough to relieve that awful sudden stiffness. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to Painting1]

The doses of 60-80mg are for GCA not PMR. Much more serious disease and can lead to sight loss - partial or complete if not treated with enough Pred.

I know - I was undiagnosed for 18 months and ended up losing sight in right eye. Started at 80mg.

[Daisychain12 in reply to DorsetLady]

😭😭😭😭

[Daisychain12 in reply to Painting1]

That strikes me as odd but I am no expert xxxx

[Painting1]

Going to read about GCA

[PMRpro Ambassador]

It doesn't matter HOW it is administered - the potential side effects are the same.

Stop expecting to be off pred by any specific date - it doesn't work that way. If you only ever needed 10mg you have been very lucky and if you are OK on 5mg after just 9 months or so that is amazing. Solu-medrol injections do work in PMR and may have some benefits - but they can be quite painful as they are quite large injections into a large muscle.

If you are good on 5mg, that is considerably less corticosteroid than your body makes anyway. If you get to less - your body will just top it up as you must have it to function. But PMR doesn't last only a year - the median duration of pred treatment is 5.9 years and older patients are often on pred for the rest of their life. If your doctor doesn't know this - he should do.