Slowly reducing from 2.5-2mg need some advice please

[9lives]

Hi everyone one hope things are improving for you all.

In my 3rd year PMR and taking it slow but not sure if this is a slight flare or not. Since about March my right arm aches and also my collarbones. Saw Dr. She said I had sprained arm which would effect collarbones, so bit of rest and physio and take ibuprofen .

Then more recently both knees/ legs are a bit stiff.

Well I’ve been taking the ibuprofen on and off and all the aches and stiffness goes away including knees. My Dr thinks it’s not the PMR.

But obviously I cannot take the ibuprofen indefinitely, I have not reduced anymore just in case. And will arrange another Dr appointment to discuss further. But always a long wait for appointment.

Would welcome any advice.

Thank you

Carole x

[PMRpro Ambassador]

If you feel better at 2.5mg than 2 then I would mark time at 2.5mg for a month or two and then try again. Usually if the pains go with ibuprofen it suggests it isn't PMR but the increasing discomfort may be saying otherwise. This is such a low dose I'd rather take an extra tiny bit of pred than regular ibuprofen. And try again later.

[9lives in reply to PMRpro]

Thank you PMRpro, for your swift reply, I guess that’s what I’m wondering really. As you say it’s better to be on the pred than the ibuprofen. I’ll stick where I am for a while and maybe try reducing again in a few more weeks. My GP is very good and says take as long as you feel need. Although that said my repeat prescription is in 1mg prednisone now 🙀x ha ha

Hope you are doing good x

Carole

[Charlie1boy]

Interesting. I'm alternating 2.5/2mg every day, and have been doing this for two weeks. I wouldn't say I was in any pain, but I had occasional reminders that the PMR was still around. Then last Friday I had pain at the top of a thigh, which I did not think was PMR.

On Saturday I took 4mg of pred to see what happened, and to mop up any PMR inflammation that I feared might have built up.

Next day all had cleared up, and I went straight back to my 2.5/2mg programme.

Not saying this would necessarily work for you, but it did for me.

Good luck.

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

But the same thing may well happen again if the daily dose is even a tiny bit too low ...

[Charlie1boy in reply to PMRpro]

Yes, I do understand that PMRpro, and, if it does, I will revert to 2.5mg, where I was fine. For me, the .5mg reduction has always been tricky.

Thanks, as always, for your reply.

[9lives in reply to Charlie1boy]

Hi Charlie1boy

Thanks for that, I did try going up to 5mg for a couple of days and nothing changed , so I think I will just stay where I am and see what happens. It is manageable and I am trying to rest a lot more as I do get carried away and do a lot more than I should.

I think PMRpro is giving you really good advice, try not to rush into reducing.

It’s like playing snakes n ladders !!

Good luck

Carole

[Charlie1boy in reply to 9lives]

Yes. Definitely good advice from PMRpro; I've been following her now for over four and a half years, and no flare so far!

My problem is less to do with tapering, and more to do with trying to do too much. I really need to practise what I preach.

Good luck

Paddy

[9lives in reply to Charlie1boy]

Yes your last sentence sounds exactly like me, all do and no talk !

But it’s really hard to rest up sometimes. As we all know to well.

Good luck in your reducing and trying to do less .🤣

Carole

[maureenburton]

I'm at my third year and on 2mg. I too have stiffness in legs - been diagnosed with tendonopathy in my hip so not sure if linked to that or PMR - it's really difficult. I can't walk far without really stiff sore legs and can't walk up stairs and also have trouble getting out of the car.

Maybe try ice packs on your legs incase it's a bit of inflammation.

Sorry I can't help much but do empathise.

Maureen

[9lives in reply to maureenburton]

Hi Maureen,

Thanks for your reply, sorry to hear that you are struggling too. It’s good you have a diagnosis, at least. I guess we are on the same journey here, 3 years in.

I’ll try the ice packs as you suggested and see how it goes. It feels like my muscles are stiff, if that makes sense.

Thanks again and good luck.

Carole x

[maureenburton]

Yes that's exactly how I feel. Like walking in armour! My physio said you feel like you want to pour WD 40 into you legs and that's exactly right!

Good luck - hope it burns out for us both soon x

[9lives in reply to maureenburton]

Ha ha x