Me again- flare

[Blackcatlover]

A little over three weeks ago I had a flare after reducing my prednisone from 4mg to 3.5 using the DSNS method. I followed instructions and added 5mg for ten days for a total of 9mg. At the end of the ten days I was much better but maybe not totally better. After the ten days I reduced my prednisone to 7mg because I always have trouble reining in my flares but after a week I’m getting worse. Took 8 mg this morning but not much better. Neck, shoulders, arms and piriformis muscles all involved. Sorry to be a bother but not sure what to do. To complicate things I’m due to have my second Moderna vaccine on March 8. Will being on too much prednisone negate the vaccine?

[DorsetLady PMRGCAuk volunteer]

Hi,

Bad luck on increase not working to plan.

If it were me, I think I’d try 10mg with fingers crossed hoping it’s enough....and if it is, maybe stay there for 10-14 days. Then you need to think about your reductions.

If you keep having issues with flares then maybe your illness is telling you not to reduce at the moment....winter is never a good time.

You will get back down someday, but not just now.

As for the vaccine.... your immune system is compromised anyway so you may not have as much protection as others, but it’s not going negated.

[Blackcatlover in reply to DorsetLady]

Thanks DorsetLady. Looks like ten is what my body needs. Hate to go back up to ten when my body was doing so well at 4mg. Whenever I flare it just takes so much to get back.

[DorsetLady PMRGCAuk volunteer in reply to Blackcatlover]

Unfortunately that’s what happens when you continually flare........the art (as we know, but can’t always achieve) is not to flare in the first place...if only 🙄

[PMRpro Ambassador]

If you are in trouble with the pred - what about me? I'm on 13mg at present after managing to get down from 15mg.

The trouble is, there is no way to know if this is a flare because I went too low, or because the disease activity is higher than it was some weeks ago. I'm sure the disease activity waxes and wanes and depending on the periodicity we may manage to get to a lower dose on the way down and then a bit later, on the way up, it isn't enough again.

But I will also add - the bits that are bad COULD be due to myofascial pain syndrome, that would happen for me. And they react better to locally directed management. For me I'd start with 800mg ibuprofen one morning and a couple of days toasting my back against a heat source. Been there yet again recently, unfortunately my physio appt has been delayed (not Covid related though). But the brufen and the hot water bottle worked nicely...

[Blackcatlover in reply to PMRpro]

Thanks. Sounds like a good first plan of attack. It does seem as if left side hurts more than right. Hope that’s what it is.

[Blackcatlover in reply to PMRpro]

Used heat on neck and shoulder pain and getting great relief. Will take pain meds tomorrow. Thank you.

[Blackcatlover in reply to PMRpro]

Used lots of heat today and gentle stretching. Can’t take ibuprofen because I’m taking Actemra but the heat has really helped. Almost pain free. Realize I’m not experiencing a flare. Will start reducing my prednisone. Thanks so much.

[PMRpro Ambassador in reply to Blackcatlover]

Why can't you take ibuprofen because you are on tocilizumab/Actemra?

"Can other medicines be taken with tocilizumab?

Tocilizumab may be used with other arthritis medicines including:

- other DMARDs such as methotrexate

- steroid medicines such as prednisolone or cortisone injections into the joint

- anti-inflammatory medicines (NSAIDs) such as naproxen (Naprosyn) or ibuprofen (Brufen, Nurofen)

- simple pain medicines such as paracetamol.

There are separate information sheets for the medicines mentioned above.

Tocilizumab cannot be used with other bDMARDs."

arthritisaustralia.com.au/m...

[Blackcatlover in reply to PMRpro]

Much better info than my rheumatologist gave me. He told me never to use anything but Tylenol.

[PMRpro Ambassador in reply to Blackcatlover]

Why don't they check before opening their mouths? Though I suppose it is possible that he has had RA patients with problems using ibuprofen, It isn't advised with pred really but with care the occasional dose is OK

[Blackcatlover in reply to PMRpro]

I have been applying heat on my neck and piriformis muscles for two days and I’m getting great relief. Thanks so much.

[PMRpro Ambassador in reply to Blackcatlover]

The old-fashioned ways have their place

[Grammy80]

You've gotten feedback from the best. Each time a post such as yours appears and DL and Pro respond, I gain knowledge and acceptance. I hope going up a bit helps...along with the hot water bottle~!!💖

[Blackcatlover]

We are on the same schedule. My next vaccine is March 8th too. Never thought it could be the vaccine. I had a headache on and off for two days and the third day I had a low fever on and off. The fourth day I felt much bette. It was about a week ago I thought I was having a flare. Went up on my prednisone but didn’t get any relief. PMRPRO suggested heat and it has made all the difference. Almost feel totally normal. Was it the vaccine? I don’t Know. I’m slowly working my way back to 5 mg of prednisone. Hope you feel better.

[Blackcatlover]

Im sitter on a heating pad and have a beanbag microwave neck pad on my neck. Feel so much better. Have you tried that?

[Blackcatlover]

Mine does too. I could only have just one of the pneumonia shots because I reacted so badly to the first. I think you need your prednisone to deal with the inflammation. I took mine and I think I’m just a little ahead of you with pain. Good luck and be well. Let’s keep in touch after the next vaccine jab. Oh, I’ve gone to every ten days for Actemra. Sort of an in between instead of going back to every week.