Stuck !

[aladymo]

I am having a flare trying to reduce from 25 mg. ( most people have flares it seems reducing from 10 mg down!!). I have a head ache and temple pain Tylenol not helping. I went to 23 mg for a week then back to 25. Pain is worse. Any advice?

Maybe I should be so lucky and it’s a migraine! ( never had one)

[Grammy80]

Since I am in the same boat you are I can offer support more than advice. Do you think going back on the Actemra would help in the decreasing of the steroid? Last September I had a staph infection and stopped my Actemra for two months. My rheumy wanted to have me back on it for two months before I started reduction again. I could feel the difference with and without it. I just went to 14 mg per day and will stay on this for a month.

I was diagnosed in August 2019 and have had problems tapering. Since joining the forum, however, I tend to listen more to my body and take it slow. Everyone is so unique and it seems the more seasoned gals indicate patience and time are our better servants. Have you had recent bloodwork? although for me that is not always a clear indicator. 💖🤞🤞

[aladymo in reply to Grammy80]

My bloodwork has not changed in 3 years. It Was off the chart at beginning , then on pred and it has never risen since ( even with flares!). Thanks Grammy !! Appreciate your input. Hope you are doing OK♥️

[PMRpro Ambassador]

Contact your doctor - it really isn't something to mess about with.

[2013mayo]

Hi

I too have had several relapses since being diagnosed sept 2019,

I was on various doses of pred, often getting relapses at 30-40mg.

For me it’s now become normal for relapses no matter what strength you are at.

Hope you get better soon.xx

Ps, I’m also taking TCZ

[PMRpro Ambassador in reply to 2013mayo]

Are you reducing OK on TCZ?

[2013mayo in reply to PMRpro]

HiNo TCZ hasn’t made any difference, I’m still taking it as my rheumatologist wants me to?

🤔 xx

[PMRpro Ambassador in reply to 2013mayo]

Then whatever you have it is unlikely to be GCA or PMR. Biologics are very specific and if it isn't inflammation due to L-6 then tcz won't work. I really would want a very good reason for being told to carry on with it and/or a second opinion.

[2013mayo in reply to PMRpro]

Rheumatologist told me my blood results were good since taking tcz, but they also found positive halo results of ultra scan on temples.

[jinasc]

Do as PMRpro says and contact you Doctor asap. Never, ever mess around with GCA. It is your sight and if it goes either partially or wholly then it has gone.

In the meantime try this............spread your fingers through your hair and GENTLY tug all over, each hair has a little muscle attached and this relaxes that muscle. Bit like Shiatsu.

[aladymo in reply to jinasc]

Thank you.