Anyone have discomfort or pain when tapering off prednisone?

The MTX is an immune blocker to keep your system suppressed. This allows you to lower the prednisone dose without increasing inflammation. But it does nothing for restarting your bodies cortisol. So it didnt work. Other drugs like Kevzara may not work either. Your body does not want to restart. Since 2023 is not that bad. It should restart. You might go up for a few days and then drop back to 5mg. You can play with a little back and forth during the first week. The fact you cant restart does not make you weak. Your body has to have cortisol. Go back up a few days and try to get back to 5mg . Then very slowly taper. Try a 5-4-5-4 for a few weeks. Or maybe a 5-4-5-5-4 . Your body needs to be coaxed into restarting.

Don't expect an immediate change when starting Kevzara but try to be optimistic. Kevzara doesn't come with any guarantees but I think it is something worth trying.

I started Actemra five years ago for refractory PMR. I wasn't able to taper off prednisone until a year later. I tapered my prednisone dose by 1 mg per month for the first 3 months down to 7 mg. I wasn't optimistic that Actemra would work because of how many times my symptoms returned when I reached 7 mg. I figured a flare was inevitable so I tapered by 1 mg per week. Surprise ... no flare and I found myself in uncharted territory on 3 mg of prednisone.

I was aware of the "adrenal issue" so I contacted my rheumatologist to see what I should do. My cortisol level was checked and it was low so my rheumatologist said I shouldn't taper any lower than 3 mg.

I was referred to an endocrinologist who wanted me to stay on 3 mg until my cortisol level improved. I stayed on 3 mg for six months when my endocrinologist said my cortisol level was "adequate." My endocrinologist said she wasn't sure what would happen if I stopped taking prednisone but she encouraged me to try. She said I could go back on prednisone if I "felt the need."

There was a need to restart prednisone the first time I stopped prednisone. The second time was a breeze and now I have been off prednisone for 3 years.

Good Luck ...your experience with Kevzara may be different than my experience with Actemra. I still do a monthly infusion of Actemra. All my Prednisone related side effects are gone or are improving.

Thanks so much! I'll try it starting tomorrow. Your response has given me hope. And that is what I needed.

@tuckerp Hope you got my response. I so appreciated the information.

Hi I started on 20mg of prednisone for PMR 4 years ago. Had difficulty tapering down so started KEVZARA a year ago, I am now down to 8 mg. Doesn’t seem to bother me with any noticeable symptoms.

I have back pain all day. I had a double spinal fusion in 2022 with very bad osteoporosis. The prednisone really scares me because of my bones. I was thinking of trying the spinal nerve block but now I can't because of the steroids. I truly believe my back pain is from my PMR. My rheumatologist doesn't think that's the case. I just know when I was at 10 mg my pain was so much better. I can't even go for a walk without terrible pain. I now take 7,5 mg one day and 5mg the next. I'm also taking methotrexate 12.5mg weekly. I don't feel any different on it.

Dexamethsone 2 mg am and 2 mg pm. So far good results. Could not take 4 mg 3 times a day. Way too much jittery

3 1/2 years. Prednisone cannot get below 5. Doing much better on dexamethsone. Interested in feedback

I took DEX for myself. I had self diagnosed myself and I had Dex available. So I tried it and it worked in 4 hours. Dex stays in your system a little longer than Prednisone. About 20-22 hrs vs 8-10 of prednisone. Its also about 5 times stronger. Dex is still a corticosteroid just like prednisone. It replaces your natural cortisol production with a synthetic version. Dont be fooled that your doing better because of dosage. You will still have trouble getting below the taper point. If it was 5 of prednisone it will be .75 of Dex. I hit the taper wall at 1mg then just fought through it. When you say doing much better on DEX I assume your taking more that the 1mg. There is no difference in what it will do to your body. Here is chart.
https://emupdates.com/wp-content/uploads/2009/11/ICUPocketGuide.pdf-page-53-of-63.jpg

You should have been jittery. Probably on cloud 9. Your taking 4mg of dex. Plus a split dose so you are keeping your cortisol pumped to the top. 4 mg is equivlent to about 22-24mg prednisone. I saw in one of your messages you were taking 5mg prednisone. Thats about .75 of dex. You have not done yourself any favors. They prescribe 4mg for brain tumor inflammation.