Tapering off of Prednisone

Posted by e @epvb, Mar 27, 2017

I am currently on 20 mg prednisone after tapering down from 40 mg which I was on for 2 weeks. I have been directed to taper down again next week to 10 mg. I am experiencing terrible headaches lasting days at a time as well as neck pain and insomnia. Has anyone found any relief or remedies for headache/neck pain? Thank you.

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@johnbishop

Hi Ferse, Wished I had an answer for you. From my experience, I had more trouble tapering off my first time around where I went back and forth between 1mg and .5mg the last six months before I could be off prednisone with no real pain. The second time around I didn't have that problem because I made some conscious lifestyle changes limiting sugar, processed foods and inflammatory foods. plus more exercise. I recently saw the following tapering plan on HealthUnlocked and think it sounds like something that would be good to try if you run into any flareups while tapering.

-- Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

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i've been doing this for the past couple weeks... so far so good...from 3mg to 2.5mg

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Can anyone comment about what a biologic is and if you have used it to fight PMR? What are the pros and cons of biologics? Please share any links.
Thanks
Ginger

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@gingerraspiller

Can anyone comment about what a biologic is and if you have used it to fight PMR? What are the pros and cons of biologics? Please share any links.
Thanks
Ginger

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There is another discussion that you might find helpful
-- Actemra (Tocilizumab) to treat PMR??:
https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
Here's a reference that also might be helpful:
-- Biologics may help reduce the need for steroids in PMR:
https://blogs.bmj.com/rheumsummaries/2022/04/16/biologics-may-help-reduce-the-need-for-steroids-in-pmr/

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@gingerraspiller

Can anyone comment about what a biologic is and if you have used it to fight PMR? What are the pros and cons of biologics? Please share any links.
Thanks
Ginger

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The following link explains what a biologic is.
https://www.verywellhealth.com/biologics-or-biological-agents-2615117?utm_campaign=15823081431-9b73ed45334a76&utm_source=googleawpaid&utm
Biologics are being used more and more for rheumatic disorders that don't respond to conventional treatments. Biologics aren't usually the first treatment that is tried. The cost of treatment is the biggest drawback because biologics are expensive. Biologics also can have side effects that are potentially harmful just like other medications.

So far, there isn't any biologic treatment that is FDA approved for PMR. My rheumatologist needed to submit a request to get Actemra approved for me. The reason it was approved was that I took prednisone for almost 13 years and I was unable to taper off no matter what was tried. I tried other alternatives like methotrexate and leflunomide without any improvement. Actemra was more like the last resort for me. My rheumatologist didn't want me to take prednisone for the rest of my life.

My rheumatologist didn't know whether or not Actemra would work for me. We are all different so there is no guarantee it will work for everyone.

I was just lucky that Actemra has worked well for me and I haven't had any serious side effects. Actemra allowed me to taper off prednisone. I still take Actemra to treat PMR and some other autoimmune disorders.

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Been on actemra 4 weeks now in combination of methotrexate..side affects are increased coffing flem and blocked sinuses. Had a couple of flare ups which I bommed with 25 mg predisone tapering of over 3 days been able to do some work again. Some lingering pain right thigh inside leg .

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I was very pro biologic until I read up on some of them. I have a neighbor who is on Humera (ulcerative colitis-really saved her) and I realised that, while they specificaly attack some of our bodies immune chemicals and remove them, they don't help the body learn to stop making them. They probably do have fewer side effects than pred but until your immune system has returned to a less active state, you may be stuck with the biologic. They are not a cure anymore than pred is. Best to know that up front.

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From what I've read on this site and others, it seems you are tapering way too fast, but I'm definitely not an expert...

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@lindaf49

I been on prednisone for PMR and GCA since January 2022. I started at 60mg. Once I got to 10 mg I am going down 1 mg a month. First couple weeks I alternate with a .5mg. I’m at 8mg now and getting ready to start weaning to 7mg. The past couple of days I feel like I’m having a flareup. Dull headache, neck and lower back aches. My left leg is week and my thighs hurt. I even had diarrhea. I don’t know if this is a flareup or not. Not sure if I should start weaning down or stay at 8 for a couple more days. What symptoms did you have when you had your flareup?

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Hi - you're one of the few people that have talked about starting at high doses, as I have (though not quite as high). I began at 40, then dropped 5 at a time every 4 weeks, but it still feels like WAY too much.

So after only 2 weeks at 30 I dropped to 25 (where I've been for a few days now with almost no issues). I know that final 10 can be a real grind, but I'm hoping to taper a bit faster than 5 per month. Can I ask you what rate you tapered from 60 and what issues if any you ran into on the way (before the struggles you're currently enduring - I'm wondering about the bulk from 60 to 10)?

Thanks so much.

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@analog

Hi - you're one of the few people that have talked about starting at high doses, as I have (though not quite as high). I began at 40, then dropped 5 at a time every 4 weeks, but it still feels like WAY too much.

So after only 2 weeks at 30 I dropped to 25 (where I've been for a few days now with almost no issues). I know that final 10 can be a real grind, but I'm hoping to taper a bit faster than 5 per month. Can I ask you what rate you tapered from 60 and what issues if any you ran into on the way (before the struggles you're currently enduring - I'm wondering about the bulk from 60 to 10)?

Thanks so much.

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I went down 5mg every week, until I was at 15mg. I was at 15mg for 1 month. At 12.5 mg for 1 mo. Than starting with 10 mg I would go down 1 mg a month. I was determined not to have to go up on the prednisone, so when weaning down, for the first week I would alternate days by lowering by .5 than the scheduled dosage than up .5 and so on. That way if I had any kind of flareup it wouldn’t last but just a few days. This past week I’m heading to 4mg. I’ve been doing 5mg, 4.5mg, 5mg 4.5. On Sunday I will start 4 mg. So far so good.

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Wow. That’s far more aggressive than my rheumatologist wants, but it’s encouraging. Before bloodwork confirmed the diagnosis I started at 40 and dropped 10 a week but it wasn’t great at 20 so I started over. But so far so good and I may take a shot at another 5 in a few days and keep a close eye. Thanks so much for sharing!

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