Adventures in decreasing prednisone: I have been... - PMRGCAuk

PMRGCAuk

21,227 members40,248 posts

Adventures in decreasing prednisone

Linny3 profile image
8 Replies

I have been decreasing pred using very slow method for about 6 months, after being on pred for 6&1/2 years at approximately 15 mg daily.

Everything was going wonderfully. First time ever I had been able to reach 7 & 1/2 mg daily.

Other than being a little more tired I felt good. Then one morning I woke with the worst pain ever in my neck and arm. I have not had that kind of pain since I was first diagnosed. It is a pain that nothing helped, it felt deep in the bone.

I started raising my pred slowly, trying not to take more than I need. Looks like 17mg is the magic amount to clear the pain, but not totally.

What a bummer😟😢

I really thought that maybe the pmr had started to dissipate. Guess not. As many of you know it is very frustrating and discouraging. I feel desperate to get off the steroids as I have many side effects. Osteoporosis with fractures, newly found diabetes, high cholesterol (new), , cataract (new)

Blood vessels that break very easily, and new kidney issues. All in all this disease and treatment has done a number on me.

My question is, I have been above the 7-7&1/2 mg for 8 days. As I said now at 17mg but not total pain control, if I need to stay at this level for another week, do I need to start the whole slow process from scratch?

Thank you for any thoughts on this.🙂

Written by
Linny3 profile image
Linny3
To view profiles and participate in discussions please or .
Read more about...
8 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

The usual advice for dealing with a flare is contained in this link -and really don’t usually recommend you stay at increased dose for longer than 14 days..then you don’t need to start from scratch.

But would suggest you step down in at least 2 steps, maybe 3 rather than sometimes when it can be one.

So 14 days in total at 17mg -[hoping that does it] - then maybe down to 14mg for 5-7days, then 11mg for same time, then to 8 or 9mg [no lower] for 3-4 weeks and get really stabilised before you restart taper proper.

healthunlocked.com/pmrgcauk...

Linny3 profile image
Linny3 in reply toDorsetLady

Thanks so much for the reply

PMRpro profile image
PMRproAmbassador

The pain is just on one side? Are you sure it is PMR itself or an add-on like myofascial pain syndrome?

Linny3 profile image
Linny3 in reply toPMRpro

I don’t know, except when I take the 17mg it clears out. Anything less and it comes back. Nothing else helps not pain reliever, rubs or message or heat or ice. This is the pain it all started with 6 years ago😟😡

Thanks for your response

PMRnewbie2017 profile image
PMRnewbie2017

My initial thoughts were the same as PMRpro. As I see it that's a huge jump in dose and 17.5mg Pred will mask all sorts of things. Have you tried Paracetamol? It's very underrated as a pain killer especially at the max daily dose of 2tabs every 6 hrs, max 8 in 24 hrs.

Linny3 profile image
Linny3 in reply toPMRnewbie2017

thank you for the reply. I must have forgot to mention that I take 6 five hundred mg tablets of Tylenol daily. I take them for severe back issues due to fractures. They don’t touch this new pain.

This is just so frustrating. I thought after all these years I was finally able to lower my pred significantly . I was doing everything great and was so excited to be down to 7mg.

Though the pain in neck and shoulder is so much better it is still there. Trying to decide when to try and drop to at least 16& 1/2 mg pred.?

ab58sf profile image
ab58sf

I know how discouraging tapering can be. I was at 1 1/2 mgs and doing well. Had 10 pain free days. Then I went to 1 mg and the pain came back with a vengeance.

I am going back up to 2 mgs for a while. It is so wonderful to think you might be in remission, but the stark reality hits. I pray for remission, but we have to keep on to control the pain and disease progression. Have you tried hydroxychloroquine? Might ask your doctor about that. I did OK on it until I took a second dose in error one day and it make heart palpitations. I think that was my fault.

Linny3 profile image
Linny3 in reply toab58sf

thank you for the reply. Yes I have tried that along with three others. Just didn’t work for me.

Not what you're looking for?

You may also like...

My recent journey in decreasing prednisone

Hello Everyone This is my 8th year having pmr. I have used the slow method many times and have...
Linny3 profile image

Stopping prednisone?

68/m, PMR diagnosed 7 moths ago, started prednisone 20-25 mg 7 mths ago, now at 2.5 mg prednisone...

New to PMR and Prednisone

I was diagnosed two weeks ago. Doc put me on 20 mg of pred for 5 days and then reduced it to 10 mg...
Nosslrac profile image

Zero prednisone

I have been on 0 mg pred for 1 week now. And I am feeling good. No pain, and only Occassionally a...
Meg1711b profile image

Actemra and reducing prednisone

Hi Everyone I have had my 5th actemra weekly injection. I reduced my pred. from 15mg to 14&1/2 mg....
Linny3 profile image

Moderation team

SophieMB profile image
SophieMBPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.