Weaning off of prednisone & pain management

I am so sorry that is so discouraging. The dead slow tapering plan is what I’ve been doing. I’m 2.5 years into this journey. I can get down to 2.5 mg of prednisone and it is tolerable. When I drop to 2 mg the pain is so bad it’s hard to walk. Rheumatologist is recommending Kevzara. After reading the side effects Im totally terrified. I feel better staying on 2.5 mg and hoping one day it will finally happen. Good luck on your journey. I wish you the best!!

Thank you for your well wishes. I have had no side effects from the Kevzara that I know of. I think that's what helped me taper. I hope this works so I can get off these meds asap. Good luck with your tapering. PMR is an awful disease.

Had I listened to the folks that promote dead slow I would still be on prednisone. They encouraged me to stay on Prednisone for the rest of my life rather than try a biologic. It was a dilemma for me because my rheumatologist was saying that taking Prednisone for the rest of my life would be a bad outcome. I'm glad I listened to my rheumatologist.

There are possible side effects from any biologic but I think being "totally terrified" is unwarranted. I haven't had any side effects from Actemra and it works well for me.

You won't know if Kevzara will work for you unless you try it. However, my rheumatologist said if I could maintain my Prednisone dose at 3 mg or less, a biologic might not be needed.

The side effects from Prednisone were real to me. The Prednisone side effects were not that easy to manage without additional medications. I had higher blood pressure, higher cholesterol levels. higher glucose levels and higher intraocular pressures to name just a few.

I was on 10 additional medications which were treating Prednisone side effects. All those medications also had possible side effects and added to the Prednisone side effects. Fortunately, I was able to discontinue all of those additional medications after I was able to taper off Prednisone.

I have been on Actemra for 5 years. The number of medical concerns I have are less compared to the 12 years I was on Prednisone. I wasn't so sure I would have lived 5 more years had a stayed on Prednisone.

It is a personal decision and I hope dead slow works for you.

Thank you so much for your reply! I appreciate your journey and I am so glad it worked out for you! As I am only on 2.5 mg and I can maintain that without feeling awful I am very hesitant to add yet another drug. You’re right at the higher doses it would be critical to consider other options. Prednisone is no joke and the side effects are awful. I want to be done with it. Having so many of the side effects from prednisone makes me Leary of any drugs at this point! But it is a double edged sword because I couldn’t walk without prednisone. Thank you again for your very thought out response. Much appreciated.

Is your Kevzara covered by insurance? How long have you been on it? Any issues with immune deficiencies? Sorry I went online to read about it but actually talking with someone on it is very helpful! Thank you!

Kevzara is a miracle for me. It works better than Prednisone on my PMR. (Kevzara targets a different inflammation pathway and that seems to me predominant in my case.) And of course, no side effects that I notice and my labs are robust and strong. As soon as I can get off Prednisone and stay on Kevzara, I'll do it. I'm down to 5mg of Prednisone now.

I recommend Kevzara without hesitation.

Medicare and my insurance cover it. My cost is $77/month.

@pmrsuzie
I don’t use voltaran either. Have you tried Aspercreme original formula? It works for me.
Does your husband take an oral analgesic for his pain, something like Tylenol Arthritis strength?

Well, my third attempt at tapering didn't end well, same as the first two. I went by my doctor's instructions of tapering 1 mg every two weeks but after reading a lot of posts and comments here, I feel that may be too fast. Every time I get down to 6, I crash and burn with a huge flare. Ugh.

When this happened on my first taper, my then-rheumatologist had me go all the way up to 20 mg to reduce inflammation. My initial dose was 10 mg which I've learned is considered a low starting dosage but it worked wonderfully for about a year until I started trying to taper. Same thing on the second taper attempt, had to go up to 20 mg for several weeks to get the flare under control. Now here I am post Taper #3, back at 20 trying to get my pain level down to where I can function again and start yet another taper, much slower this time.

My rheumie moved to another state last Spring and the only other alternative can't see me until after the first of the year, so I'm winging it. Before he moved, my ex-rheumie discussed starting me on Kevzara but my PCP is reluctant to prescribe it. Not sure why. At any rate, I'm sort of flying by the seat of my pants and trying to take care of myself as best I can for now. The thing is that it seems to me my PMR is getting worse every time I try to taper. Tylenol does almost nothing for the pain, maybe because there's no anti-inflammatory, and I have Stage 3A CKD so don't need to be taking NSAIDs and anyway, have read in here and other places recently that they're contraindicated for Prednisone.

I'm going to try natural anti-inflammatories and plants such as Wild Lettuce. If anyone has any recommendations for natural pain remedies, I'd love to hear about them.

I am sorry for all you are going through. Don't give up. Remember 3's the charm! So, you are back up to 20 mg. on the Prednisone. This is what I found worked for me.

At 20 mg I was tapered off by 2.5 mg every month (that took 5 months). When I went from 10 mg to 7.5 mg, I had a lot of pain, so I did take one dose of 2 Advil with a meal which my Rheumatologist said was okay. That knocked it right out. If it is not okay for you, look into the Mediterranean Diet to ease some of the pain. You may need to stay on that dose just a little longer. Then when I went from 7.5 mg to 5 mg the pain came back. Again I took one dose of 2 Advil with a meal, but it took a little longer to resolve, so I was patient, ate right, and eventually by body adjusted. Because I had pain the last two rounds, I then was weaned down really slow from 5 mg. I'm not sure if the weaning process from 20 mgs to 5 mg by 2.5 mg a month is going to be too much too soon for you, but see how you feel. This is what my weaning schedule looked like:

Prednisone
20 mg to 17.5 mg
17.5 mg to 15 mg
15 mg to 12.5 mg
12.5 mg to 10 mg
10 mg to 7.5 mg - Started having pain, took 1 dose of Advil with a meal (you may choose to start tapering off by 1 mg once you hit 10 mg)
7.5 mg to 5 mg - Starting having pain, took 1 dose of Advil with a meal
5 mg to 4 mg
4 mg and 3 mg alternating days
3 mg to 2 mg alternating days
2 mg to 1 mg alternating days
1 mg to none (I have been off the Prednisone for the past two weeks and have minimal pain)
*(it's also okay to split the pills in half and do it even slower; whatever works for you)

Also, check this out on Cleveland Clinic website. They talk about going on an anti-inflammatory diet, https://health.clevelandclinic.org/anti-inflammatory-diet. My Rheumatologist recommended the Mediterranean Diet which is a really healthy way to eat. Natural anti-inflammatory food is really good for you, but be careful with supplements. Even Turmeric is questionable, although has many health benefits. The above website also gives you a chart of foods that cause inflammation and those that help reduce inflammation. Let me know how you do. If I come across anything else, I will let you know. I know it's really tough not having a Rheumatologist, so I hope this is of some help to you. In March my Rheumatologist's Office called me to tell me that they were not going to be covered by my insurance any more. So I started looking for a new Rheumatolgist. I original Rheumatologist has me pre-approved to go on Kevzara. My new Rheumatolgist told me that there was no reason for me to be put on any other meds. I'm very, very happy with my new Rheumatolgist. He just makes total sense of things. So sometimes change is a good thing.

My successful taper went/is going like this:
30 for one month
30 to 10 @ 5 per two weeks
SED was then normal.
10 to 5 @ 1 per month
5 to present 2.5 @ 0.5 per month.
In this last phase, I do have some minor pain issues for a few days after a drop. Minor. Not PMR. Otherwise, no problems.
Although we probably respond differently, it does seem that those of you having more severe issues are inevitably tapering faster or in larger dose changes when you get down to 10 and below.
Until PMR is definitely in remission, you cannot consider a taper.
Wishing everyone well.