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Weaning off of prednisone & pain management
Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:23am | Replies (156)Comment receiving replies
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.
Replies to "Well, my third attempt at tapering didn't end well, same as the first two. I went..."
I crashed and burned countless times at 7 mg of prednisone. After Actemra was tried, I parachuted down to 3 mg and hovered there for a while. After my cortisol level improved, I had a relatively soft landing. I still needed some recovery time after getting off prednisone.
For kidney health, wild lettuce is probably not a good option as it's high in oxalates, not good for kidney health. Some other things like turmeric are also high in oxalates. While we're trying to solve one health problem, we don't want to create others.
I agree that PMR and its complications can get worse after a flare, which is a good reason to try to avoid a flare and keep inflammation under control. When we have a flare the prednisone is increased and the total consumption of it is higher than a slower more cautious reduction under 10mg. Higher total consumption increases the problems, harms and side effects of prednisone. I'm on my second reduction, now with new post-flare complications like Morton's Neuroma pain in the balls of feet affecting walking, and new nodules on the joint of my big toes. Didn't have a problem with feet at all till after the flare.
Good luck to everyone as we try to deal with this all the best way we can.
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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.