Tapering off of Prednisone
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.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
I am certainly not an expert although I've been down to 7 with a relapse a couple of times, and as high as 60 once. My doctor is trying to get me down to 2 or 3 mg, but I just don't make it down that far. He said that I'll likely always have to be on a low dose. He's concerned about long term use because of bone weakness. I have lost a bit of bone, so I'm on calcium, Vit. D, and I'm doing more weight bearing exercises. You seem to be tolerating it well so that's great for you. There is a medication that I could take, but I don't want any more meds. Pred is a miracle drug, and we do feel much better on it. No doubt. The good part for me is that I had very good bone strength for a woman my age (84), so the small amount of bone loss wasn't huge. I would assume that you are doing remarkably well with 2.5 mg. Good for you.
I have labs about every 3 months. I guess that is the best way for them to determine what the inflammation level is, and it's a useful tool. They do the ESL and the CRP and it's important info for the docs to review what's going on and I also have to have labs for the Actemra that I take. I'm not a fatalist, but I am (84) and still pretty active. I sew and craft, and do some small amount of gardening with my husband, so I don't worry too much about what is going to happen to me. I have a great life. I try to see the good around me, and let the rest go. Except when I overthink this stuff.
Thank you for answering my post. My rheumatologist predicted that I would probably do well with cutting back until I reach the 5mg. level. He said a lot of people begin to experience a recurrence at that point, so I am hoping I can get past that mark without a flare. During the tapering process, I have tried to concentrate on foods and a few supplements known to have anti-inflammatory properties. I am taking four fish oil capsules daily plus 400 mgs. of turmeric extract. I also try to eat some strawberries and blueberries daily. I'm not sure whether these remedies have helped or not, but since I am feeling better, I plan to keep on using them. I am 75 and this is my second bout of PMR. The first occurred thirteen years ago and resolved completely inside of six months. I hope you can eventually get completely off the drugs and be free of pain. Please keep us updated on how you are doing.
I appreciate your post. Thank you. I do about the same thing. The anti-inflammatory foods, and s few supplements. I think healthy eating is always good. I work with a dietician, and have foods that have anti-inflammatory properties. If you got through it once I think you will do well. sounds like you are on the right track. I also took a Course on Living With Chronic Pain, and that seemed to be really beneficial. I think I'm doing better since I took the course.
Interesting ... my PMR began just before vaccinations ... still seems that super round of stress brought on my PMR ... recent retirement, quit heating the home with a wood stove, new HVAC heat pump system, Washington D C political system in turmoil, covid lockdown with nothing to do, nowhere to go. Too many hours on the couch watching news, no physical activity.
Cgent, I wonder if you'd like to join the virtual walking group. It's a great group of people here on Mayo Clinic Connect that started during the COVID lockdown to help keep people connect and motivated to keep moving, no matter how much or how little. Check it out. All welcome.
- Let’s Go Walking! Join me for a virtual walking support group https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/
Yoga counts too. 🙂
Hi, I am new to this group and looking for some information regarding PMR and tapering off of Prednisone. I have been on it since 12/25/20, started at 20 tapered down and went from 10-7.5 and symptoms came back. Put back on 10 for 2 weeks and then 9 for a month and I currently just started 8 and noticed the symptoms starting to come back. I don’t want to do Methatrexate. Opinions?
Hello @dawn0723, Welcome to Connect. You will notice that we have merged your discussion into an existing discussion - Tapering off of Prednisone so that you can meet other members with PMR like @lizzier, @kmeikle1, @maddman and others who have experience with tapering off of prednisone.
I've had 2 occurrences of PMR and started both at 20 mg dosage. The first one took me 3 and half years to taper off and the second time took me 1 and half years. I learned to keep a daily pain/aches log along with the amount of prednisone I was taking so that I could refer back when needed. Originally I started tapering down every week but later changed to every two weeks at small doses. The first time when it took 3+ years to taper off, I went back and forth between 1 mg and 1/2 mg the last 6 months until I was finally able to taper off with only minor aches when I got up in the morning. The second time around with PMR I made some lifestyle changes which I think made it easier to taper off. I exercised more and ate a little healthier focusing on low inflammatory foods.
This might help some - What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683
Have you discussed any tapering schedules or tips with your rheumatologist?
Hi John. Yes, she is monitoring my taper and that is why she took me back
up to 10 for the two weeks and then down by 1 each month after that. I am
starting to feel the aches and pains in the morning again, although minor
at the moment, so I guess that we will have to see what happens. Thanks so
much for reaching out. It really helps.
I just started Methatrexate last week. Today was my second time taking it. I have not had any side affects at all. The reason I decided to take it, 10 MG once a week, is because I could only get down to 8 MG of prednisone for a few days before a major flare up. The steroids are far worst than the methatrexate according to all the research I have done. It is scary when you read all the "possible" side affects for sure...they have to include them with any drug and most all have scary side affects. I will you well, and I will let you know how I make out on this plan. I should say that I have been on steroids for almost a year.