Weaning off of prednisone & pain management

@besmith57, I added your question about weaning off prednisone with PMR to this discussion:
- Weaning off of prednisone & pain management https://connect.mayoclinic.org/discussion/weaning-off-of-prednisone-pain-management/

Dealing with dry eyes is not fun. There are many discussions dealing with dry eyes. You may wish to start here:
- How do you deal with dry eyes?
https://connect.mayoclinic.org/discussion/dry-eyes-1/

Thank you for all the PMR links. I'm at 7.5 mg of prednisone now but I'm considering going back to 10mg tomorrow. My pain level today is terrible. This is twice in less than a week where the pain kept me from doing anything. I had to go to the ER for painful, teary eyes a month ago. I saw an ophthalmologist who said I was basically tearing a layer off my retina. I now use drops and ointment at night. I wish Kevzera worked faster. I'm sure my osteopenia is gone now with the prednisone use. I did 2 years of injections of Tylmos (very expensive) to make my bones better which the Tymlos did. Guess I'll see how I feel tomorrow. Thanks, again!

Interesting verbiage for use of the word phrase; "quality of life"? I am 75, diagnosed with CML Leukemia since 2004 and medicated with Imatinib, formerly Gleevec by Novartis, dropped now to 5 days per week due to anemic lacking of red blood cell count. I am well acquainted with this chemo med and how to deal with side effects, so was living a very productive, active working, always busy life style, until a couple of months ago when hit overnight with PMR crippling both shoulders, swelling of hands, wrists, elbows and fingers. Over the past five years or so I have had 3 failed Lumbar, Laminectomy surgeries that constantly reminded me of what a 10 was on pain scale, until a bit more than a year ago, was gifted with an Abbott Spinal Stimulator Implant that essentially remedied the back pain. The CML and Lumbar is a Piece of Cake compared to this PMR issue! Getting to see a Rheumatologist for me is a wish never granted to date. For these reasons, with help from a GPMD I take Prednisone, starting does at 30mg, which eliminated my pain within 3-7 hrs. the first day. I reduced from 30 to 25, 20 to 15, 15 to 12.5mg per day currently but still suffer extreme Lethargic, Energy-less days from the time of wake-up to about 7 P.M. nursing the pain when bad with Tramadol 50-100 mg. I exercise as much as possible on my treadmill and stationary bike, not comparable to what was prior daily habits before PMR. I have discovered that taking my Prednisone at 5 A.M. to the latest time at 6 A.M. is a huge difference for decreasing the lack of energy, along with getting less sleep of only about five hours max. It is too early to tell for me, but it seems the lesser dose of Prednisone is better for me so far? I am aware of self medicating is incorrect, but have no assistance with proper medical advisors, so just do what feels right for my body and mind, in order to return to my busy and productive self and finish some projects. These conversations I have read are helpful and informative. Thanks to everybody for that, along with my sorrow of your discomforts.

I had extreme bouts of pain when weaning off of Prednisone starting at 10 to 7.5 mg. That lasted 3 days. Took 2 Advil and the pain went away within the hour. Then again another waive of pain from 7.5 mg to 5 mg, this time I stopped it after 2 days with one dose of Advil. So at 5 mg they started to wean me by 1 mg. 5 to 4 I had pain a little longer. 4 to 3 I had pain a little longer. Then they switch my regimen from 3 to 2 alternating days, and that went a lot better. Then 2, then 1 mg, and as of next week I hope to be off Prednisone. So the moral of this story is. If you are having pain during your weaning process, it could be because of the Prednisone and not the PMR. The same thing with feeling better when your coming down of Prednisone. It does what it needs to when you need it, but it can cause side affects as your coming down off of it.

Many Thanks, for the light at the end of our tunnel. With me reading, studying and self prescribing, due to the Rheumatology expert (PMA) lacking, I am figuring my own weaning procedure, timing of 1-2 weeks and amount. As mentioned I have gone from the 30mg initial dose, to 25-20-25, now 12.5 started last Saturday anxious to get to 10mg then less. The absolute worst is a feeling of non productive worthless-ness; especially when I have so many projects left to complete. I can barely accomplish 1-2 projects per day, mostly at the late part of day after Prednisone wears down some. My old 78 GM truck is near ready for primer & paint, winter garden to go in, seedlings started and near ready inside, painting of 1 vanity and cabinet, trial run for final tune of 3 new rifles built and much more---All as time is wasted on the "wait for a Doctor Game". I'm glad you are making progress and wish the same for all others.

In 5 years, I was not able to do hardly anything, so I understand the frustration. I've accomplished more in the past 8 days than I have in the last 5 years. As far as the doctors go, I know the game very well. But I believe I also played my cards right. Because I was left for so many years without a diagnosis, I became desperate to find answers. I would make an appointments with multiple Specialists locally, and then made appointments with Specialists at University of Penn Medicine, in Philly. After a short time I would at least get to see a doctor almost every other week. I needed answer. I truly felt like I was dying and I'm not a "dramatic" type of person. Eventually my Rheumatologist collaborated with UPenn on my health care which was great, because treatment happened quickly. Here I am 13 months later and hopefully will be off of Prednisone this week. Also, you may want to ask your doctor what will happen once your weaned off of the Prednisone. If you have no pain, will you need to be put on another med OR will finishing up the Prednisone be the end of your treatment? My first Rheumatologist had me preapproved to go on Kevzara injections, but my new Rheumatologist told me I don't need to take anything. Best wishes and keep us posted on your progress. We are all rooting for you.

Ya' Know; this site is the Best I have discovered for Honest and Realistic, Factual, Personal Experiences! At least I can trust what like-minded people say or offer as opinions, as compared to the lack of or don't care supposed Doctors here in Las Vegas, NV. My Primary Physician is great and tries hard, prescribed the Prednisone after a single visit, symptoms and views all the blood testing; although is out of field of expertise and frustrated by the system with insurance companies. My current Medicare Insurance choice is Intermountain Select Health Care, so far has been the best ever for me as far as coverage, including the $95,853.00 cost for my Abbott Spinal Stimulator installation, but not for this topic at all. Other insurance supplements I check don't cover my Oral Chemo for the CML and have co-pays. My current covers all so far. Pain is no stranger for me, since 1978 starting with a fracture of C7 and 3 months in a Halo, screwed into your skull, still working at my newly opened machine shop with that "Roll-Cage" on-LOL. I refuse the Opioid type drugs, but at one time before the spinal implant took multiple classes and studied Cannabis for pain, without a high, also can tolerate Tramadol twice a day when in a bad way and function well from that point on, many years now. Pain is easy, non-operational shoulders, both at once don't get it-hence Prednisone.
With my brief experience regarding this topic; I would not wish on any person, other than a Politician lately.
Many Thanks to Everybody for all the sharing of facts and info-worth an unaffordable fortune.

Please Be Careful for use of Advil or any/all NSAIDs. Check your sources and notice the severe side effects of Gut Bleeding and Erosions when combining NSAIDs with Prednisone. Stick to Acetaminophen, not nearly as good, but won't kill your gut---just your liver if you exceed doses. Turmeric & Ginger helps with the inflammations . Everything in moderation.

Thank you for the info. I had heard about the gut bleeding issue, so I contacted my Rheumatologist and my Gastroenterologist. They said it was okay to take but minimize my use. I only had to take it for 1 or 2 days and only one dose each day. Luckily it worked like a charm!

Yes .everything I have read says Tylenol much safer than Advil