Prednisone tapering: How did you do it pain free?

@kjoed53 ....I taper to a tolerable level which is 3 or less.......if the pain goes above 3 when awaking in the morning I increase by .5 mg. for three days and start the taper again. I had some shoulder issues before PMR but use them as my barometer when to taper. I also split my dose which is now 6 mg. , 4 mg. with morning meal and 2 mg. with evening meal. Very important to have plenty of food in the stomach when taking Prednisone. Also do not take antiacids with prednisone and separate them by 2 hours or more or it will weaken the medication. A PPI will help with protecting your stomach but there is also issues with taking them long term because this will not let you properly digest all of your food due to decreased stomach acids. These are details I had to learn on my own because my Rummy did not take the time to go over important details, which by the way will be different for each person.

@jabrown0407
There's probably more unknowns than knowns with PMR. I think it's an umbrella diagnosis that involves multiple similar but different disorders that can't be separated because there is no singular test to diagnose any of them. If it's inflammation with an unknown cause and reacts positively to prednisone then it's labeled PMR, even though we all present differently, react differently and heal differently.

@kjoed53 and all... Yes, absolutely true, especially with auto-immune diseases. They have stumped the medical field for decades and only now appear to have more definitive diagnostic symptoms and better treatments.

My research and rheumatologist at Mayo treat PMR if you have both shoulders and both hips causing you extreme pain... I was hit suddenly with severe pain in both sides of only the hips and shoulders, to the point I couldn't turn over in bed at all, had difficulty getting out of bed or sitting up. It was severe. Immobilizing. Nothing touched it until I took Prednisone, I think I began at 20 mg at that point. perhaps 30mg. Don't remember. After a 2nd bout of Covid with Covid pneumonia and IV Remvisidere. Then. shortly, I was hit with GCA and put on Methotrexate, which worked immediately to calm the GCA symptoms. PMR symptoms responded well to Prednisone and tapered to 10mg daily for over a year.

Then, had the Oxympic reaction that sent my body into orbit in pain, weakness, etc. damaging my muscles and leading me to the diabetic even with coma level glucose levels.

That led to weeks of hospital, hospital rehab, leg/hip paralysis and 20mg prednisone to relieve the paralysis some. It took weeks of work with PT in hospital rehab to be able to walk again. I was using a wheelchair in the NH rehab for several weeks. What a journey that was... very long, very challenging, very debilitating. I attribute this all to Oxympic damage to my muscles and a reaction from my auto-immune system. I don't think these issues will ever be resolved. I will never have the muscle strength I need to function at the pre - Oxympic level
which was still limited mobility.

Tapering Prednisone is vital for me as I have multiple issues that Prednisone exacerbates... Vasculitis, aortic aneurysm and other heart issues, brain issues caused by this miracle drug, etc. So, I will and am tapering, but it must be extremely slow and methodical, watching carefully for reactions and responding asap. Several mornings I was completely paralyzed,whole body except my eyes and mouth... Robaxin 750 relaxes the muscles and allows them to begin to respond to my instructions and movement begins slowly, with tremors and weakness for hours to days following.

As the Prednisone is decreased below 15, I'm now at 14mg, these symptoms begin returning with weakness, tremors, pain the first it appear. I'm 79 and live alone. This is not going to continue. So, I will taper slowly, but it appears at this point 14 mg is the bottom for now. I'm holding there thankful to be down at least 6 mg since last May! Brain fog is less, movement is still ok, weakness is still worse and all kinds of pain is hitting me, but it's tolerable now using Tylenol, Kenalog cream, Xanax...

No, there is not a substitute for Prednisone with PMR, Sarcoid, my paralysis and other illnesses... It is a miracle drug and a horrid debilitating drug. We must learn how to deal with it as best we can. I don't expect to ever taper with no increased pain. I accept the pain up to a point in order to get down as low as functionally works.

Blessings to you all with this crazy journey... Elizabeth

@ess77
Do not be so quick to dismiss your muscle recovery. Medicine has advanced in leaps and bounds during our lifetime and it's sometimes akin to the proverbial snowball rolling downhill. I also believe in the power of the body and mind to heal itself if given enough time. I don't know much about it, but is creatine something to discuss with your doctor? Some people swear by it. I've always enjoyed the challenge of proving someone wrong who doubts my ability to accomplish something. Prove your doctors wrong if they are telling you that you can't return to your former self. From what you wrote, you strike me as a fighter, so get to it...lol

I've been decreasing by 1mg every 10 days. Started at 25mg, got to 14mg, but pain returned. Not as bad as beginning, but its hindering my daily routines again. Went back to 14.5mg. Hoping that helps, but after 2nd day there, not much better. Im bummed because it was going so well. I'm wondering also about a biologic like kevzara to help get off prednisone.

@kjoed53 and all... Yes, I am indeed a fighter. Doctors are not telling me I won't improve. They are working to determine the underlying causes of the crazy things happening. But, to date, after seeing a Neuromuscular Neurologist, who even did DNA testing, having MRI, CAT scans, blood-work up the yang-yang, EMG, and more, there is no definitive answer yet to what's causing the muscle issues. I know. It's the Oxymic sending wrong signals to my muscles telling them not to work as instructed. And, combine that with my auto-immune diseases and wonky system, the nerve signals get confused and my muscles don't function properly. So, it's brain, nerves, muscles, all in one. That's my diagnosis and I believe it makes sense.

I don't take Creatine as the hormone that reduces sodium from the blood system is not working, so I have too much sodium in my blood, causing severe fluid retention, a side effect of creatine supplementation. I fight edema daily and for decades had dangerously low Potassium levels, due to this imbalance. I now take several Spirnolactone tablets daily to counter that issue, and diuretics as needed when I gain 3+ pounds overnight... often gain 5-9 pounds of fluid overnight...

I am a supplement user... Magnesium, B-Comlex, B12, D3, Zinc, Potassium, eye supplement, Folate, Ferritin- chronic low Ferritin - Pernicious Anemia, D-Mannose, Probulin Probiotic - critical care, Centrum Silver for women, and other... They are keeping my balanced and I'm constantly researching for others I need. But, very cautious to do my research!

I worked decades to get to this place with my medical care. I fought hundreds of battles and wars along the way to be heard. To be taken seriously. To find the right doctor to hear me, to work with me and understand my entire body. What a tough job this was all these years. Especially for women my age. We were told it was emotional. It was psychosymatic, given Valium, dismissed. never listened to what we said... Long, hard journey, at least for me with the medical field.

I am enormously thankful for Mayo Clinic doctors, the system that is built on putting the patient first. On caring. On listening. On sharing information. In 1986, the first year Mayo Jacksonville opened, I was diagnosed with Sarcoid in my lungs. I was quite ill. Unable to function. In pain. I was diagnosed with a lung biopsy, and given the results of the test in the recovery room! Not a month later by a phone call! Sarcoid... treated with 80 mg Prednisone for 6 months. Thus, my journey began.

Thank you for the advice and encouragement. I am at a good place of acceptance. Not giving in to a disease. Rather, acceptance that this is in fact happening, I will fight like hell to get the care and assistance I need to be better, but I will also accept the fact it is happening. And, there are times things do not improve.

I do everything and more to make my decisions and follow my path to reverse the symptoms. But, there are times I hit a wall and can only accept partial improvement. That's where I am with this muscle and Prednisone junk. I accept partial improvement. 14mg Prednisone is a good spot for me to hold at this moment. I'll deal with that. Not ideal, but the best we can do at this point.

Blessings as you walk this wild and crazy medical journey... Elizabeth

Thank you for sharing. I see my rheumatologist next week and im going to ask about it. How are the side effects from kevzara?

Thank you for sharing. I see my rheumatologist next week and im going to ask about it. How are the side effects from kevzara?