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Thu, Aug 13 11:13am · Carpal tunnel symptoms and PMR: What choices do I have? in Polymyalgia Rheumatica (PMR)

John and Dawn, thank you for your emails. Yes, I do want to stay off Prednisone if possible. A lot of work to taper all the way to zero and don’t want to go backward. I’ve had some side effects (thin skin, weight gain, etc.). And my rheumatologist wants me to stay off if possible. I went to hand specialist this morning, who did diagnose CTS after doing a number of neurological tests. He gave me a cortisone shot (more steroids!) and said brace it at night and give it 6-8 weeks. So we’ll see.

Wed, Aug 12 10:20am · Carpal tunnel symptoms and PMR: What choices do I have? in Polymyalgia Rheumatica (PMR)

I had reduced Prednisone from 40mg to 3 before I started to get some numbness in my right (dominant) hand. I thought perhaps I cut off circulation while sleeping, but as I decreased the Prednisone to zero the hand got worse. My rheumatologist urged me to stay off Prednisone if possible and see a hand specialist, which I am doing tomorrow. In the meantime, I have discovered that 2 1/2 Mg knocks out the pain. So now I have to choose whether to stay on Prednisone and manage the pain, or treat the CPS with surgery or other modality. I’m semi-retired and do nothing repetitive that could cause CPS except perhaps golf, which I have played 50 years with no CPS. Anyone else faced this dilemma?

Wed, Aug 12 9:57am · PMR coming back? in Polymyalgia Rheumatica (PMR)

I agree with John that you should try 2-3 mg. You can go to 5 if you don’t get relief, but the best rule of thumb is to take the minimum amount that is necessary to eliminate your pain. With long term success at 1 mg until now, you may find that doubling it is enough.

Fri, Jul 31 10:02pm · Polymyalgia Rheumatica (PMR): Meet others & Share Your Story in Polymyalgia Rheumatica (PMR)

Welcome to the community. Always good to hear of new treatments being tried. Prednisone obviously has many side effects but it’s been the gold standard for PMR pain. Naltrexone is an opiate antagonist, meaning it lessens the effect and desire of taking an opiate. Curious as to how it affects PMR pain, which is thought to be primarily vascular in nature. Has it worked well for you? Better than prednisone?

Sat, Jul 11 11:48am · PMR and the new Shingles vaccine in Polymyalgia Rheumatica (PMR)

Dr. Tim, a few thoughts from a similar PMR sufferer: I just turned 72 and like you, continue to walk and play golf quite a bit (I’m
In Phoenix). The key for taking Prednisone is to NOT have a preset tapering schedule. The disease sets the schedule. Your goal is to take the least amount that fully voids all of your PMR related pain. We are all different and cannot predict in advance when to taper; rather taper slowly when you are feeling good and see if it works. You want to avoid flares if possible. No one wants to be on Prednisone, but it sure beats PMR pain, so go slow. On the positive side, no one wants PMR either, but it sure beats most other autoimmune diseases so in that sense we can count our blessings!

Wed, Jun 24 10:15am · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Kmeikle1, in reading this message chain one can see the vagaries of PMR. It is certainly possible to have tendinitis or muscle pain on one side, but that is usually caused by overuse. In fact, many people have such symptoms as it seems to be easier to injure tendons and muscles while on higher dosages of Prednisone and it takes longer to recover. Such pain in an indirect result of PMR however. Classic PMR pain is almost always bilateral although it doesn’t have to be equal. In other words, if one thigh hurts to 8/10, usually the other also hurts, but can be 1/10 or any other number. No pain on the other side would be rare for PMR, but remember everyone is different and there are exceptions for every rule. You do NOT want to try to work through PMR pain. Usually that makes things worse. Prednisone use is not fun, but it beats PMR pain, so you should take the smallest dose that controls the pain. Tapering is really individualized and it can take years (some people are on it for life). Some doctors keep patients on a low dose permanently to avoid flares, so they don’t yo-yo. We have a tendency to rush the taper too much sometimes, and the very slow taper seems to provide more long term success to patients.

Sun, Jun 14 4:52pm · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

As to bilateral pain, I do think it is almost always bilateral. But NOT always. Certainly one can get pain worse on one side or the other, but usually there is some pain bilaterally. It is hard to differentiate at times from overuse injuries as all of us struggle to do what we can and sometimes overdo it. While on Pred, injuries take longer to heal, so it’s hard to know if it is caused by PMR or is something else indirectly related to work stress or exercise.
About tapering, everyone is different but more people report success with a very slow taper, thereby avoiding flares. When we start, we don’t know our threshold so tapering can go rather quickly. In other words, if you are newly diagnosed, your doctor may prescribe 20mg a day to start, even though you really could get by on 7 (which of course you and your doctor can’t know). So you do well, cut to 15, and do well, etc., down to 7. When you cut from 7 to 6, you may flare, so you have to go back to 7 and slow the taper. (Actually many people do have a problem tapering when in the range of 6-8 mg because that is the level of cortisol normally produced by functioning adrenal glands. They “shut down” when you take more Pred, and hopefully “awake” when you start dipping below 7 mg).
John is right that many of us can be dependent upon Pred for years, or even for life. Everyone is different and we can only speak in terms of generalities.

Thu, Jun 11 12:41pm · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

In reading this thread of reports, it dawned on me that it might be good to restate some of the “rules” for dealing with PMR. I put that in quotation marks BECAUSE RULE NO.1 IS THAT THERE ARE NO RULES THAT APPLY TO ALL PMR CASES. Everyone is different, but there are similarities that I have learned in my 2 years of dealing with, and researching PMR. I am not a doctor, but will share what I have learned from this forum and another larger forum in the UK.
RULE 2. Blood tests don’t always correlate with clinical symptoms. I have never had any abnormal blood tests, certainly not a hint of inflammation. That’s not unusual. Sometimes PMR will produce markers (sedimentation rate or other indication of inflammation), but up to 20% of patients never have any. A PMR diagnosis cannot be made on the basis of blood tests alone. Period.
RULE 3. PRM pain is most often in the shoulders and hips, but can appear in many other places. The key is that it is almost always bilateral, that is on both sides of your body at the same time. An injury or arthritis usually will be on one side or the other.
RULE 4. The best indication of PMR is an almost immediate relief from Prednisone (can be within an hour or up to a couple of days). Prednisone alone will not affect or cure arthritic pain or an injured muscle.
RULE 5. The disease sets the rules of tapering. Every case is different, especially in response to medication. You cannot “preset” a tapering schedule from a book. I began on 40 mg of Prednisone, a friend on 50. The Europeans do not recommend anything over 30 unless you have GCA. The point is to knock out the pain and then taper SLOWLY until it returns. I went a year in gradual taper until I hit a relapse at 3 mg. Bumped back up to 10, now am back to 2 mg and am doing well. I am lucky. Many of us never get off Pred, and many require years. It does appear that the ones with the most success taper very slowly and deal with the effects of Pred rather that the pain of PMR. Dropping by half a mg once you are inside ten mg per day should be considered. Precipitous drops from, say 10 to 5, often do not work. Again the goal is to take the lowest dose that controls the disease.
RULE 6. PMR is not well known to many doctors. It’s not rare, but unless you’re in the hands of a good rheumatologist your doctor may be unfamiliar with all of the variables involved with PMR. (The Mayo website is a good place for them to start).

I hope this is helpful to readers. I can supply a link to a website dealing with “slow tapering” if anyone wants it. See healthunlocked.com/Pmrgcauk or steroidtaper.azurewebsites or steroidtaper.com.