Hello everyone.....I hope you are finding some relief and making some progress with your PMR/GCA challenge. This site has been a big help and thank you to everyone for sharing their experience.
I was recently diagnosed with PMR (2 weeks ago) and immediately put on 20 mg Pred per day(5 x 4). I felt immediate relief from all the typical inflammatory areas that everyone seems to have. Predisone has really helped my over the last 2 weeks live almost normally. My question is do most people on here experience the same result? It is almost like I am fully recovered even though I know I am not based on the journey's most have experienced. It seems like most of the challenges happen when the tapering of prednisone begins. I am fortunate to not be on any other medication and don't have any health issues for my age. Has anyone else experienced this in the early stages of PMR? I want very much to be optimistic about what's ahead but want to be just a realistic as well.
Thank you and have a great day!
DesertLife10
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DesertLife10
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..many feel as you do early days (I certainly did with GCA) but as you say when tapering begins it can be more difficult than some doctors seem to think -and one size doesn’t suit all.
Hello, the three words I’d choose are Optimism, Patience and Open mind. The P word is the one people struggle with the most. Yes, Pred is often the miracle after feeling terrible, for a long time for some so your tale is happily a common one. However, it is usually the lack of P that reduces the first O because people expect to pick up where they left off before PMR as they ride the Pred wave of relief. If you are a person who doesn’t get a lot of the negative side effects the Pred can give you an extra buzz. Now is not the time to get those jobs done that mocked you before. These are times when you invite your body to do things, not instruct it.
The day is yet young for side effects that can accumulate too so keep an Open mind and give your body lots of rest. Now it doesn’t have the inflammation to deal with, it still has to get its immune system out of its fight or flight mode that is causing it to attack its own ship. Once you start to withdraw Pred you may find there’s a kickback as the body has to deal with a new biochemical landscape. That can upset the optimism but should be short lived. Reducing too fast is the biggest blow to one’s get back to normal plan and this is where the Open mind is essential because the whole thing is made harder when Optimism spawns unrealistic expectations. What is realistic? Ah well, one has to work that one out because we’re all different and doctors often don’t get that part. All that is perhaps no help whatsoever if you want certainties.
Really that is how you SHOULD feel when you start pred - a very high level of symptom relief. You have started with a dose that is plenty to deal with the inflammation and then you taper slowly to find the lowest dose that gives the same level of symptom relief as that starting dose did.
The pred has cured nothing - it is mopping up the inflammation and that relieves the symptoms. It is not a licence to go back to the same level of activity that you had pre-PMR - it is a life-changing illness and demands respect.
Steroids are a wonder drug and most people have a magical effect when first taking them. Just remember you have a life changing illness and PMR can come back and bite you if you don’t respect the illness!!
A degree of realism is needed too. Doctors live in the world where they expect the patient to be off Prednisolone in 12 months. I’m 3 years in and still slowly-slowly tapering. Even though I’m mostly 1.75mg and less 2mg I can ‘feel’ my adrenals are not fully capable. The transitions at lower dosage can be challenging, and I know from others on here that if you rush to zero there’s danger you have to go back to a higher dose.
👍 Yes, being optimistic is really helpful. I am sorry I am just answering now. I will be more diligent in the future!.
I am almost 2 years in my PMR recovery journey and at 6mg now ( and have been for a few months). I have had both CGA and PMR. For me, the fast tapering did not work--- the slow method has--- this method was advocated by my GP, Cardiologist and wholistic health Doctor.
With my PMR, my doctor put me on 15mg of Prednisone and my symptoms went away after 5 weeks. I tapered to 12.5 after my ESR was 10 and my CRP was 3 and then waited about 3 weeks and had my blood tests again. Sometimes after a taper these inflamation markers would go slightly up--- I so waited 2 more weeks, got tested again and my markers usually would go down, in this case, they went down to10 and 3 so I felt safe to taper to 10 mg.
I had a very difficult taper from 12.5 mg. to 10 mg. with severe headaches. After that I have been tapering 1 mg at a time: to 11, 10, 9, ... This was my own personal challenge, you may be able to taper by 2 1/2 mg until you get close to 6 mg depending on your symptoms and test results.
My tapering periods changed every month or so because of vaccines, Covid, travel and other symptoms. I keep a record of my symptoms and test results, and Pred level every time I taper. Being able to review this information has been so helpful to inform furthering tapers with the guidance from my Rheumatologist.
I have not had a flare since I monitor both my ESR and CRP levels and my symptoms before I make a taper.
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Hello Everyone
