Today was my appointment with my GP. We discussed dosing , blood testing , and tapering. She indicated that I should stay on the 15mg dose for atleast Six months and if the blood test comes back normal I could start a 1 mg per month taper and monitor pain and quality of life accordingly. She told me she was treating a women that was on prednisone for 3 yrs already and was finally down to 2mg so I should be aware that this could take years to resolve if ever. Believe it or not , that was comforting to know that she understood and had experience treating this disease . I did mention this support group and how much you helped me with my questions and dosing issues. She was very much in favor or support groups and their valuable experience with PMR. So it looks like we are all on the same page now! All I have to do now is stop eating so much. I haven’t gained much weight yet (2 lbs in 6 weeks) but I would like to keep it that way.
GP’s plan for my PMR: Today was my appointment... - PMRGCAuk
GP’s plan for my PMR
Well done for getting to grips with your PMR and accepting the role it will now play in your life. Your doctor has departed from the usual script in suggesting you remain at 15mg for six months before any attempt to taper but maybe she has learned something from her other patient.
Of course you still have to play your part in pacing yourself and not expecting your body to be able to perform as it has before. The “Duracell bunny” effect at 15mg will make you feel pretty good and it’s easy to think you are invincible and can carry on life unchanged, we all do until PMR gives us a sharp reminder!
Thank you for thoughts and perspective and hoping your journey back to a normal will continue on.
You can eat lots providing it isn't carbs!!! In fact, cutting carbs usually also cut the hunger pangs that drive you to eat more.
She sounds worth hanging on to since she isn't going to rush you off pred and that is good. However, 6 months at 15mg is a bit excessive, and for most people with PMR it is unnecessary. An excellent approach is the Quick and Kirwan approach to tapering where they get the patient to 10mg and stay at 10mg for a year before continuing the taper.
I took 15 mg for almost 7 months. When I first saw the rheumatologist, he was vey upset I had been in such a high dose for so long. He immediately ordered tapering. I decreased by 2.5 mg every two weeks and then by 1 mg bi-monthly. I'm now down to 4 mg. The more I decrease, the more symptoms of inflammation increase and my quality of life declines. My inflammation markers are up, my sedimentation rate is at 38.
Then he has now tapered too fast and too far and you aren't on enough pred. He needs to come into the real world of PMR. Many patients start at 20mg and would take 2 or 3 months to get to 15mg and another month there. It wasn't that excessive.
If he thinks 7 months at 15mg is a long time at a high dose, many patients with GCA are WAY above that for longer, a starting dose of 60mg is not unusual. And I, with "just" PMR, have been at above 10mg for probably at least 11 of the last 16 years. During Covid and my husband's illness I was above 15mg for the best part of 2 years just to be able to function.
Not sure where you live or how long you have had PMR [nothing on profile] .. but think you need a new Rheumy, he doesn’t seem to understand your illness at all. If it’s still going strong, which it sounds as if it is… you are being told to do exactly the wrong thing.
You need more Pred [even if only temporarily] to get your PMR back under control.
Jeepers. My rheumy tried that tapering regime as well. Sent me into a flare. Way too fast. Some of us can only handle 1mg per month and even then it's difficult. Right now I'm trying to drop .5 biweekly as GP is adamant I get off the pred. So I'm currently at 7.0 per night having just dropped from 7.5. She's taking her cues from the rheumy, who is no longer in the picture.
Agree with Pro. Cutting out any foods containing added sugar was enough to get the hunger under control within a few days for me. So watch your carbs (especially the white starchy stuff) and try to space your meals evenly so that you don't get too hungry in between meals. I found the diabetes prevention diet helpful, as it focusses on helping to keep you full for longer. You may need to increase your protein to feel more satisfied after meals, without increasing saturated fat, to avoid unwanted extra calories. Choose foods with low glycaemic index and make sure that any carbs that you do have is accompanied by vegetables and fibre, as this will help to slow down absorption and reduce the blood sugar spikes that are often followed by more hunger.
Thank you for your reply. I totally agree that diet is going to be a big factor in this PMR treatment. I do struggle with Carbs and sugars lately. I’ve been trying to substitute raw honey and Greek yogurt for sugar cravings and it seems to work for the most part. I should probably monitor my glucose levels to see if I’m getting close to pre diabetes levels. Last thing I need now is diabetes.
Honey is sugar by another name - shoots into the system even faster than sugar!
Thank you, I was thinking that if I had a little sugar in my diet it should be raw pure organic honey from what is said about it in herbal health stores. According to them, benefits out weight the risks. Maybe more research is needed. 🤔
I'm sure they do - they want to sell it after all!!! The best thing to do is learn to live with things being less sweet - just reduce the amount slowly over time and after getting to zero added sugar it will take about 6 weeks before you will find anything sweetened inedible once all your taste buds have been renewed!
Sounds like your GP is a keeper. Wish mine was as amicable to listening.
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