Still confused about tapering

Posted by michcan1 @michcan1, Nov 17 11:36am

Hi there, I was diagnosed with PMR about 4 months ago ... my rheumatologist gave me a "schedule" for tapering but I haven't been able to follow it because my symptoms return if I do. I understand tapering is variable but my question is this: How do I know when to go down in dose? Should I be completely symptom free before going down to next dose or 80% or 90% symptom free? Or 50%? And if I go down and symptoms worsen should I wait at that lower dose for a few days and hope the symptoms will settle or do I need to go back up? (I am on Prednisone only and currently 15mg daily and can't seem to go lower than that. I started at 20mg and was about 95% symptom free on my starting dose).

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@sister2

I am new to this support group. Can you direct me to the location of the information you posted?

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Hi @sister2, I believe this is the discussion started by @dadcue that you are looking for...

-- Joint Clinical Guidelines for Prednisone Induced Adrenal Insufficiency:
https://connect.mayoclinic.org/discussion/joint-clinical-guidelines-for-prednisone-induced-adrenal-insufficiency/

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@sister2

Can you share your findings about using a gluten free diet? Did you start that before PMR?

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Hi, I was not on a GF diet before PMR, it was a mostly healthy Mediterranean diet, lots of pasta, meat, fresh veg but I did eat pancakes, pastry and the odd bit of cake. I had a lot of heartburn, bloating and gut discomfort but thought it was due to a hiatus hernia and food combinations. Mentioned it numerous times to my GP but it was never suggested that I be tested for Celiac disease (a simple cheap blood test for gluten antibodies). Then I developed severe PMR and changed to a very strict anti-inflammatory diet. The removal of processed foods almost immediately stopped the quite severe gut problems I had been having for many years. I was on a low gluten diet for the first 12 months and it seemed to help reduce the PMR inflammation, if I slipped up the pain levels would increase. About 2 months ago my 7yr old grandson was diagnosed with definite celiac disease, his father, my son was then diagnosed and I'm pretty certain I also have it (The blood test doesn't work if you have been on a gluten free diet). Since then, I have been strictly gluten free and using celiac disease protocols for separating my food prep areas from my husband who is not GF. It has been a blessing to discover all this. My son and grandson were both very ill and it has made a huge difference to their lives to go GF. I am certain that it is helping me with my PMR, my inflammation levels are still a bit high but I could get more sugar out of my diet and I've been eating GF bread which I shouldn't be doing. I'm still reducing Prednisone and Hydroxychloroquine and finally feel like I can manage without the drugs apart from Paracetamol for the occasional arthritis pain.

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@sister2

Can you share your findings about using a gluten free diet? Did you start that before PMR?

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Just a further note on the Gluten Free diet, if you think you may be sensitive to Gluten, get tested for Celiac disease first before going GF. It's a primary auto immune disease that can result in secondary auto immune conditions like PMR. It can take several months to years for the gut to heal from gluten damage and adhering to the diet is a lifelong commitment. The good news is that although the incidence of true celiac disease is fairly low, about 30% of the developed world population is tuning in to the damage wheat, rye and barley is doing to their body and GF is now a lucrative market for processed food manufacturers so food choices are increasing exponentially. The bad news is that a lot of GF food choices are pure starch, loaded with corn syrup and nutritionally deficient. For people with PMR, these foods can cause further inflammation

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@sister2

I am new to this support group. Can you direct me to the location of the information you posted?

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This link is the source of the information. These recommendations were the work of European endocrinologists and their counterparts in the United States.
https://academic.oup.com/jcem/article/109/7/1657/7667842?login=false

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@linda7

I have been splitting the 1 mg tabs for a couple of years now. As soon as I dropped below 8 mg I needed to taper .5 mg at a time. I use 5 mg and 1 mg tabs. My ones are scored down the middle and I use a pill cutter. It was hard to find one that did a good job. Even if the pill is split unevenly I get the whole 1 mg over 2 days. Unfortunately, my ones and fives are both orange, just a slightly different shade and size. My doctor thought a .5 mg drop was too small but I told him that was how I needed to do it.

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I am another fan of tapering by .5 increments. My only instructions are to reduce by 1 mg every 2-4 weeks once below 10. I am now at 7.5, and have been going down by .5 every 10 days to two weeks, and am doing very well. But…many folks seem to run into big problems below 5, so we shall see.

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@ninadavis

There was someone on here who said that a nurse told her that tablets should not be cut unless there is a line to do so as the ingredients maynot be evenly dispersed in the pill. That is ridiculous, though it comes from a good-hearted person. But it defies common sense.

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That was me and I thought it made a lot of sense. Do you know how pills are made?

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No, I do not. On my 1mg tablets of prednisone the dividing line is not even in the middle of the pill. It's just common sense with these pills which do not have a coating. There is no way in the world one side of the tablet has more of the Rx than the other. I do not have any knowledge of how pills are made but am assuming it is similar to sausage.

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