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Giant cell arteritis:I’m afraid and would appreciate any advice
In April of 2015 I was diagnosed with polymyalgia and giant cell arteritis and was put on 60m of prednisone daily.<br />After a month my rheumatologist began a slow taper of the prednisone and added methotrexate to help with the withdrawal but had to discontinue the methotrexate because of side effects. In April of 2016 I was put on monthly infusions of Actemera and tapered to 1m of prednisone daily and was doing well.
However, in Nov I developed stiffness in my neck and shoulders. Prednisone was increased to10m daily. In Jan prednisone was lowered to 9m but has not been lowered since even though doctor says my labs all look perfect.
At this point I'm losing faith in my doctor and not sure how to proceed with treatment. Because I have no family or support system in this country I have no one to discuss this with so I'm hoping someone out there can give me some insight.
I've recently been diagnosed with Sjorgens syndrome and was told treatment was the same as PR and GCA. so nothing further need be done. I'm now dealing with facial pain, fatigue, chronic constipation, swelling in my legs and hands and insomnia.
My recent lab tests show high bilirubin scores, high total neutrophils, plus low eosinophils absolute, low monocytes, and low monocytes absolute. I don't know what all that means but when I question my rheumatologist about it she does nothing to alleviate my fears and just says "your labs all look perfect" and maybe you should see a therapist.
I'm very afraid of what is happening to me and would really appreciate advice from anyone out there with knowledge and information about my health problems.
Thank you
Anya
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Hi Sandy @brightwood, I used the search feature of Connect and I think the post you may be referring to is by @jeff97 and the response by @megz here - https://connect.mayoclinic.org/comment/1246860/.
The posts are found in a discussion started by @dadcue here:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
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2 Reactions@brightwood
It isn't too surprising that doctors aren't familiar with this tapering method. There isn't any research that has ever been done to support this tapering method. It is just one of many different ways to taper Prednisone.
I think you are referring to the Dead-Slow-Near-Stop (DSNS) tapering method. I mentioned this method to my rheumatologist once. She appreciated the difficulty that comes with tapering but said I shouldn't make it more complicated than it already is. DSNS is an ultra slow tapering method that doctors dislike but it is popular with some patients mostly in the UK. However, patients in the UK seem to have just as many flares and relapses tapering this way as compared to other ways of tapering. ---just my opinion because of the lack of research.
My PCP gave me some leeway to taper however I wished. When he wrote my prescription for more Prednisone ... he wrote "taper as directed" without specifying any precise way to taper. My doctors were good about prescribing different sizes of tablets. I always had an ample supply of 20s -- 10s -- 5s and most importantly 1 mg tablets.
The way some doctors control how you can taper is by limiting the quantity and size of tablets they are willing to prescribe. Some tapering methods involve a lot of extra work cutting tablets to the right size and keeping track of what dose you take on what day. Doctors generally aren't willing to prescribe Prednisone to facilitate a DSNS taper because it involves too much work for them to prescribe Prednisone this way.
You might want to suggest Actemra (tocilizumab) for the treatment of GCA. There is research that supports Actemra for GCA and it makes it easier to taper off Prednisone for many patients. It is also FDA approved for the treatment of GCA.
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3 Reactions@marieameehan, my mother-in-law was diagnosed with GCA in her late 80s and lived to be nearly 100. I've had it twice so far. If you have a good physician and follow instructions, you'll be fine. For most people, it eventually burns out.
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