I've had PMR for 20 months. Gained 30 lbs, have cushingnoid face,
yeast infections, and now adrenal insufficiency. Docs want me to try biologics but I'm afraid because I am a non-metabolizer and can't take many meds without severe side effects. Also have liver inflammation from the pred. Ideas? I'm struggling.
Hi Jeannae, your PMR came quite hard - sorry for all you struggles and discomfort you are going through during these 20 months.
Having GCA there are three years I just know PMR through the Forums though.
Be sure you will get many replies later on and they will bring the answers you need.
You are probably in US like me.
We get to know more and more about our health condition as time goes by and we have the chance to exchange our experience with others through the Forums.
Take care.
🌸
what sort of biologics?
i read on another post that you are seeing a naturopath - has s/he got you following an AIP diet?
Jeannae,
Having GCA for almost 7 years with a positive biopsy and high markers I also have liver problems. I was diagnosed with the autoimmune disease primary biliary cirrhosis with anti mitochondrial antibodies (the marker for it) a few months later. After all these years now I'm being told the outside of my liver looks like PBC but the three biopsies on my liver just look like fatty liver. Both Mayo Clinic and my very respected liver doc don't know what to make of it. I haven't had alcohol in years but then I hardly had any even socially. Maybe I should? Just kidding. I am careful about medicine but with four flares of GCA, having to go up to 80 mg of pred with methotrexate and my adrenals not kicking in after a few months off drugs I've added a biologic - actemra. I take an injection every other week and I've had five so far. I'm not noticing any side effects. After being turned down for coverage twice (Medicare and AARP Suppliment doesn't cover it) Genentech who makes the drug is covering the approx. $17,000. cost per year.
I also have or had PMR. It hasn't raised it's ugly head in a few years but that might be because I'm on high pred so often. I have so many side effects from the pred and pain in my back and legs from a scoliosis since childhood. Something, possibly auto immunne, messed up my heart electrical signals about five years ago. I have a pacemaker which one of two paced chambers needs almost 100% of the time. I'd be happy to get the pred down to 5mg with the actemra. I'm now at 25mg. pred.
Good luck and let me know what you decide to do. I won't know how things are going for quite awhile as I'm being very careful tapering. Jan from Florida
I'm assuming you are on pred - in which case, if your dose is above about 10mg, of course you have adrenal insufficiency secondary to taking the pred and until you get below that it won't matter particularly. Patients with adrenal insufficiency are given corticosteroids as replacement therapy, usually 5 or 10mg.
Unfortunately, weight gain goes with the pred, so do the hamster cheeks However, the pred changes the way our bodies metabolise carbohydrates and that is what leads to the localised weight gain/fat deposits. Quite a few people on the various forums have either avoided excessive weight gain or lost the pred fat by cutting carbs drastically. I have lost about 35 lbs of pred- related weight by doing that, I could do with losing a bit more but am rather stuck - however, there is no sign at all I am on pred, no fat cheeks, no buffalo hump and no midriff tyre. It can be done.
If you have doctors who are offering you tocilizumab and they have a way of funding it then you are very lucky to have the option to try it. It is still in clinical trials for GCA, from what we have heard on the grapevine is looking quite good though no results are out yet - but the chances of it being funded in the UK are very unlikely as it has just been put out to public consultation and it is not being supported.
Other than that - the one person on any of the forums who knows she is on TCZ, Jan, has already commented. For the rest of us it is a total unkown.
I replied to you yesterday late at night hoping you would get a complete answer and you got it today,
I am glad for you.
Hope you will manage your symptoms - the same illness has different ones according to the person.
Exercise the most you can if just for few minutes.
To keep moving, when this is possible , must be part of our daily routine.🌸