Update : I joined this forum in 2014 when I was... - PMRGCAuk


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katpat profile image

I joined this forum in 2014 when I was diagnosed with PMR in August and GCA in December. I did have a positive TAB in December 2014. You all know the story. Started Prednisone 60 mg. While tapering in 2015 had a couple of PMR flairs. Was started on methotrexate by mouth, then injections. This was not successful (and felt very bad during this time). Rheumatologist put me on the oral chemo drug, Cytoxan. Felt even worse on that one and eventually had a reaction to it (severe itching). In the summer of 2016 things settled down and I had some quality of life back. During the past couple of months have new diagnoses -- RA. Have not started this med yet (Arava). Just have to think about it a few weeks. I live in the USA and I am a retireRN. This forum is the best. I really appreciate all of the good info.

4 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi katpat,

Sorry to hear you've had such a rough time recently. Do hope things improve for you - dealing with one illness is bad enough, but when others join it it's no joke.

Take care.

PMRpro profile image

That is mean - confirmed GCA and now RA! All the best with next attempt.

Hi katpat

I was also put on Arava.

It didn't help me and I felt much worse. Got a lot of problems with my eyes, inflammation, abscess on retina etc and also GERD disease.

I am lowering Predisone very very slowly, every 2 months 0,5mg.

I am now on 4mg.

Methotraxte didn't help me either.

You need a lot of patience with PRM,

I think that Steroids sparing drugs are worse than Predisone


Hi katpat, Cytoxin was the pits for me, we aren't sure if the combination of cytoxin and another IV med caused a vascular blockage at my aorta or not which required emergency surgery, so no more of that. I have 3 autoimmune illnesses and prednisone never did much for me. IV Solumedrol has been given to me now at every bad flare. I feel relief pretty fast with it. But I need it usually for 5 days. Everyone is different, and their bodies react differently. We haven't found anything that works for me except for the solumedrol that calms things down for a short while. I live in Connecticut and just started with new specialists hoping to get answers. You have so much on your plate and I hope you can get some relief soon. I am around if you need a friendly ear. Also, when I Google PMR there was something that caught my eye, it was a link for PMR and Vascular. I need to go back and read more. I will keep you in my prayers. Gentle hugs. Xx

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