Update: from Cleveland Clinic

[RiviS7]

Hi, I went to the Cleveland Clinic on Monday(rheumatology department). Dr. Villa Forte told me that she is convinced I have vasculitis(GCA/TAK). She said the damage done 8 years ago was most probably Takaysus arteritis. She asked a lot of questions and looked at my bloodwork and notes from ER and primary doctor. She said especially because my symptoms went away after about two days on prednisone. She ordered catscans for my brain, neck, chest and abdomen. I have to stay on 20 mg pred until I see her again in about a month's time. She said then she will go over treatment plan with me. She said she will get me down on the prednisone and start me on other meds.

I was so hoping she was going to say I don't have vasculitis, but I guess this is going to be my new normal. I am feeling very down and not feeling well either: diarreah, sweating, very tired and brain fog. I will try and make a point to walk every day to help combat my depression. Right now, I don't know if any damage has been done, but I will find out in the next few weeks.

I so appreciate everyone's stories of their journey with PMR/GCA. My family doesn't really understand how hard it is to have this condition, but I know everyone on here gets it.

Bekah

[PMRpro Ambassador]

At least you may have some answers now - do keep us up to date with developments.

[RiviS7 in reply to PMRpro]

Thank you, I will.

[Fatsiajaponica]

Hi Becah, the symptoms you describe are very much where I have been with the prednisolone and to an extent still am (I'm on 20mgs having recently reduced from 60mgs following an eye scare). The brain fog and fatigue. I had chronic diarrhoea but this was related to the stomach protector, omeprazole which I understand you are not on at the moment? Of course some symptoms, like the fatigue, may be due to the actual illness itself.

No wonder you are feeling low given your journey with vascillitis and all that has entailed for you over years. Now you are getting some answers and will be treated appropriately and you will be supported by the people on this forum with advice and empathy. Take care of yourself, give it a little time and when you can reduce the steroids you will feel better (not too quickly though, get some advice on here for that from people who know about this stuff. )That isn't me as I am relatively new.

Take care of yourself and make sure ytou let us know how you are doing, we will be wondering. Also sending a hug.

[RiviS7 in reply to Fatsiajaponica]

Thank you Fatsiajaponica!

I wasn't prescribed omeprazole, but when I see my gastroenterologist I'll ask him about that. I am scheduled for a fibroscan, which should tell me how far or bad my liver disease has become. I think all my chronic conditions are complicating everything. The one positive of being on pred is that it seems to be stabilizing my hashimotos thyroid, but everything else is just bad, especially the diabetes. So far, I haven't gained any weight on pred, but I try hard to stay away from salt and sugar. Thank you for you kind words, really so nice to talk with people who understand.

[Grammy80]

This is for sure the place to be. We all walk the same journey and as you said, "everyone on here gets it." Love us though they might. Here you can ask a question and everyone sees the whole picture !! With all you have coming up....here you get the knowledge and hugs you need along the way. I'll never leave this forum...I'll be legitimate because I know now I will have to stay on pred for the rest of my life...but I'm OK with that. So glad you are here!!💞

[RiviS7 in reply to Grammy80]

Thank you Grammy80And a big hug to you too