Confused

[tselph]

Hi, 2 1/2 years ago I was diagnosed by a rheumatologist with RA. All the different medications that I’ve been on haven’t helped at all. So I went back to Mayo Clinic this last month & that rheumatologist told me that he didn’t see any RA. That I had significant osteoarthritis, fibromyalgia, sicca disease, & Raynauds. He said if I did have RA that it was either well controlled or in remission. So he told me to start tapering off the RA meds and wait a bit and if I start swelling in my joints with red inflammation, then he is wrong. But he was confident that it is all related to osteoarthritis. So what & how do I tell my rheumy here that he’s wrong? I still need him for my fibromyalgia & sicca.

[Gloria814]

you simply tell your current rheum. that you went to Mayo clinic and that MD thought you had no evidence of RA> But at some point something must have indicated that diagnosis---blood tests, xrays, MRI, joint examination

Make sure you taper any med slowly as prescribed. I saw my rheum. this week and asked him how he was sure I had RA and not osteo. He said blood tests and MRI showing joint erosion. I have forgotten the name of the blood test that really is specific for RA diagnosis. You should still be followed by your current rheum for sicca and fibro and maybe you are in remission or just never had RA Mistakes are made on occas

[tselph in reply to Gloria814]

You are so right. My rheum. Initially told me that the MRI on my foot showed erosion in the big toe joint. All my blood tests were negative for RA. Doesn’t osteoarthritis cause erosions also? I’ve never had swollen or red, hot joints anywhere on my body. My hands look perfectly normal. I’ve had a lot of joint & back pain though. None of which are specifically bilateral.

[Gloria814 in reply to tselph]

I did just look up erosions and OA. I read it is uncommon but that it can happen. I have minimal swelling or hot joints too and neg RA blood tests, normal CRP and sed rate normal but joint pain and severe fatigue. Some blood tests were elevated. What medication for RA have you been taking?

[tselph in reply to Gloria814]

I was on methotrexate, Plaquenil, Savella, Sulfasalazine, I’ve also been on Humira & Enbrel. Nothing seemed to help but I felt like the meds made it worse. Which now I understand why. If you put these strong meds in your body for a disease that you don’t have it like drinking poison.

[Gloria814 in reply to tselph]

sorry you went thru all those medicines and still suffered. Sicca can be associated with RA so maybe that was what the rheum thought on your diagnosis. You say mayo doc said significant OA . That can be very painful and debilitating too.. I have 3 autoimmune diseases and not uncommon to have more than 1. I have a book 'the autoimmune connection' that tells all about that

Best wishes to you. I will start cimzia again in 2 wks., it scares me

[tselph in reply to Gloria814]

Sounds like a good book. I’ll have to look at getting it. Sorry you are going so much also. What is Cimzia? Is it like Humira? Or is it an infusion? All these different diseases or so intermingled. Where does one stop & the other begin? No wonder doctors misdiagnose people. Good luck on your treatment.

[Gloria814 in reply to tselph]

Cimzia is a biologic shot that I give myself every 2 wks. It is similar to Humira. I got awful side effects on that one after 3 doses. Tolerated Cimzia 11 months and then palpitations but willing to try it again. She offered Stelara infusion but I don't want to try and IV drug just yet anyway You live in US? since you went to Mayo?? I live in MA not too far from Boston.

[tselph in reply to Gloria814]

I live in Montana. Quite a ways away.

I never tried either of those. Good luck on them.

[Gloria814 in reply to tselph]

My son and wife love MT! He took one semester at MT state in Bozeman. he loves hiking and fly flishing He and his wife and 2 kids are going there this summer to camp. He did work out there a summer or 2 when in college. At any rate, I wish you luck on your health journey--as we all are on that path : )

[Kai--]

tselph & Gloria814, merely supplemental thoughts 💭 (if interested) from Jackie 👩🏻 who has experience from ‘Mayo Clinic’ & ‘Cleveland Clinic | Center for Functional Medicine’: healthunlocked.com/cure-art... . Best wishes. 😌 🙏 🍀 🌺 🌞

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