Hi, I am new to Sjogren’s but not new to Ben’s friends. I have been on Fibro for quite some time. I went to the Mayo Clinic in Rochester and was diagnosed with probable Sjogren’s. The doc there recommended treatment with cellcept or imuran. He did not start the treatment because it was going to be over two months before I could see my rheumy at home and he wanted monitoring. Well, my rheumy at home disagrees with his diagnosis and refuses to treat me. I’m looking for a doctor in the Birmingham, Alabama area that would be willing to communicate with the Mayo doc and at least give this treatment a try. Thanks!
Hi and welcome @Mbp! I’m not particularly useful with your question looking for a recommendation for a doctor in Birmingham, AL. I did find an interesting article talking about imuran specifically at https://www.medscape.com/viewarticle/554326_2
I didn’t find anything really supporting the use of cellcept with Sjogren’s. I’m a bit surprised that plaquenil wasn’t mentioned. This seems to be the starting point for many people with Sjogren’s, when a systemic treatment becomes necessary.
I’m curious though. . . . you said that your local rheumy is arguing the diagnosis. What sort of testing have you had done already to support the diagnosis? What is the local rheumy arguing specifically?
I had a negative lip biopsy and the local rheumy said that there is no way that you can have Sjogren’s with a negative lip biopsy. I have been on plaquenil before when I was diagnosed with MCTD but it did not help. I was also diagnosed at different times with RA and lupus and was on arava (I think) and methotrexate. The Mayo docs ruled out RA and lupus. I’m no longer on methotrexate. It didn’t really help me anyway. The doc at Mayo had years of experience with Sjogren’s and said that he was sure of the diagnosis before the lip biopsy and stuck by the diagnosis even after the negative lip biopsy. I so wish I could afford to fly up there every time I needed to see a doc. They were great.
That makes sense. As you already know, a negative lip biopsy doesn’t rule out Sjogren’s. It’s a bit hit or miss whether they biopsy the “right” spot.
I get so frustrated when I hear about doctor’s like this. I’ve had this conversation with my rheumatologist, about seronegative arthritis, and clinical diagnosis of autoimmune disease. I have seronegative psoriatic arthritis, and thankfully my rheumy believes in this. Your’s doesn’t believe in a positive Sjogren’s diagnosis based on clinical symptoms. Aargh. That’s so frustrating!
I am currently waiting to get results from my lip biopsy. My gut instinct is it will be negative because nothing is ever so cut and dry when I’m concerned. Lol. My ruemy first suspicions were either ss or help c. All hep test were negative and I daily get anxious and upset to go along with my muscle and joint spasms and aches. Even my scalp seems sore these days and I often wonder if I’m just dying slowly.
You have no idea how frustrating! I need to find a doc who will treat me as a person and will treat my clinical findings and not just lab work. I once had a doc who treated only lab work and never examined me and I had to get away from her. I don’t know which is worse.
Cole, I often wonder the same thing. I told my therapist the other day that I didn’t think that any doc would take me seriously until I was dying. I spent a lot of time and money flying from Alabama to Rochester, Minnesota to see some of the best docs in the world and I don’t understand why these docs here just dismiss what they said without so much as consulting with them. They read their records and just say they’re wrong. I had one pain management doc start to tell me what meds my psychiatrist should and shouldn’t be prescribing and I lost it. I told him it was none of his business and that he needed to stay in his own lane. I don’t know what to do about these docs.
I live in Alabama also but i live in the Southeastern part. 4 or more hours from Birmingham. This is all so new to me and I feel I wear the deer in the headlights look daily trying to understand any of this. But if I do come across Drs that help I will surely let you know. 
Cole, where do you live? I used to live in Dothan and had a pretty good rheumy there but she closed her practice. I did have an excellent primary care doctor who is still there.
I live about a hour from Dothan but am driving there for Dr appointments I’m currently seeing Drs at semc.
I also live in Alabama, not far from Birmingham and I am also looking for a new rhuemy. My current doc said I can take Plaquenil if I want to but it is not necessary because it’s not like I have lupus or something, it’s only Sjogrens. I walked out of her office and I will never go back.i live in the Oxford area close to the Talladega Speedway. I hope you find a good doc soon.