Undiagnosed auto immune disease, put on Leflunomide
I have auto immune issues but am still undiagnosed. I have joint and muscle pains sometimes to the point that holding my son's hand hurts. I have sensitivity to light and sun where I get very dizzy, nauseous and my face gets red on my cheeks and nose. I have an positive ana 1:160 homogenious. My rheumy started me on plaquanil and it worked okay but still has a lot of pain. Then tried sulfasalazine but my liver count went through the roof so we stopped that. Methotrexate made me very sick so now I am on Leflunomide. That has helped a bit but still have burning pains and my face is still red. I am seeing a new rheumotolgist in May while still seeing the guy I have been seeing. I do have ulcerative colitis which is in remission. I also have dry eye and get mouth sores. I am so confused (going on 2 years trying to get diagnosed). Any one else have similar symptoms and were diagnosed? I feel so lost.
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My Heart , Thoughts and Prayers go out to you with the Lyme Disease! This last year coming down with it was the hardest year of my Life! It was hard to keep a "Positive Attitude" living with it every day! If you can only afford your local medical industry it is very Frustrating going from Dept. to Dept. in the hospital structure with no one willing to help. (One good thing that came of it was finding I had an 80% blockage in the artery in my neck. Working on having it removed after the first of the year)
I was lucky to have an "Old Time" doctor to work with me on easing some of my pain. The fatigue the joint pain, the mental fog and many other symptoms were still there. But the 24/7 headaches were controlled.
Like many others I woke up one day and my physical strength and other symptoms were gone! But as we all know once you have Lyme it never leaves your body!
There are several good web sites that give you very helpful info on how to live through it.
Rest is the Biggest! I still try every day, no matter how good I feel try and take a nap. It refreshes you and gives you that little bit energy to enjoy the rest of the day.
Keep doing research and learning about Lyme. If nothing else it helps you know you are not Crazy as others are suffering through the same thing. You will also pick up bits and pecies of things that may help you.
PEACE!
SUNDANCE(RB)
Hi @lisabeans I, too, went undiagnosed for months. We finally went to the university hospital and the doctors there knew exactly what was going on. I get treatment locally but it is all determined by the doctors at UCHealth. Long story, but I’m wondering if you’ve been able to get to a large medical center or university hospital?
I did go to the university of Penn but wasn't happy with them. I found a local rheumatologist and finally have gotten diagnosed with RA and fibromyalgia. He ran a special blood test (vercta d) which showed inflammation and is used for RA.
Dry mouth and eyes could be sjogrens. Aches in joints is a common ailment, a lot of problems have that.
I had sore muscles, exhaustion, and periodic 104.7 fevers ... I spent numerous days in urgent care and the emergency room on IV's trying to get my fever down. No one thought to test me for almost two years One day, the diagnosis shows up on my online medical portal. I was unable to see my doctor so had an appointment with a nurse practitioner. I took my husband to verify my symptoms as I felt that I wasn't being believed. When I asked about the diagnosis of Rocky Mountain Spotted, we were told to go to the CDC website for information. When we read the article, my husband (who has an MA in Microbiology) said "I'm very concerned about your health." whereupon I responded, "me too". My next two appointments with my doctor ended up in a shouting match because I asked why I wasn't being treated. Her response was "you don't need to be". Then she offered to send me to a psychiatrist for meds to calm me down. During the first visit with the psychiatrist she said, "let me get this straight, your main concern is that you feel that you cannot monitor your health properly". She hit the nail on the head. She decided to investigate which took six months to find out that the reason I wasn't treated was because by the time I was tested for it, I had survived without the treatment. Meanwhile I had panic attacks as I called my state department of health, the CDC and my stepdaughter who is a PHD Lyme disease specialist. They all verified that my case had been reported to the CDC as required. I asked my doctor for a referral to an infectious disease specialist, but she refused, and I could not make an appointment to see me without the referral. My husband believes that after nearly 10 years, I am still having physical problems because I was not treated.
I, too, have been on several medications for an autoimmune disease called Polymyalgia Rheumatica. Methotrexate made me throw up every day. I also tried Leflunomide which did not help. After a few months on it I broke out in a horrible rash that itched profusely. It lasted six weeks. I guess rashes are a potential side effect. So be aware. I am finally doing well on a biologic infusion called Actemra once a month.
Wishing you well. Autoimmune conditions are not easy!