Undiagnosed auto immune disease, put on Leflunomide

Posted by lisabeans @lisabeans, Feb 13, 2017

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.

The symptoms that you describe sound so much like what my daughter and I have experienced. We were tested for Lyme Disease with a test from the CDC…the usual one used in hospitals and clinics. We tested negative for Lyme. Then…we went to a Functional Integrative Medical Doctor and she used a test for Lyme called ISAGENIX. Both of us tested positive on several strains of Lyme. We learned that antibiotics actually make Lyme worse before it gets better, but antibiotics are THE treatment needed. There are actually Lyme Literate doctors scattered throughout the country. There is one in Mankato, MN and another in Columbia, MO. It would DEFINITELY be worth your time and money to get a consult with one of these doctors. They alternate antibiotics and use tons of supplements…and finally, you will get your health and your life back. There are Facebook pages dedicated to this as well since Lyme patients have so many struggles and they need to collaborate for answers. I feel VERY strongly that this is what you are dealing with since you have all of the symptoms. Best wishes….

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@crazey22 — I think @vickiekay may be referring to the IGeneX test. Here is their website with more information:

https://igenex.com/ — There is also an announcement with details of the test here:
https://www.businesswire.com/news/home/20171016005904/en/IGeneX-Introduces-New-Diagnostic-Tests-Lyme-Disease

Liked by crazey22

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@vickiekay

The symptoms that you describe sound so much like what my daughter and I have experienced. We were tested for Lyme Disease with a test from the CDC…the usual one used in hospitals and clinics. We tested negative for Lyme. Then…we went to a Functional Integrative Medical Doctor and she used a test for Lyme called ISAGENIX. Both of us tested positive on several strains of Lyme. We learned that antibiotics actually make Lyme worse before it gets better, but antibiotics are THE treatment needed. There are actually Lyme Literate doctors scattered throughout the country. There is one in Mankato, MN and another in Columbia, MO. It would DEFINITELY be worth your time and money to get a consult with one of these doctors. They alternate antibiotics and use tons of supplements…and finally, you will get your health and your life back. There are Facebook pages dedicated to this as well since Lyme patients have so many struggles and they need to collaborate for answers. I feel VERY strongly that this is what you are dealing with since you have all of the symptoms. Best wishes….

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Thank you!! I’m going to ask my doctor about this! I am absolutely miserable. I need some relief. Thanks again!!

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Hello! I'm so sorry you are still working on a diagnosis. I have lupus and went a similar route. I was diagnosed as early connective tissue disease in 2009 due to miscarriage, ANA, joint pain, fatigue, etc. In 2011, the psoriasis began and I was finally diagnosed with psoriatic arthritis. After many med changes, I landed on azathioprine which has fairly well controlled it and had to change rheumatologists who changed my diagnosis to lupus….although she says it could be a crossover of the two. I am also sun sensitive and get random mouth sores. I nap once a day if I possibly can. Also, my mom has lupus. Hold on. I know it's frustrating, but don't give up.

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I would also like to agree that you should check out the Lyme's route. I was bitten by a tick last year and ended up with Rocky Mountain Spotted Fever. My doc treated it with antibiotics…heavy doses and I was lucky to recover. It was awful.

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@lupusjourney

Hello! I'm so sorry you are still working on a diagnosis. I have lupus and went a similar route. I was diagnosed as early connective tissue disease in 2009 due to miscarriage, ANA, joint pain, fatigue, etc. In 2011, the psoriasis began and I was finally diagnosed with psoriatic arthritis. After many med changes, I landed on azathioprine which has fairly well controlled it and had to change rheumatologists who changed my diagnosis to lupus….although she says it could be a crossover of the two. I am also sun sensitive and get random mouth sores. I nap once a day if I possibly can. Also, my mom has lupus. Hold on. I know it's frustrating, but don't give up.

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Hello @lupusjourney, welcome to Connect. Thank you for posting and sharing what helps you. While it's definitely not great to have undiagnosed autoimmune conditions, it is comforting to know you are not alone and can learn from others what helps them.

What do you find is the symptom that bothers you the most?

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Wow, your symptoms sound like mine too! I have Sjogrens so it's possible that you have it but it's one of those diseases that uses the process of elimination. Doc has to rule out, blood tests etc before getting to the dx. Looking back is always 20/20 and I've had this since 2005. I'm in pain today and it sucks. I'm so sorry that you are suffering too. No one that doesn't have this has no idea what our pain level is like at these times. Gentle hugs to you from Texas.

Liked by crazey22

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@pfralic

I just found this group and am wondering if there is anyone out there with all or some of the same health issues I have. I was diagnosed with Hashimoto's Thyroiditis about 3 years ago; then Crohn's 2 years ago. Fibromyalgia last summer, and severe knee pain which I just found out this week is osteoarthritis.

I just received a cortisone shot in both knees today. This week I also started the first of five weeks of iron infusions, due to low iron anemia. I just do not know what the heck has happened to me over the past 3 years! I am exhausted and take two naps a day, my joints hurt, and I have areas all over my body where my skin hurts to bump or press on. Even our cats walking across my legs hurts!

The Hashimoto's is under control with Levothyroxine, I am considered a mild case of Crohn's right now, but am scheduled for another colonoscopy soon. My stomach almost never feels good. I don't have diarrhea ever, I am more on the constipation end.

Looking for advice, I guess 🙂

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Hello @pfralic, welcome to Connect. There is another similar discussion where your post will receive more visibility and you can meet other members who have discussed similar symptoms and learn what helps them. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Autoimmune Diseases > Undiagnosed auto immune disease
https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

You might also be interested in reading through the following discussions.

> Groups > Diabetes/Endocrine System > Hashimoto's thyroiditis
https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-229f9d/
> Groups > Autoimmune Diseases > Crohn's Disease
https://connect.mayoclinic.org/discussion/crohns-disease-2/
> Groups > Autoimmune Diseases > Fibromyalgia
https://connect.mayoclinic.org/discussion/fibromyalgia-5/
> Groups > Bones, Joints & Muscles > Osteoarthritis and Vitamin D Deficiency
https://connect.mayoclinic.org/discussion/osteoarthritis-and-vitamin-d-deficiency/

It sounds like fatigue and joint pain are your most bothersome symptom. Has your doctor given any treatment or therapy suggestions?

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@texastreat

Wow, your symptoms sound like mine too! I have Sjogrens so it's possible that you have it but it's one of those diseases that uses the process of elimination. Doc has to rule out, blood tests etc before getting to the dx. Looking back is always 20/20 and I've had this since 2005. I'm in pain today and it sucks. I'm so sorry that you are suffering too. No one that doesn't have this has no idea what our pain level is like at these times. Gentle hugs to you from Texas.

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Welcome to Connect @texastreat — We are glad you found us. Thanks for sharing and letting members of the discussion know they are not alone. Do you have any treatments or therapy that helps with your pain?

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I just found this group and am wondering if there is anyone out there with all or some of the same health issues I have. I was diagnosed with Hashimoto's Thyroiditis about 3 years ago; then Crohn's 2 years ago. Fibromyalgia last summer, and severe knee pain which I just found out this week is osteoarthritis.

I just received a cortisone shot in both knees today. This week I also started the first of five weeks of iron infusions, due to low iron anemia. I just do not know what the heck has happened to me over the past 3 years! I am exhausted and take two naps a day, my joints hurt, and I have areas all over my body where my skin hurts to bump or press on. Even our cats walking across my legs hurts!

The Hashimoto's is under control with Levothyroxine, I am considered a mild case of Crohn's right now, but am scheduled for another colonoscopy soon. My stomach almost never feels good. I don't have diarrhea ever, I am more on the constipation end.

Looking for advice, I guess 🙂

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Hi @pfralic I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved your discussion to this undiagnosed autoimmune disease discussion so that you can connect with others who have similar experience. Simply click VIEW & REPLY to get to your post.

That must be frustrating having all of those symptoms. How are your knees feeling after the cortisone shots?

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Hi Lisa Beans. I am not sure if this will help or not hour for the last 10 years I would have swelling stiff joints back ache vertigo high blood pressure all kinds of different symptoms. They ran all kinds of tests on my heart and finally decided that it was lupus. Every year ago when I went in for high blood pressure again and swelling of my legs they found excessive amount of protein in my urine. So we did a biopsy I found you that I do have an extremely rare autoimmune disease called immunotactoid glomerulonephritis. But it took 10 years and one very thorough intern mind you to discover this. Over your symptoms for you sound like lupus to me

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@abrunslori

Hi Lisa Beans. I am not sure if this will help or not hour for the last 10 years I would have swelling stiff joints back ache vertigo high blood pressure all kinds of different symptoms. They ran all kinds of tests on my heart and finally decided that it was lupus. Every year ago when I went in for high blood pressure again and swelling of my legs they found excessive amount of protein in my urine. So we did a biopsy I found you that I do have an extremely rare autoimmune disease called immunotactoid glomerulonephritis. But it took 10 years and one very thorough intern mind you to discover this. Over your symptoms for you sound like lupus to me

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when you said that yuo had excessive protein in your urine, were the doctors sure you were not goin thru kidney faliure? i had kidney failure in 2002 due to an RA medicine called with massive amounts of protein as well as 43 lbs of water weight gain in 3 weeks. i also had high blood pressure. my kidneys at the time were only 30% effective. had they gone to 20% effective hen i would have been on dialysis. i stopped the RA medicine immediately and once the kidney doctors figured out how to kid my kidneys to work again, then i was sent home and put on 60 mg of lacex every day for a month until all 43 lbs were lost and the kidney tests proved positive. my ct scan of the kidneys while in the hospital revealed normal size. everything is ok today………..kozlo52

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Please do this — it will help you. Read: https://www.vox.com/the-highlight/2019/6/18/18677511/lyme-disease-diagnosis-health You should find a functional/integrative medical doctor….they can run a test called ISAGENIX that will test for Lyme Disease….the one that is offered in regular medical centers is from the CDC and it does not test all types of Lyme.

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@kozlo52

when you said that yuo had excessive protein in your urine, were the doctors sure you were not goin thru kidney faliure? i had kidney failure in 2002 due to an RA medicine called with massive amounts of protein as well as 43 lbs of water weight gain in 3 weeks. i also had high blood pressure. my kidneys at the time were only 30% effective. had they gone to 20% effective hen i would have been on dialysis. i stopped the RA medicine immediately and once the kidney doctors figured out how to kid my kidneys to work again, then i was sent home and put on 60 mg of lacex every day for a month until all 43 lbs were lost and the kidney tests proved positive. my ct scan of the kidneys while in the hospital revealed normal size. everything is ok today………..kozlo52

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Hi koslow 52. Thanks for posting. No I definitely have immunotactoid glomerulonephritis. They did a kidney biopsy and that's what it came back. I was also seen at Mayo clinic and had three days worth of test run. the doctors here had never heard of it of course since it is extremely rare however Mayo knew right away what it was. I will eventually be in kidney failure that's the end result. Just trying to sustain a longer. Of time before that comes so being very mindful of what I eat and what I do to keep that at Bay. Apparently in past patients lymphatic leukemia has been common with this as well. So for now I just get a blood panel every 3 months 2 monitor my numbers until something happens. Like I said earlier I've done a lot of reading on aryuvedic medicine, body tapping, reishi and herbal medicine.

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