1. < Autoimmune Diseases

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.

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Amy | @larsona10 | May 23, 2017
In reply to @taterjoy "Hi LisaBeans. I am sorry you are suffering so, and are in limbo as far as..." + (show)
@taterjoy

Hi LisaBeans. I am sorry you are suffering so, and are in limbo as far as a diagnosis. I hope you can find answers and effective treatments or non-drug modalities that will help. Good that your ulcerative colitis is in remission--hope it stays that way!

It sounds as though inflammation (skin and/or joints) and pain are key symptoms which may be why they are prescribing methotrexate (autoimmune inflammatory diseases such as Rheumatoid arthritis, psoriasis, or Lupus, which can be associated with elevated ANA). It appears also that you have symptoms of rosacea (facial redness). Your positive ANA could, instead, be due to other disorders such as Sjogren's syndrome (dry eyes, join pain, dry mouth), joint pain, fatigue (and other symptoms). Lupus can cause facial rash, joint pain, and other symptoms; rheumatoid arthritis (RA) which usually presents as joint pain in specific "patterns" (specific joints, and/or affecting joint symmetrically meaning if your left hand is affected, most likely your right had is too, but not in EVERY case). There are other diagnoses that also may relate to positive ANA such as scleroderma, Felty's syndrome, and others. You might google these conditions using each condition name as a search word, plus the word "symptoms" Maybe you will see a configuration of symptoms listed that will help identify which condition is most likely.

I also have positive ANA blood test results, and lupus was suspected. However, I do have at least four symptoms (from a larger list of lupus symptoms) required to be diagnosed with lupus. No specific pattern to definitely diagnose RA, or any of the autoimmune diseases often related to positive ANA. My endocrinologist stated that until a symptom pattern develops (a constellation of symptoms, lab results, or biopsy), it is difficult to diagnose specific conditions, many of which have symptom overlap.

I do have other autoimmune conditions such as hashimotos thyroiditis, rosacea, dry eye syndrome, psoriasis (elbows/knees/fingernails), porokeratosis (not really autoimmune, it's an inherited disorder), mouth/nasal ulcers, and an undiagnosed episodic (occurring at irregular intervals, like a flare) inflammatory arthritis. For me, sun, situational stress, and acute illness are "stressors" on my immune system, which worsen my symptoms. Getting as much exercise as I am able, taking fish oil, and eating a high fiber diet avoiding processed foods are the main lifestyle measures I use to try to fight symptoms. I hope your specialist can help you find treatments and lifestyle measures to help you feel better.

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No, I haven't. But it just seems like the combination of adrenal fatigue, autoimmune and thyroid disease are actually getting worse for me with supplements which have been recommended. What is mast cell activation syndrome all about?

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TracyAnn | @tracyann | Jun 16, 2017

HI guys I was diagnosed with crohns disease last june and would love to meet other people and hear their story. Thanks for all your input on your trials and success .

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2 replies
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 4, 2017
In reply to @tracyann "HI guys I was diagnosed with crohns disease last june and would love to meet other..." + (show)
@tracyann

HI guys I was diagnosed with crohns disease last june and would love to meet other people and hear their story. Thanks for all your input on your trials and success .

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Hi @tracyann, and welcome to Connect,

My sincere apologies for the tardy reply, but somehow your message slipped past me; I'm so glad you've joined this group.

I'd like to start by connecting you with other members who have experience with Crohn’s — either themselves or a family member. @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 @thankful @spiderwebb @jay_baruch @guener @bonitav @joannem @chicoco @gillyk14 @kaycigirl, please meet @tracyann, who would like to learn from your journey, and how you have managed living with Crohn’s disease.

TracyAnn, you may also wish to post your message in this discussion on Connect:
Crohn's disease http://mayocl.in/2ummHmB

I would sincerely encourage you to view Mayo Clinic's IBD blog, http://ibdblog.mayoclinic.org, where Mayo Clinic experts talk about Crohn's disease & ulcerative colitis, and various treatments, ongoing research, current events.

We look forward to getting to know more about you, @tracyann. What type of foods help you? Have you been prescribed any medication?

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oldkarl | @oldkarl | Jul 5, 2017
In reply to @tracyann "HI guys I was diagnosed with crohns disease last june and would love to meet other..." + (show)
@tracyann

HI guys I was diagnosed with crohns disease last june and would love to meet other people and hear their story. Thanks for all your input on your trials and success .

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@tracyann Just a quick note. My sister is in the final stages of life with Crohn's. She is a patient at MD Anderson (Houston), and one of about 15 in our close family with various types of amyloidosis (Plasma Cell Dyskrasias--Protein misfolding, etc.) It is rough, and she has always been very healthy. All the eight siblings have some show of protein disorders, plus at least four of the next generation. One sibling (70) and her daughter (50) have died. It is not easy to face. But eat a good diet, keep exercising when you can, and ask a lot of questions, watch many videos, read what you can. My eyesight is going, so I will probably be limited.

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 5, 2017

Thank you for the insight, @oldkarl; I'm so sorry to hear about your sister. Please keep the Connect community updated, and continue to post and share...we're listening.

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oldkarl | @oldkarl | Oct 22, 2017

@lisabeans Perhaps you need to rule out a few things. I would start by ruling out mis-folded dead and dying Protein deposit disease, or commonly called Amyloidosis. You can find a list of many of the common Amyloidosis (short form: Amy) in Wikipedia.com. Search for Amyloidosis, then study that article, and articles on Amy from ALNYLAM.com and Mayo. Have your doc order a Bindings/Mayo SERUM FreeLiteChain(c) test from a good lab, such as Mayo, Quant Labs or ARUP Labs in Salt Lake City, along with a 24-hour total protein survey. If the sFLC figure is >1.6 mg/deciliter, or the 24-hr is > 0.5g/day, it is a sure sign you have trouble in that area. Sounds like Sjogren's or SICCA, + Syncope + autoimmune familial insomnia + GI issues. All possible, and markers of AL Amy.

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lisabeans | @lisabeans | Oct 22, 2017

Thanks. I will check that out. I am now seeing a 3rd rheumatologist. He feels it is an ai (possibly ra) and fibro.

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1 reply
kibwezi | @kibwezi | Oct 22, 2017

I wouldn't rule out Sjogren's Syndrome. Dry eyes and mouth sores are two things that are definitely symptoms although they can be symptoms of other things too.

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lisabeans | @lisabeans | Oct 22, 2017

My blood test for Sjogrens came back negative

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mtnyankee | @mtnyankee | Apr 10, 2018

About six months ago my doctor of maybe 30 years said inflammatory arthritis. My question here is what does that mean? Over so many years of testing I have learned it isn't so easy to get to the final answer. I know that's not what anyone wants to hear. When she told me Fibromalgia, Sjogrens, Raynaulds, and a few diagnoses that seemed to be an answer there was still something that wasn't answered. What I am trying to say is we have to look at the bright side. All this time they've been learning new things and new meds are being discovered. Today must be a good day for me and we better all enjoy the ones we can. Hang in there.

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