Mix connective tissue disease with over lapping disease lupus, etc

Welcome to Mayo Clinic Connect @lolabunny610 ! This is a great place where folks come with questions and those who have had experience, answer them.
You have quite a load to carry, do you have any assistance with keeping all the meds and rules separate?
How did you find Mayo Clinic Connect?

I have a team of doctors/providers that over see my medications. I found the Mayo Clinic support group by goggling support groups.

I feel alone in this battle outside of my doctors/providers. Just looking to connect with others who are going through something similar.

Any good advise regarding autoimmune diseases?

Hi Laura, I have had a similar diagnosis that does not fit in one box. I was diagnosed 1 1/2 years ago following an acute illness. I had been having some inflammatory issues for a few years prior but officially diagnosed at 51. I have official diagnosis of seronegative RA and auto inflammatory disease. I have a local rheumatologist and did go to Mayo 9 months ago for rheumatologist and genetic consultation. Both of my siblings have forms of autoimmune disease as well.
It has been an exhausting and humbling journey. I have been in healthcare for 32 years as a nurse and learning to advocate for myself and not push myself has been a challenge. I have had several reactions to different medications and currently recovering from an allergic reaction to IV infusion. I wish you all the luck as you also journey through this. It is hard to feel so bad when people look at you and don’t see “sick” I am glad you have a good team of Doctors. You are definitely not alone in your journey.
Lori

Hi there, I was officially dx with MECFS, Lupus SLE, MCAS and POTS. I was also dx with Sjogren’s and in fact that was what I was originally dx with at the start of my sudden onset illness triggered by the vaccine. So the first rhumi had me spit in a cup and told me I don’t have Sjogren’s. Over a year later I lost 20 pounds it seemed overnight and my hair was falling out like crazy. I kept getting rashes especially my face burning up both outdoors but also inside randomly. I had pain it felt like everywhere. I went to a new Rhumatologist who sent me for a lot of lab work including out of province to a special lab and my labwork came back confirmed Lupus SLE. Started treatment of Plaquinil which took a long time to feel some difference. Though I was having breakthrough pain. I started seeing another rhumi closer to my home and she confirmed Lupus SLE. I was never sure about the positive sjogren labwork because although I did have some dry mouth it wasn’t bad at all and my eyes were fine. Went on methotrexate and it did not agree with me so after 2.5 months I came off it. It made my pain worse for 4 days even low grade fevers, couch ridden feeling terrible, then improvement for 2-3 days but then the cycle would continue. I came off it for good. This ruimie left the country so now seeing another rhumi who is questioning my dx altogether. She sent me to a Sjogren’s specialist who has dx me with UDCTD. She did a Schirmers test and cup spitting test that came out negative. Which is surprising since I have been experiencing increased dryness over the past 6 months or so. I have to now use a moisture tablet during the night and I have begun to have choking episodes during the day, only a couple of times, but there was no saliva to swallow the food. I can’t eat crackers easily anymore and popcorn is out completely. I wake up several times a night without saliva to swallow. I’m confused about what is happening and why two rhumie’s who have confirmed my dx are being questioned by my new ones. What kind of specialty is this that they ignore labwork and each other?

Also, the Plaquinil helps with pain about 30-40%. I have tried to reduce the amount to 200 mg but within 24-48 hours the pain comes back and fast. It has helped take the sores in my mouth away and it tines down the pain but I’m struggling to live with the other 50%. Has anyone experienced this before? I have other symptoms but mostly migrating joint and muscle pain. Sometimes jabby, I also get neuropathy in my big toes and wake up with neuropathy in my hands/fingers almost regularly and I’m stiff in the morning until I open and close my hands for a few minutes. My hair is still thin and I’m also having regular pain on inhale that has lasted a few weeks and comes and goes. My previous rhumie called it pleurisy, the ER doctor gave me prednisone and an injection that helped tremendously but it keep a coming back though not as acutely. But very uncomfortable still. I’m confused about what is happening with me.

This just scares the heck out of me because I have so many small blips of many autoimmune diseases following my Hashimoto's. My TPO antibodies have been normal but lately bad fatigue, sharp pains all around the body mainly around tendons of joints, the eyes stuck to eyelids at night even with using drops, dry mouth sometimes so dry it feels gross, nausea sometimes but no appetite at all until evening. I have dropped about 10 pounds. I get the low blood sugar shakes at night but could be because I just am not hungry during the day. Try to keep up with liquids and electrolytes. I have no enjoyment to do anything. My osteopenia is close to osteoporosis probably because of cortisone shots over the years. I AM NOT ready for those medications. I see a rheumatologist in December as that was the first available appointment. Trying to "feel again" about anything.

@llwilliams73 @tls5alex This is a difficult time for both of you, but you will get through it. I, too, wondered why/how on earth did I get this autoimmune disease! Now, my two sisters and I have been diagnosed with autoimmune diseases. And I, a 25+yr nurse, just like you, @llwilliams73 , spent the summer answering questions and translating medical jargon in their medical records. And we were all saying “why me?” The problems with AD or AI (not a good shorthand) are very difficult and take a long time to diagnose, and every patient reacts to the medicine differently. And then, the medicine will stop working! So, what can you do? First, you can start keeping a journal with your medicines and anything that makes you feel differently. Take this journal to all doctor appointments so you can take notes in it. Write your questions in it so you won’t forget them. You want to take control of your disease! Keep your chin up and be positive! Let people help you! All of us at Mayo Clinic Connect are cheering for you! I know it’s difficult but you’ll find it gets easier over time. Becky

Hi Laura! You sound just like me! My heat intolerance is awful and no one seems to know how hard it is. I had positive ANAs and P-Anca for 5 years. The Drs had misdiagnosed thinking it was lupus, syorgen's syndrome, vasculitis. I had one other issue though, a rare genetic disease called acute intermittent porphyia. I went 10 years without treatment and finally was diagnosed with mixed connective disease non- autoimmune. This caused a huge issue because a rheumatologist treats autoimmune and wasn't willing to help me. This disease affects everything! I decided in 2021 to look at what was causing the porphyia attacks and put it in to remission. I found it! With the supplements I started taking faithfully my ANAs and my P-Anca s turned normal. I wondered in it would help people with autoimmune disorders too. I started taking Glycine. I also added B-complex because Glycine does not metabolize without vitamin B6. Since GMOs came out people are having more autoimmune, digestion and sleep issues. If you take PPIs(Prilosec,Zantac etc) vitamin B and other vitamins can not break down at a 7ph in your stomach which also leads to glycine deficiency. Also glyphosate is made of a combination of glycine and phosphonate which blocks glycine receptors. It's very important to eat organic ,not non- GMO verified. This means that the plant isn't a GMO plant but these are usually grains that are killed using glyphosate to be able to harvest. All that is needed is a 1/4 tsp. of powdered glycine a day. I use powder because of malabsorption. It might be worth a try. After 12 weeks you should see results in your blood work. Don't go by symptoms. That might take up to a year to resolve. Keep me updated please.

@llwilliams73
Lori,
You made me feel good knowing I am not the only person going through this…. I feel so alone at times. I try talking to family, and friends no one understands how frustrating it is to not be able to do your normal basic things in life a 43 year old should be able too. As a nurse I had to learn to advocate for myself and I am still trying to find a happy medium between work, home life, and my condition.