r/Autoimmune

Just wanted to hop on here and sing my praises for John’s Hopkins rheumatology. Today is my 2 year anniversary of being a JHU patient and I can't express how grateful I am for them. I’m seen in their general rheumatology clinic, as my official diagnosis is UCTD with overlap of Lupus and Behcets. It takes forever to get an appointment in their clinics and they do a full chart review before they decide to accept you as a patient or not, but once you’re in it is so worth it.

They’re very focused on quality of life in a way I haven’t experienced before. I see other specialties at JHU as well for various autoimmune comorbidities and this has been the case across all the departments I’ve seen. It's an institution-wide mindset. My docs want ME to set my own standards for what it means to be “doing well." They don't just look at my bloodwork and tell me my inflammatory markers are fine or my hands look normal so I "should" feel fine. They ask me if my day to day life is what I want it to be. Am I able to do the activities that I want to do? Do I feel that I have control over my condition? Before JHU I was living in a different part of the US and was at a different major university hospital. That hospital was my first experience with the healthcare system, and their standard was "you're not actively dying so it's good enough." I was in so much pain and could barely function, and they told me I was being dramatic and to stop bothering them unless my heart was actively failing. That's how I thought life with autoimmune disease was going to be. Coming to JHU was the biggest shock in an amazing way.

Because of that quality of life focus the rheumatology clinic takes symptoms seriously and they're aggressive about treatment. It's all about managing symptoms so you can live your life the way you want, and about getting control over your disease so it doesn't get worse and spread to more organs. They take pain seriously, they take monitoring for progression very seriously. My doctor always responds to my messages, is willing to try new things, and feels like a real partner in managing my care. I feel safe to push myself physically, pursue all my outdoor hobbies, do other difficult things like that because I know they will help me if I end up in a flare. At my old hospital I was too scared to do the things I wanted because I felt alone, I would have to manage my symptoms without meds and by myself if I made things worse. Now, I know they're just a message or phone call away. I can do all the hikes I want and run all the races I can because I know my doctor will help me when I need it. The peace of mind is priceless. That in and of itself has improved my quality of life by so much.

The other side of that is that they're serious about taking responsibility for your condition. I really appreciate this. They want to know what my exercise routine is, how I take care of my joints, what my sleep looks like, how I eat, what sun protection I use, all of it. Like so many of you, I am very meticulous about my habits to help manage my symptoms and I really appreciate that a doctor is willing to see the value in that. They respect that I have ownership over my disease and see me as the expert on my body and my condition.

All that to say, Johns Hopkins gave me my life back 2 years ago and I'm grateful for it everyday. I ended up with them by chance because I moved, but if you're thinking of transferring your care to them or getting a second opinion, I can't recommend it enough.

I'm more than happy to answer any and all questions about my experience with JHU, their rheumatology clinic, other specialities I see there, anything at all!

Have been fatigued and getting abnormal lab results. My doctor suspected auto immune. Did a ANA test that came back positive. Two months later i got tested again and this time it was negative.

Is it possible to have auto immune and have test come back positive and then negative a few months later?

Hello. I was injured by the HPV vaccine 6 months ago and developed all the symptoms of Postal Viral Syndrome and Long COVID; brain fog, blurred vision, anxiety and panic attacks, food intolerances, muscle pain, pins and needles feeling, fatigue, fasciculations, etc...

Days after the shot I got the pins and needles and an "electric" feeling through my right arm and on my feet toes, one night in the right and the next in the left. Those symptoms subsided and I don't feel them now however some months ago I had what I call an "attack."

Suddenly I got pain and weakness on my left leg however that subsided too and the next day it was gone. Now, I am much better, most of the symptoms have improved a lot but recently I have been experiencing a kind of a mild pain on my left leg, the same on which I got the "attack" it is not strong, there is no burning sensation and no weakness and sometimes I forget that I have it but still, I am afraid it may be CIDP or some kind of autoimmune diseases.

I am very nervous and sad, I never thought I would see myself in this situation.

Currently on the road to diagnosis after a double stranded dna blood test was off the chats. I’ve had difficultly breathing since April that has yet to be resolved. It doesn’t feel like it’s coming from my lungs or chest. But more so in my throat. But not in a way of throat closing like an allergic reaction.

Hi! I’m wondering if anyone has experience with this specific cocktail. My rheumatologist prescribed 10 mg methotrexate / week and 200 mg plaquenil / day. Neither have kicked in yet.

Today I went to urgent care because my knee blew up and I can’t bend it. They prescribed 40 mg prednisone for 3 days, 20 mg for 3 days.

Looking online I can see MTX and prednisone don’t seem to always play well together and the prednisone seems to usually be prescribed at much smaller doses. Has anyone been prescribed such a high dose of prednisone while on MTX for a flare? Appreciate any help!

Has anyone heard of an ANA pattern changing? Two years ago mine was nuclear, homogeneous.. but now it's nuclear, dense fine speckled. I'm not entirely sure what that means (other than DFS not being attributed to an AI illness), but I've never heard of the pattern changing 🤔

Is it possible that the first time it was missread? Or does that mean I've got a mixed pattern? I don't think that's the case because they haven't both shown up at the same time. Has anyone else seen this before or have any insight? I'm definitely going to ask my Rheumatologist because it's definitely an interesting finding 😂

I was diagnosed with ITP back in Nov 2023, when my platelets dropped to the 20s. After all the testing, the hematologist ruled out everything else, like lupus, and settled on ITP. 4 weeks of Prednisone helped my platelets but after stopping, they began dropping back into the 30s to 50s range.

I did a little research on my own and found out my hormonal acne medication, Spironolactone, could cause some blood issues. I had been taking it for ~4 years and my derm didn’t think it was the cause. Talked with my Hema, who agreed it was worth stopping. 5 week later and my platelets are at 117, with no other changes to lifestyle or meds! We’re still planning to keep an eye on things over the next few months, but I’m honestly so relieved.

Hi all. Recently, several different autoimmune-related blood work markers shot up for me, so my primary care doctor ordered some more comprehensive testing and referred me to a rheumatologist nearby.

The most concerning section of the blood work came back like this: ANCA SCREEN WITH REFLEX TO TITER: P-ANCA POSITIVE, P ANCA TITER: >1:640 H (high), MYELOPEROXIDASE ANTIBODY: 2.5 H (high), PROTEINASE-3 ANTIBODY: <1.0 (normal)

I did some research, and these results fit a typical profile for MPA (Microscopic Polyangitis). EGPA and GPA are possible but less likely due to me not having asthma and a lack of PR3 antibodies, respectively. A false positive is also possible, but I have a very high P-ANCA titer, which reduces that likelihood. I do seem to have some of the symptoms listed for MPA, however, admittedly, most of the symptoms are very generic (if I had a dollar for every disease that caused tingling in the hands and feet, I could retire).

Either way, I know the next step is to re-test these values and have a biopsy done to confirm the disease. These are steps my rheumatologist would need to take.

However, so far, the soonest I can get into a rheumatologist nearby is between 6 and 8 months from now (I live in western North Carolina right now). If I do have MPA, then early action is important due to the potential kidney damage (a sizeable percent lose a kidney within the first 5 years).

Does anyone have advice on what to do in cases like this where you need a rheumatologist appointment but probably can't afford to wait for 2/3rds of a year?

There are a few different options, like trying to see doctors with related specialities (a nephrologist would make the most sense in this case, probably, but dermatology is an option too technically), or trying to fly out of state to a major city and see a doctor there. I may also be able to get an appointment sooner on the eastern side of my state or in Atlanta, both of which may be drivable distances.

Any advice is appreciated, especially since I haven't found any information about how safe it would be to wait vs other options.

Hi guys besides sjogrens I now found out I have possibly polymytis. does anybody else have full body muscle fatigue where their whole body is heavy and what immune drugs if any have helped? I'm on 4 months of pred. with no help except for some of my strength is back at least in my legs

I've had severe fatigue and joint pain for a few years. I chalked it up to being tired taking care of 4 kids. A few weeks ago my left ankle blew up like a ballon with swelling. I saw my primary and they ruled out lymes disease, my X-ray was normal and negative for Dvt. Primary ran inflammation testing - my Ana came back 1:2560 homogenous all other antibodies are negative. I still have joint pain. My ankle is still swollen, but it has improved. I can't get out of bed in the morning until I take 800 mg of ibuprofen my back and my feet and my hands feel like stoned when I wake up. I have had a lupus like rash on my face for years been treated for rosacea in the past for it. I have Reynauds. My rheumatology appointment is August 6. I'm just wondering what to expect. I also have G.I. symptoms, frequent nausea, occasional vomiting, and very frequent loose mucousy stool. I also get frequent low grade fevers. Edit to add: just checked my temp and I'm 100.2f today.

I am doing a research project for school and would love to get as many responses as I can.

I need only responses from those who have been diagnosed with an autoimmune.

Hi all I have inflammation in my body somewhere is triggering it off and I'm not sure what. I had bloods done a couple months back which showed mild elevated inflammation marker at the time but docs wasn't conceded. Nearly a year now I've experienced upper dull back ache mainly in morning and kind of goes it's never painful I'm not sure if something there is inflamed but it also affects my hands and feet they will get extremely hot and slightly swell, I've noticed this whenever I'm walking, after eating or being in a hot place. It just comes and goes throughout the day. Any ideas what it can be thanks.

N D/x yet aside from POTS . Rhuem wanted me to take the naproxen for a month to see in my inflammation went down. I don't have a ton of swelling but symptoms for 3 years of joint issues. So he said let's do ultrasound and XRAys but it may be hard to see anything on them if you aren't actively swelling.
So wouldn't taking the naproxen lower my chances of seeing anything on the scans?

Should I hold off till after the scans?

I also notice when I eat gluten, tomato and dairy my symptoms get worse (no I don't have celiac) I am wondering if I should eat them to see if I can swell up for the ultrasound. Maybe that sounds crazy but I am going 3 years undiagnosed and I'm exhausted. ​

So I started getting hives all the time years ago. Then I had ankle and knee pain, plantar fasciitis that wouldn’t heal, shoulder tendonitis that wouldn’t heal and so much stiffness. After years of this plus being nauseous a lot and having hair loss and an itchy scalp I finally determined that they were likely all related. I mentioned this to my GP who asked if there was a family history, I mentioned my one cousin with Hashimotos and she ran blood work - all of which was fine except I had anemia. Upon my pleading she referred me to a Rheumatologist. After that I saw my other cousin who just got diagnosed with both RA and Lupus. I suspected mine was seronegative RA. The Rheumatologist quickly said he didn’t think it was rheumatoid arthritis but instead Fibromyalgia. Ugh Despite this he ran blood work and took X-rays of my hands, feet, and lower back. He upped my SSRI, prescribed me a sleep aid, and Meloxicam and sent me on my way saying he didn’t think the anti inflammatory would help. Well it did. My blood work is creeping back in and the results are confusing. My ANA is negative but my ANA 9 was at the top of the acceptable range for SSB. I am still anemic and I have low uric acid and slightly elevated CPK. What could this all mean. I want to prepare to advocate for myself in my follow up.

Thanks for reading.

I strongly suspect AIPD. My current diagnoses are hEDS, POTs, glaucoma, asthma, and migraines.

I have a ton of symptoms that mostly break down into 3 areas: chronic pain, GI, and allergy related.

Almost 3 years ago I became completely dermatagraphic after going off Ativan (a mast cell stabilizer). I’ve developed nearly every food intolerance that you can have.

I’ve been passed between specialists for a while now. Nothing is really ruled out but it’s clear something autoimmune is happening too. I have a very high speckled ANA with totally inconclusive follow up testing. Not t seems obvious.

I was on birth control for 10 years and when I went off, on top of my usual rashes, I had a very specific rash that looks exactly like the AIPD rash. That combined with dry skin, scalp, and anxiety.

I have one decent week a month where my skin calms down. It starts to act up before I ovulate and lasts until my period is over. I was irregular for basically 10 years and I’ve had 4 cycles on time now.

I’m desperately trying to explore every avenue because my family is ridden with confusing health issues. My mom died at 49 from respiratory issues but had only smoked in her early 20s and it just didn’t make a ton of sense how her body continued to gather that damage.

Does any of this sound familiar to you? It’s so weird.

Thank you in advance. ❤️

Hi all! I highly suspect AIPD but I’m going through the wringer with being passed from specialist to specialist.

I have a very high speckled pattern ANA (1:1280) and a host of symptoms. Existing diagnoses are hEDS, POTs, asthma, and glaucoma. That was a random one, I’m 28 with no family history.

My symptoms are all over the place but one thing that is consistent is that they’re far worse starting just before I ovulate and ending with my period.

I was on birth control for 10 years. I have migraines with aura so was on latently progesterone. My skin exploded into dermatagraphia about 2.5 years ago after going off Ativan (a mast cell stabilizer). My allergist thought MCAS or Mastocytosis for a while but my allergy labs are inconclusive. It isn’t ruled out but doesn’t seem like the “main” issue.

When I went off birth control, on top of my usual skin issues, I had this new rash that completely mimics the AIPD rash.

I’m wondering if my general dermatagraphia is actually really hormonal motivated because I’m not really dermatagraphic now for that week between the end of my period and the start of ovulation.

My RA has been normal, no significant signs of arthritis but I do struggle massively with widespread chronic pain. It’s hard to tell what’s hEDS and what could be inflammation from something else.

As of right now my autoimmune testing is inconclusive. I’m working on getting a rheumatologist but I expect to be passed around again between specialists.

I just can’t really tell between these issues if it’s autoimmune or mast cell dysfunction. Similar treatments anyway. I have to be on ceterizine daily and I haven’t explored other antihistamines yet because I’m hesitant to change too many things without having an explanation.

My other huge group of symptoms are GI related. I’m working with my GI to rule out SIBO etc but I have so many intolerances and allergies. I can’t eat gluten, wheat, eggs, lactose, peanuts, maple, and possible garlic and onion. I’m working on elimination diets now - especially around the autoimmune protocol diet.

Can anyone relate to some or all of this? It’s frustrating and strange. I’m just so afraid that there’s something important we’re missing. My mom was sick her entire life in strange and medically confusing ways and ultimately died at 49 so I’m doing everything that I can to not share that fate.

Thank you in advance. ❤️

Wondering generally. I know that the length of processing varies between tests and labs, so just some personal experiences are welcome. I had blood drawn yesterday for a “full autoimmune workup” but have not yet received a list of the tests and was too anxious to remember to request one before heading to the lab (I have a big bloodwork phobia). However, I’m still curious as I am in the middle of a “flare” (undiagnosed) and am anxiously waiting for results.

I only made it through 3 vials out of the 6 my PCP ordered before my blood pressure got so low from my vasovagal response that it stopped flowing through the needle. The phlebotomist’s wiggling of the needle sent me straight to syncope city, so I know I won’t receive the full results until I finish the rest of the blood work (god willing). I have tried everything on my end— super hydrated, nourished, relaxed, etc etc but each lab visit for the past 3 years has ended this way for me. Anyways— I appreciate any info regarding autoimmune labwork processing times or conquering bloodwork phobias!

Hi all. I’m new here, but not new to the autoimmune disease life. I finally got a diagnosis almost a year and a half ago and have been on numerous different meds and am finally getting to a seemingly stable-ish place.

So my first question is for those diagnosed as having UCTD….

Recently I got the courage to ask my rheumatologist (who, I think, is literally the best, I feel incredibly lucky) what the prognosis is for UCTD and he broke it down like this

*About 1/3rd of people seem to stay having a UCTD diagnosis

*About 1/3rd of people “progress” to a more defined autoimmune disease (lupus or sjogrens, etc)

*And about 1/3rd of people get better

So my question is, if you don’t mind sharing How long have you had UCTD and what was/is the outcome?

Background for me, if you’re interested, if not, skip to the end.

My (40 year old, female) symptoms started in very early 2022 after intense IVF, a rough pregnancy, traumatic birth, another round of IVF, tough pregnancy, and csection .. and having covid somewhere in there. Symptoms were crushing fatigue, joint pain (but actually tendon pain in feet, wrists, neck), it was agony to walk, bend, move, grab anything, constant sore throat with a raspy voice, shortness of breath on exertion and malar rash with crazy sun sensitivity. The fatigue was so crippling that as a stay at home mom, we had to hire a nanny to care for the kids and then later utilize daycare, not so I could work, but so that I could rest because I literally couldn’t stay awake and function (I realize we are so privileged to be able to do all of that). I went through a couple of pcps and a very shitty rheumatologist before I finally got to my current one who listened to me and took me serious. The meds that have done the best for me are CellCept (currently on) and low dose prednisone for 8 weeks really got my symptoms under control. I hate the side effects of prednisone but it’s like a miracle drug for my symptoms.

So what is your Uctd story? What do you think your prognosis will be? Has anyone’s Rheumatologist ever talked about prognosis for UCTD?

I’m actually hopeful mine will go away, which might sound crazy.

Do any of you ever feel just betrayed by your body? Especially when it feels like you are trying everything and nothing works at all. I have been diagnosed with Sjogrens - after 3 years of all healthcare professionals telling me nothing was wrong. I literally had to argue with a doctor to even run autoimmune labs. I was my own doctor and figured it out myself after trial and error mixed with a lot of my own research. I have also been experiencing severe hair loss. I am a 28F and it’s devastating. It’s so hard to stay positive and battle a disease that people can’t see. I find myself so angry at .. myself. Why am I like this? Why does my body hate my so much? I am struggling to find silver linings in any of this. Living in this foreign body is so exhausting. How do you cope? Any remission success stories? I feel so defeated.

Does anyone have experience with intermittent fasting and hashimotos? I've started doing intermittent fasting (mainly because of putting on weight, which was never an issue for me before despite 15 years of hashimotos) but I'm not sure if this is really advisable or whether it can increase stress and cortisol levels? I don't struggle with going a 16/8 intermittent fast, mainly because I have never been a breakfast person, but there seem to be contradicting opinions and with my MASSIVE hairless (alopecia) I'm wondering if it could be affecting this...Thoughts?

Since going to the hospital so often, I'm starting to panic with needles. I'm surprised at how much I've got to talk myself up. Any suggestions on dealing with it?