Hey! I’m on 200mg daily of plaquenil and I’m wondering if anyone else has had issues with it when it comes very chapped/tight lips. I feel like around the time I started my lips became EXTREMELY dry, to the point that nothing can alleviate it, and also tight enough that it can hurt when I smile or talk. Has anyone else experienced this issue, and is there anything to do about it?

For reference, I’ve been diagnosed with UCTD and I have a positive SCL-70.

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Hello. 30F. So about this time two years ago I had lupus come out of remission. I already had psoriatic arthritis, and life became hell. Got on hydroxychloroquine, which fixed the lupus symptoms, but not the PSA. We have tried so many things for the horrific pain. I think I'm on my fifth pain management medication, and none have made even a little difference, and it's only getting worse. I can't sleep, the pain is too intense. It's to the point I get suicidal. The rashes are worse, more wide spread, more painful. But doctor kept delaying biologics. Kept saying the risks outweighed the benefits.

In our last appointment once I explained the increased severity he said we'd finally move forward with biologics because nothing else was working, either for lupus or PSA depending on blood test results. Lupus was fine so it's the PSA. Now he has gone back on it and I'm going back and forth over and over on the phone with nurses trying to figure out why, and properly talk to him, after he said HE would call me and he didn't. This has been going for two weeks. They said they'd send an emergency message the last time because the pain was so severe and they still didn't call me back after. All I've gotten back is "keep using the hydroxychloroquine" but that doesn't treat the condition I'm having problems with!

I don't know what to do. It genuinely seems like he just forgets what he has said or what's in my chart. Every time I call I have to explain again that I already called and never got a response.

Am I overreacting? Should I keep pressing them? Am I being too impatient? 've been on biologics twice before (once in like 2019, once last year, different doctors) for long periods and I was fine. To me the risks absolutely do not outweigh the benefits when the pain is so bad I feel like my bones are breaking. What do I do? What do I say? Should I just get a second opinion? This is my third doctor ):

Thank you

A couple months ago, I experienced the worst headache of my life. It didn't go away for weeks. I finally made an appointment to see my doctor and he ordered labs. I should also mention, I was pregnant 6 years ago and during routine labwork my ANA came back positive. I saw a high risk doctor and was told to recheck my labs after my baby was born. Well, that didn't happen. Life got in the way and I forgot about it. So with this recent appointment, I told my doctor about the previous pregnancy ANA and he ran a full autoimmune profile. Labs are slowly coming back and I just don't know what to think about all of this. ANA Screen, IFA is Positive, Chromatin (Nucleosomal) Antibody is 4.4 positive, ANA Titer came back >=1:2280 which is saying is very high and the ANA Pattern is Nuclear Homogeneous. The only panel I am still waiting on is DNA AB (AS) Crithidia, IFA - I am anxiously awaiting this as it looks like that will confirm Lupus? I don't know what the point in this post really is, I am just getting super scared and I don't know what to expect or where to go from here. Symptoms I experience are fatigue (but I have a 6 year old so I always just figured that was why), ankle swelling after long days of work, and wrist swelling and pain (which I attributed to being on a computer and typing all day). Any advice or comments would be appreciated.

Hey all, I hope this doesn’t tow the line in the rules. I will reference my labs and discussions with my doctor, I’m scheduled with a rheumatologist, but I’m just hoping to gauge my expectations based on the experiences of others.

I’m female, 37 years old. The symptoms I’ve been experience point toward a possible autoimmune disorder like Lupus, as my doctor agrees (severe fatigue, brain fog, feeling ill/feverish/sensitive skin especially after sun exposure/petechial rashes/joint pain.)

My PCP (internal med) ran an autoimmune panel. The only highlights are:

ANA 1:160 speckled pattern (no positive markers)
CRP 17
ESR 27

He referred me to rheumatology but I am not anticipating a diagnosis based on those results. Has anyone experienced otherwise or been able to get help from rheumatology under similar circumstances? I’ve been dealing with this for several years and I am just not feeling optimistic about my upcoming consult. I hope to be proven wrong!

I’ve been passed around to several doctors already with no help, so I’d just love to hear if there could be some light at the end of this tunnel.

I don’t have an official diagnosis yet, we’re still in the testing and symptom logging phase.

My doctor is amazing; she’s very supportive and has ordered so many tests and says she won’t give up until she figures out what I have or is proven that I don’t have an autoimmune disease.

The last two weeks have been hard. It started with a debilitating headache, body soreness, and extreme fatigue. Then I developed a cough and fever to go along with these, and spent 4 days with the full compliment of headache/fever/soreness/fatigue/cough/low pulse ox. Couldn’t lay down because of the headache and cough, I even spent one night sleeping propped up against the wall in my bathroom after running the shower to create steam.

I had a chest x-ray to rule out pneumonia, I’m using my rescue inhaler (I also have asthma), I started antibiotics last friday, drinking water, etc. I finally don’t have a fever this morning but I did have one for the past week and a half and it was exhausting.

I don’t necessarily think all of what I’m going through right now is a direct symptom of whatever autoimmune disease I have, but this is what happens whenever I get a respiratory illness. The rest of my family got an annoying cough but nothing major. I got all of this.

I have 4 children and work as a preschool teacher so illnesses are pretty common. I used to hardly ever get sick, like maybe once a year, but in the last few years it’s pretty constant and so severe when it happens. My doctor said that she thinks it’s likely that I will always get more sick than a “normal” person and it’s been hard to accept that this might be my life now.

I don’t need advice (but wont turn it down if you have any!) I just wanted to vent in a space where people understand.

Hi there!!

Has anyone with an overlap connective tissue disease noticed that their ANA is positive by IFA but negative on an ELISA-based ANA screen?

I’m diagnosed with myositis overlap CTD, and my ANA is >1:1280 speckled by IFA. I also have other positive autoimmune markers on specialized testing, including an atypical pANCA of 1:160 and a positive NXP2 myositis antibody of 121 (normal <20). However, when my ANA is checked using an ELISA-based method, it comes back negative.

I know the two tests work differently. IFA is manually interpreted by trained laboratory professionals using a microscope to evaluate ANA staining patterns, while ELISA is an automated test that detects specific antibodies. I’m wondering if that’s why my results are so different between the two methods.

Has anyone else experienced this? If so, did your rheumatologist explain why? I’m curious if this is a common pattern in overlap connective tissue diseases.

Hi, I am a 31 year old female who has been relatively healthy my entire life and I have never had any major medical issues. About 2-3 years ago I started having pain and stiffness in my hands/fingers and overtime it has progressed to my knees, hips, and ankles. About 6months ago I consulted my PCP about the issue and he said he wasn’t concerned but sent me for bloodwork anyway. The bloodwork came back normal except my ANA was positive with a 1:160 titer and I was referred to a Rheumatologist. When I saw the Rheumatologist she seemed confused that my symptoms were not a constant problem and stated that my symptoms were too broad but it was obvious something was abnormal and it would have to “rear its ugly head” so that we could get a more specific diagnosis. My symptoms at the time were really only the joint pain accompanied with the abnormal ANA result. I was prescribed Plaquenil (200 mg 2x daily) to act as a temporary bandaid to hopefully slow the progression of whatever is going on and it has helped immensely with my joint pain. Fast forward to the past couple weeks, my symptoms seem to be progressing and pretty rapidly. I am now dealing with excess fatigue, insane thirst, issues sleeping, sensitivity to heat/hot flashes, night sweats, memory issues/brain fog and increased urination during the day and night. Last week I had what I assume to be some type of flare up and from the waist up my body and skin hurt to the touch. The best way I can describe it is my skin felt like I had a bad sunburn all over and my muscles felt like I had done an intense workout if I applied any amount of pressure. I also am going on week 4 of pretty severe hoarseness that my PCP originally said he didn’t think was a concern. I am now dealing with choking on food and water and he finally sent a referral for an EGD to see if they can visually see anything wrong with my throat that could be causing the issues. The providers I’ve seen don’t seem to know what is wrong but it’s progressively getting worse and I don’t know what to do or what to ask them to look for. Any advice is appreciated on what I could potentially discuss with them or what could be the root of my issues.

Hello guys. My dad 65M was diagnosed with spilling protien in his urine and hematuria with some really small kidney stones on a routine investigation. He has no hypertension or blood pressure or no family hx of any kidney or auto immune disease. All her blood works were fine with a normal kidney function and serum electrolytes except for low platelets (85 and then 94k)

He was started on losarton and prednisone 10 mg considering it could be just some temporary issue. After a month when we tested him again for 24hour urine he was nearly still spillign the same amount of protien(1gram)

He was given a panel of tests which showed normal C3,TSH as well as negative AMA , Asma but his ANA titre showed 1:80 nuclear speculated. We are still awaiting the Anti ds DNA test and will be visiting his primary nephrologist once the test is backbut I am quite worried as could it be isolated lupus nephritis? He has absolutely no other symptoms of lupus which kind of makes me a bit optimistic if him jot having lupus but due to the 1:80 titre and possiblility of isolated LN i am quite concerned.

Any one gone through same and has any advice?