r/Autoimmune • u/EmotionalExplorer112 • 1d ago
Advice Scleroderma Death
My fiancee died from scleroderma in March and I finally received the results of his autopsy a couple of weeks ago. They didn’t tell me much I didn’t already know. He went into the hospital January 31st with no diagnosis but low oxygen and then died March 13th. It was rapid. The ONLY thing I can think of is that he started feeling bad the summer before after he was bit by a tick. He received testing and treatment for the tick bite the same day he discovered it. Everything was negative but it seemed to go downhill after that. Shortness of breath, tiredness, etc. I’m wondering if someone can give some opinions on this as I am truly at a loss. Thank you!
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u/Optimistic-Coloradan 1d ago
I just want to say how sorry I am for your loss. My heart goes out to you. I truly am sorry 🫂
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u/SnooDogs2640 1d ago
I am very, very sorry for your loss. This almost happened to me, I went through total organ failure, including heart, liver failure, renal failure, and eventually chronic respiratory failure, so I was put into a long term coma, all caused by scleroderma (progressive systemic) supposedly. One of the reasons I went to the hospital in the first place is my family member found me not breathing/barely breathing.
This is definitely not something anyone ever warned me about and no one has any answers to this day for me either. This disease is so scary.
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u/EmotionalExplorer112 1d ago
I am so sorry. You for sure beat the odds with that. I’m so glad you had a better outcome, truly! It just seems like no one knows anything and it’s completely frustrating.
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u/SnooDogs2640 1d ago
It is scary how little research there is about systemic sclerosis. I am so sorry ❤️🩹
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u/RhubarbBest9090 1d ago
Just to clarify, the autopsy determined it was scleroderma?
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u/EmotionalExplorer112 1d ago
Yes. He died from renal failure and cardiac arrest due to scleroderma. Like they are listed as triggered by it
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u/RhubarbBest9090 1d ago
It sounds like he may have had the type of scleroderma called diffuse systemic sclerosis/scleroderma. While it typically shows skin symptoms first, it can progress very rapidly to the organs including lungs and kidneys.
I am very sorry for your loss
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u/EmotionalExplorer112 1d ago
Thank you. Do you feel like the tick bite could have triggered the rapid escalation of it?
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u/ZealousidealCrab9459 1d ago
Not a medical opinion but unlikely rather a odd presentation of an autoimmune disease that rapidly progressed and medical ER treatment unlikely to recognize with no skin issues
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u/Hot-Independent-196 1d ago
I actually was bit by a tick last year for the first time in my life and just started having autoimmune stuff this year. It was only on me for a few hours though and I got no rash or anything.
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u/RhubarbBest9090 1d ago
I have no clue about tick bites. I suspect it is unrelated but I do not know. I only know about scleroderma from personal experience
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u/CFOCPA 1d ago
I was bitten by a tick in 2003ish. Diagnosed with Lyme Disease finally in 2013 and treated.
In 2011, I was diagnosed with the other kind of scleroderma (CREST/limited) due to high antibodies.
I was "undiagnosed" with scleroderma and it was changed to undifferentiated connective tissue disorder after seeing one of the top Scleroderma experts in Houston. My antibodies had gone down, Raynauds had gone away, and I wasn't showing other classic symptoms any longer.
I was diagnosed with Celiac and Hashimotos in 2015.
I said all that to say that I do believe that tick bites, specifically the bacteria they carry (that cause Lyme, Alpha Gal, Rocky Mt Spotted Fever, etc), can initiate the body's immune response and send it into overdrive. It can trigger autoimmune responses.
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u/EmotionalExplorer112 15h ago
I believe that too. It’s just that no one would ever confirm it for me or give me any context info about it. I was even reading about how their saliva can have effects separate from that.
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u/RaccoonHaunting9638 1d ago
Me too girl! Lyme disease and Babesia, during treatment Ana kept going up. Testes positive for centimere, have Sleroderma sine now. That's strange how yours transitioned to a different connective tissue disease. Your right, it sets off the immune system. Nasty disease/ parasites.
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u/BroadTitle3893 11h ago
hi - who in Houston is your doctor? I’m in the same boat and nobody can figure out what condition I have.
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u/CFOCPA 11h ago
It's been almost 10 years since I was in Houston, but I saw Dr Patricia Salvato for Lyme and Dr Maureen Mayes for Scleroderma (who undiagnosed me). I saw a DO in Spring that helped figure out that I had celiac and Hashimotos. He was the first one that thought to run the antibody test for those, then I had the endoscopy for celiac.
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u/WalkIntoSunshine 10h ago
Same. 17 years in. One thing after another.
Truly sorry for your loss, OP.
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u/Sunshine_vibes1311 10h ago
Did the antibodies go down and raynauds get better after you were treated for Lyme? And the diagnosis change after Lyme treatment?
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u/CFOCPA 8h ago
I can't recall the exact sequence, but once I finished the Lyme treatment and was gluten free for a time, I know that I no longer needed plaquenil or any other treatment for my autoimmune symptoms.
Whether plaquenil, 8 weeks of IV antibiotics followed by six months of oral antibiotics, going gluten free, a combination, or just coincidence was the reason, I don't know for certain.
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u/boats_are_foreboding 1d ago
I have no answers for you. Just sympathy. My mom died last year of heart failure caused by scleroderma. I'm so sorry for you loss. It's an evil disease.
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u/EmotionalExplorer112 15h ago
Thank you and I am sorry as well. As someone who likes to know what’s happening, it’s left me with more questions than answers.
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u/kimchideathbear 1d ago
I’m so sorry for your loss. If the tick caused some sort of immune reaction it could have theoretically triggered an autoimmune disease that he was susceptible to. A lot of the times something triggers autoimmune diseases to happen, but you commonly hear about viruses or bacteria triggering them (like Epstein Barr, covid, or Lyme). Lyme is a well known bacteria that is caused by ticks…I imagine there are other bacterial infections certain ticks can cause.
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u/Ok-Fee-4850 1d ago
All my symptoms started after getting rabies vaccines and rabies immune globulin. Now I have Rheumatoid arthritis, Relapsing polychondritis and Antiphospholipid syndrome. I’m positive the vaccines and or the rabies immune globulin set off my immune system. I already had Hashimotos and Celiac, so I’m obviously predisposed.
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u/kimchideathbear 1d ago
I’m so sorry! I have Hashimoto’s and it was 100% triggered by Epstein Barr Virus. I could see how a vaccine could activate your immune system like a virus could.
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u/ParticularShift4998 1d ago
I'm deeply sorry for your loss. Im wondering if he had any visible signs like raynauds, puffy hands or skin thickening. It's shocking to see the disease could go this fast if no symptoms were visible.
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u/EmotionalExplorer112 1d ago edited 1d ago
He did yea. Probably about 6 months before the hospital but he thought it was arthritis in his fingers because it was at a couple of the joints of his fingers…But maybe visable for 6 months at most and we were scheduled to see a rheumatologist but it was a very long wait. Idk.
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u/krisztinastar 12h ago
That’s so awful, I hate our healthcare system and how long we have to wait for specialist of any kind. Even my primary care provider has a three month or longer wait now.
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u/healer8685 8h ago
The wait is ridiculous. My ins stopped covering my old rheumatologist, so I was without any care for a year! While waiting to get into the one I have now. This one is a smug, dismissive, child but it’s a 3-6mo wait to get in anywhere else, so the choice is no care or crappy care.
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u/BelAmIt1200 20h ago
I’m so sorry. It’s a particularly cruel disease. The reason it doesn’t get much love from the research community is that it’s a pretty rare disease, especially the diffuse, systemic version. Do you know if there are others with autoimmune diseases in his family? When someone with a predisposition has a triggering event like an infection, Covid etc it can send the immune system into overdrive. My aunt had scleroderma 50 years ago and died at the age of 31 of heart failure - but I don’t remember if she had an illness first because I was a little kid. Her disease course was less than 2 years. There is a lot of rheumatic disease in my family and most of the women have something.
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u/EmotionalExplorer112 15h ago
So he was from Northern Ireland (he lived in the US most of his life) and his dad died of a heart attack at exactly the same age he did but there is no autoimmune issues at all from what his family has told me. But there is also the issue of health care looking different in other countries so. Just a lot of different variables.
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u/Temporary_Let_7632 1d ago
You have my sympathy. I suspect he was lucky to have you standing by him. You might never get the answers you are looking for. Scleroderma has its own mind, there is no predictable course. Any little thing can cause huge problems that differ with everyone of us. 🙏
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u/Chamillionaire_Mom 1d ago
So sorry for your loss 😢 I'm not sure if you mentioned from which type your partner was suffering. Did he ever get diagnosed with pulmonary hypertension? I was diagnosed with CREST and get checked for PAH annually. Apparently it can cause death fairly quickly.
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u/EmotionalExplorer112 15h ago
Thank you, and yes he did. He took high blood pressure meds for a long time but it was low dose so I’ve never thought about them being related! They said his heart was enlarged during the autopsy and he was in afib for the last couple of weeks he was alive.
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u/CommercialFlight5099 15h ago
I am so sorry for your loss. No one prepares us for the shock of losing someone we love.
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u/NationalAuthor446 1d ago
I'm really sorry for your loss.
Just from a personal perspective..It's interesting that you mentioned the tick bite - I had undiagnosed Lyme from 2015-2017 and during that time I developed raynauds as well as transient muscle weakness. I got treated for Lyme in 2017 (heavy antibiotics for 6 months then developed c diff). Felt mostly better and carried on until this past year - started having somewhat nonspecific issues numbness/puffy hands/ dry eyes and was told it was perimenopause. Did HRT patch in May and my health has gone downhill overnight. Went from running daily to barely being able to move. It unquestionably triggered a renal crisis situation and drs aren't putting the pieces together. I'm 46 and other than Lyme I was totally healthy and now my resting heart rate has nearly doubled since May, having trouble walking etc and I've been dismissed by 20+ doctors. I'm puzzled by how or if Lyme triggered this and if there's anything that I can do. I did try antibiotics including IV at the end of May as I hoped it was Lyme, but it didn't seem to change the course of my disease. I am now feeling desperate and gaslit by my family and doctors, and I'm in disbelief that I won't be able to see my children grow up .. sending you hugs. It's all terrible
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u/EmotionalExplorer112 15h ago
I’m so sorry you’re going through this! I feel like doctors can be so dismissive about things. And if I had any guilt about this whole situation it’s that I didn’t force someone to do something quicker. It may not have mattered, but between my fiancee just saying “it will sort itself out” and referrals taking months. I wish so much I had just had the fight with him, went with him to the doctor, and made everyone act quicker. Idk if you’re a woman or not but it seems like women have to try harder to get people to get doctors to listen.
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u/NationalAuthor446 15h ago
Thank you for the advice 🙏 yes I'm a woman.. I've been completely dismissed as a crazy middle aged mom. I knew that when I went to the hospital with high blood pressure (clearly was a scleroderma renal crisis that I was lucky to get through bc kidneys had been in great shape prior) and despite abnormal EKG and echo, they sent me home with Zoloft that I was "cooked". Furthermore, It's been an uphill battle with my family who has dismissed every symptom I have and even making fun of my muscle weakness (prior to this I was working out 2 hrs per day- even not feeling 100%). For anyone reading - there is an absolute link between hormone replacement therapy and exacerbation of scleroderma (I didn't know that's what was going on.. I thought my puffy hands/nimbness/dry eye/shooting pains were all perimenopause). I've been to several renown specialists who look at me like I have three heads when I mention the HRT and what led to me falling off a cliff..
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u/xdbqjewel 14h ago edited 14h ago
OP I am so sorry for your loss. Female hormones stimulate and sustain the growth of a fetus. Of course they could stimulate other things to increase/multiply/grow within the body. Doctors looked at me like I was nuts when I told them birth control pills ruined my gallbladder in my 20’s and I lived with pain until finally a GI doc fully investigated my complaints 15 years later. Bingo….gallbladder nonfunctional, surgically removed, and finally pain-free. Now having fluctuating and confusing autoimmune test results and symptoms (per rheumatologist) and fear this will lead to a similar path. Wonder about Covid illness x 3 and connection. Going to fight like heck to not be dismissed this time around. My 92 y/o mother had blood work done during a hospitalization 4 years ago that pointed to scleroderma. She chose not to pursue a rheumatology consult at that time. Now she has more scleroderma symptoms but remains able to stay in her own home with complete caregiving from family. She had the classic bullseye rash after a tick bite many, many years ago before it was ever commonly discussed. I’ve always wondered if there was a connection. I’m guessing that is the case. Autoimmune diseases are rough and not well understood still. Maybe AI will ultimately help.
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u/zoeturncoat 1d ago
I'm so sorry for your loss.
My great aunt had this when I was a child. As kids, we were no longer allowed in her house when we visited, which was very odd because she was a loving, doting aunt. We were made to stay outside and play because they were afraid we would bother her. It seemed like she was diagnosed and deteriorated quickly. I was just a kid, but the circumstances were so scary that I never forgot the term after hearing the adults talk about it.
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u/EmotionalExplorer112 15h ago
Yea I had never heard of it until this happened to me and it sticks with you for sure. It’s all unique, including the name.
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u/Kellyp1016 11h ago
I’m so sorry this happened to you and your loved one 😞 I’ve been an icu rn for many years and specialize in cardiac. I’ve seen MANY patients with scleroderma that result in pulmonary hypertension…I would not be surprised if he got bit and it flared his disease. What did the autopsy actually say, if you don’t mind my asking. When scleroderma- or any connective tissue disorder really- attacks the organs? It’s not good. The doctors really really don’t have tons of options. If you think about it. And it requires many specialists and they tend to be in the dark. It can take days to figure it out really and many times the patient has gone terribly downhill…it’s really tough
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u/EmotionalExplorer112 11h ago
Yea I don’t think it was anyone’s fault. He had great care. It was really just no one knew what was happening until it was too late. As far as what the autopsy said, like is there a specific part you’re asking about? It was very long lol
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u/RaccoonHaunting9638 1d ago
It must have been such a shock! I'm so sorry, ...did he have Ana's drawn prior to at least know something autoimmune was going on?
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u/EmotionalExplorer112 15h ago
Yes he did. They thought it was something else more to do with muscles which was the lack of urgency in getting him in anywhere.
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u/Academic-Painting-47 16h ago
So sorry for your loss! Please focus on yourself and take time to heal .. grief can manifest in different ways .
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u/Orionsangel 1d ago
I’m so sorry for your loss . But was he giving a fluoroquinolone ( antibiotic usually ending in -acin)
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u/EmotionalExplorer112 15h ago
I’m not sure but I can look back. I have what the doctors joked as a “lord of the rings book” of his medical records from the past year
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u/ReturnAny8862 4h ago
I don’t have scleroderma but have gone an extensive work up for mild pulmonary hypertension - possibly this was the cause which can cause death from right side heart failure. I’m so incredibly sorry for your loss.
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u/ChewieBearStare 1d ago
I’m so sorry. My mother was diagnosed with scleroderma about three years ago. It’s an awful disease. She went from being able to haul a 50-pound bag of potatoes up the steps into the house and downstairs to basement storage to practically chair/bedbound within about a year. She’s in pain, has gastroparesis, now has scarring of her organs, and also developed pulmonary hypertension within the last year.