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Autoimmune disease Era
- Thread starter Fiction
- Start date
Diagnosed with Ulcerative Colitis a little over a year ago. Had a deflating experience of seeing multiple GPs and attending A+E twice before anyone believed I was sick (ended up in hospital for a week). Had to stop medications because I got renal dysfunction with Mesalazine.
Despite not taking medications, I'm doing well (though not back to normal). My consultant feels my symptoms are "too good" to trial toxic medications like methotrexate so I'm just trucking along. I know I'm lucky considering how unpredictable UC's prognosis is, but I'd rather have no symptoms like before my diagnosis.
Despite not taking medications, I'm doing well (though not back to normal). My consultant feels my symptoms are "too good" to trial toxic medications like methotrexate so I'm just trucking along. I know I'm lucky considering how unpredictable UC's prognosis is, but I'd rather have no symptoms like before my diagnosis.
Well my best friend's mom is having heart failure and is just too weak to fight. She has progressive MS and has just slowly gotten worse and worse over the last 21 years. To be honest it's amazing she made it through all of the illnesses and close calls over the years. Her heart stopped last night but they revived her. They're saying if she lives she may never regain consciousness. Just horrible. That family does not deserve this especially with his wedding coming up in October. We were all hoping she could at least make it to that since her other son OD'd shortly before his wedding.
Just had to type it all out and vent a bit. Fuck MS
Just had to type it all out and vent a bit. Fuck MS
Yeah I have Psoriasis. The plaque variation. Basically immune system attacks the skin and causes red flares to come up which then plaque over and split and crack sometimes. Luckily I only have it mildly and the only visible place is a spot on my left hand.
Shit sucks though. The ointments don't work for me and actually make it spread. The only treatments that might are regular light therapy or shit that will more or less take out my immune system so I'll stick with a few sore patches.
Shit sucks though. The ointments don't work for me and actually make it spread. The only treatments that might are regular light therapy or shit that will more or less take out my immune system so I'll stick with a few sore patches.
Wow dude, so happy for you. Luckily I have very mild psoriasis but I will try to keep this in mind if it gets worse with time for me. Only 31 now.
On another note, seems I have MS, have done a few MRIs, lot's of visits. Things have been ambiguous for now but with recent symptoms things are heading more and more to a conclusion. Was terrified at first thinking this was a death sentence but appears to be manageable. Fuck...still doesn't feel good but honestly a firm diagnosis would almost be a weight off my shoulders in terms of explaining all these odd symptoms and sensations I have been having as of late.
As long as I don't go deaf/blind or die before 60 I...I think I'm happy with that. How foreign the notion of 'dying peacefully at an old age' feels to me the older I get.
Don't know what to expect from living with MS but I'm hopeful ERA, or that's what I keep telling myself. I'm sure the depression train looms around the corner as always but I'm sure it won't feel that much more different than before.
So after getting my DNA tested and seeing that I was high risk for celiac and going gluten free, I was noticing I was sometimes actually feeling better but then going straight back to feeling way worse whenever I ate beans or lentils. I thought maybe I wasn't soaking and rinsing them well enough, and I soaked some lentils for 24 hours that were looking just about ready to sprout, and I got even more feverish, tired, sore, and stiff after eating them than usual. Then I was talking to my mum and she wanted to know about my ankylosing spondylitis risk factors because my brother has it but never told anyone else in the family except her, and I do have HLA-B27 plus a bunch of other SNPs that increase the risk for it. Turns out starch is really bad for it, and soaking lentils causes them to form more resistant starch that feeds the bacteria in the gut that cause the autoimmune response. After going gluten free, the only other starches besides beans and lentils I had been eating were rice and potatoes, so I cut those out, and within days all the soreness/stiffness in my back, neck, hips, and wrists went away, my stomach pains went away, and the constant bloating I've had for the past 5 years is finally gone. Not sure if there's any real damage to my spine to be officially diagnosed, but the no-starch diet makes such a huge difference I'm just super glad to finally be feeling better.
I always forget that hypothyroidism is an autoimmune disease. It took a few years to get the right dosage for me. I'm up to 112mcg daily plus an extra half a pill on Sundays. Seems to be working fine.
I think it's only an autoimmune disease if it's from hashimoto disease? Other wise it's just a gland problem. I could be wrong.
How bad were your symptoms before treatment?
Yeah you're right, I should have double checked before posting. I haven't been diagnosed with Hashimoto's disease just hypothyroidism.
I didn't think my symptoms weren't too bad I just felt tiredness and some cold intolerance. I was seeing an endocrinologist for an unrelated problem and he felt that my tsh level was too high. Since being on synthroid I have noticed a remarkable difference in my energy level. I guess I got used to the fatigue before I started treatment.
I think something like 95% of all people with hypothyroidism have Hashimoto's which is why people use them interchangably.
My wife has systemic and discoid lupus. She was very close to kidney failure when her doctor put her on Prednisone. It saved her life, though it did have annoying side effects. Despite the fact that she prefers holistic medicine, she said she'd take it again in a life or death situation.
Thanks! i managed to avoid it in the end, ended up on a course of Nefopam instead.
Awesome. It's definitely no fun to be on or to watch somebody else go through it.
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Second infusion tomorrow. Hopefully it doesn't smack me down as hard this time and I can go to work on Tuesday. I think I felt better this month, but the effects likely won't be immediately noticeable until two months or so in.
Fiction out of curiosity, are you female? My wife had some blood work done and had some high titers for the SSA antibody but hasn't really manifested any systemic symptoms of sjogrens yet (we're gonna retest but I'm not expecting different results). Was wondering if any women with sjogrens here had children and what their experiences were in terms of prenatal healthcare. I'm aware of SSA having an increased risk for congenital heart block and neonatal lupus.
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Yes, and I'm a mother of three. The first pregnancy went okay other than having to do an emergency c-sections. The other three were extremely awful, one ended in a misscarrage, my youngest son had me in constant agony because of the way the sat (my uterus fell and twisted, had no idea that could happen, my cervix ended up underneath my belly button) and my last pregnancy, my daughter, ended two months early after nearly spending the whole time on bed rest. (She's fine btw)
I am not sure if my fucked anatomy was the only factor or if it was the sjogrens. Even if it was, I was in a rural area where doctors where awful and no one would have understood anyhow.
Does she have dental problems? My sjogrens diagnosis finally gave me the answer as to why my teeth just started crumbling at a young age.
Had flares of eczema -- that suspiciously looks like psoriasis at times -- for about five years, then a chance visit to an old doctor of mine at a walk-in clinic gave me my life back. It's literally just hydrocortisone and fusidic acid mixed together.
After my success with it, I looked up its effectiveness to eczema and sure enough it has like a 80-90% success rate but no one knows why. Somehow the mixture of both together, applied frequently, is far more effective than its constituent parts.
After my success with it, I looked up its effectiveness to eczema and sure enough it has like a 80-90% success rate but no one knows why. Somehow the mixture of both together, applied frequently, is far more effective than its constituent parts.
Sounds rough, sorry to hear about your difficulty but it sounds like you have three healthy children which is great. She had this strange rash which I thought may have been a vasculitis but they pretty much ruled them out so I suggested a rheumatologist because she does also have Hashimotos. Blood work was a bit strange to me because other than thyroid function, everything was negative except the SSA titers (SLE markers, RF, etc). No other clinical symptoms of sjogrens but she's in her late 20s so it's possible those may manifest with age.
Her dentition is fine although she has some degenerative problem with the TMJ - not sure if it's autoimmune in nature she's had it since childhood. Anyway thank you for sharing your experiences - I'm not sure what our future holds but it's nice to hear from others. Please keep us updated with your journey.
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I'm glad to hear she doesn't have a lot of symptoms currently. One of the interesting things my doctors have told me about sjogrens is that it can cause false negatives for any autoimmune disease. When I was first diagnosed with RA, my RF blood test levels were in the 400s. Now that I also have sjogrens, I'll test negative for RA 3 out of 5 blood tests. Its extremely weird.
Hashimoto's here, I'm on 200mcg a day. I was diagnosed around 20 years ago and started with 50mcg, but it slowly keeps getting worse. I manage to make it through the day, but even with medication I still have most of the symptoms (they're just reduced).
Ugh, this doesn't fill me with much hope to ever feel normal again....
:(
my wife takes Armour for this instead of synthroid. It really helped her a ton.
I have UC. I currently take Immuran everyday and one shot a month of Symponi. It took me 3 years to get into remission which I've maintained for 4 years so far. During that 3 years, I lost 65lbs (looked great btw) and was using the bathroom about 30 times a day. Sometimes, I wouldn't leave the toleit for over an hour at a time. At my worse, I was taking over 20 pills a day.
I just got diagnosed with Undifferentiated Connective Tissue Disease finally, after dealing with chronic pain, inflammation, skin rashes and joint pains for years. Basically I am in a hallway and I have two doors to open. One is Lupus and the other is something else. My Rheumatologist believes I will evolve into Lupus eventually. So I will be having regular blood work every few months to check if I test for a positive for Lupus.
Eventually got my MS diagnosis, but I'm optimistic - seems we caught it early on due to an unrelated MRI being done a few years back catching my first lesion. Don't have that many symptoms, mostly anxiety and some muscle twitching/tingling sensation.
My neurologist said there are some great drugs out there that and that MS treatments have made massive strides just the past few years. He thinks it's a 'milder' version of it.
I'm very fortunate that cost of treatment probably won't be an issue but I'm terrified of losing my hearing since I only hear on one side since birth. At least I don't need to walk around wondering what's wrong with me, past few years have been a bit tough not knowing.
Anyways...any words of wisdom Era? Do's/Don't's? I want to get in shape and shit but now I'm suddenly terrified of even hitting the gym.
Any input would help alot :), am 30 years old.
My neurologist said there are some great drugs out there that and that MS treatments have made massive strides just the past few years. He thinks it's a 'milder' version of it.
I'm very fortunate that cost of treatment probably won't be an issue but I'm terrified of losing my hearing since I only hear on one side since birth. At least I don't need to walk around wondering what's wrong with me, past few years have been a bit tough not knowing.
Anyways...any words of wisdom Era? Do's/Don't's? I want to get in shape and shit but now I'm suddenly terrified of even hitting the gym.
Any input would help alot :), am 30 years old.
Bumping this in case anyone has any reassuring input of sorts...got a follow-up come 11th to chat about treatment - even if my neurologist sounds positive I would be lying if I said I wasn't a little bit scared.
I'm not an expert beyond your specialist, but I offer you hugs and listening if you need those.
I have MS also, buddy. The club isn't so rad, but I'm free to respond to any questions you might have!
If you're male, it's best to do one of the aggressive medications. It's a bit scary to jump into one of the meds because they all have concerning side effects, but I will say that I'm on Tysabri and it is working great for me. As long as you are negative on your JC virus status, you're good. JC negative is 1:10,000 chance of getting PML. Basically like... the equivalent to the chance of dying from getting struck by lightning that hit someone else first.
Another possible medication is ocrevus which I hear is very good. Also you get less infusions, but it's relatively new. I'm 32 now and I was diagnosed with MS when I hit 30 as well when I had my first really bad relapse. Sometimes things will feel bad, but just know that if you're RRMS, your symptoms aren't always permanent and you can always recover over time. The symptoms I had with my first relapse are mostly all gone, and I'm very happy about that.
Was diagnosed with MS last September. Had a massive relapse in July that caused tingling in my feet and hands. I still haven't recovered fully. I am on Tysabri which is a monthly infusion. It is one of the strongest drugs on the market. I still suffer from tingling in my right hand, hotness in my feet, and some tingling in the face here and there but things are slowing getting better. I take Vitamin D and fish oil supplements. I held off exercising when I was first diagnosed because I suffered from pins and needle pain whenever my body temperature would rise but I can exercise now. I usually do some indoor biking for 20 minutes and hit the weights. Some studies suggest that large muscle mass and higher testosterone levels may help to combat MS.
Ultimately everyone is different with different symptoms and the drugs we are one treat us differently. I have had no problems with Tysabri but it does come with the long risk of a brain infection but it's the strongest drug on the market along with Ocrevus which may increase the risk to cancer. There is also Hematopoietic stem cell transplantation but this is not approved in the US and most European countries. It's still under clinical trials. You have to undergo chemotherapy to wipe out your immune system and your stem cells build you a new one. There are countries that do it like Mexico and Russia but those are private clinics and can costs tens of thousands to do.
Ultimately you'll find what works for you. I won't say it will be easy because it certainly hasn't for me. But with good treatment and taking care of your health, you can live a mostly normal life.
I have Hashimotos disease which has definitely ruined my quality of life. Every single day is a challenge and I still somehow get through uni and raising my one year old.
Invisible illnesses suck as no one believes you.
Invisible illnesses suck as no one believes you.
Definitely. I've heard "You don't look sick/ill" enough to want to strangle the next person who says it to me.
Bringing your own stuff and/or going to a market to buy your own ingredients are pretty much your only options, I'm afraid. Going to a restaurant with foreign word flash cards still presents a big risk for accidental glutening (via hidden ingredients or cross contamination). If you're in a big city, you might be able to find a dedicated gluten free restaurant though - I've heard that there are a couple of dedicated GF cafes in Tokyo.
Even my own parents. Yes I know I've only been awake for two hours but I am already exhausted. It isn't laziness at all. It's just miserable having no one to talk to about it.
I feel you 100% on that. Not being able to talk to family about something like this is also stressful. The only response I get is "Talk to god. Pray." etc. They all think that I can pray this away, and some have insisted that I still have MS because I haven't asked god to take care of it. I'm not really a religious person so I keep my words to myself, but it makes me feel really... alone. Fatigue is a big thing with MS as well, and I end up laying down a fair bit - it's rough for sure.
I have the same thing - raising a 4 year old alone. It is such a terrible illness to bare.
Are you on treatment yet? It took me 4 doctors and 4 years to get medicated/properly diagnosed and im still trying to find the right dosage.
Thank you very much for your stories. I have so many questions and I don't even know where to start. Perhaps step 1 is to hear what my neurologist come Wednesday. This might be a silly naive thing to say but I 'just' want to be able to live to retirement age at least and have that journey not be filled with constant pain day in day out. My biggest fear, even greater than dying, is going blind AND deaf...
First off congrats! I've got it mildly and I have a few questions if that's ok? It sounds like you have a much more severe case than me where I've got a patch on my knee and leg, my hand and starting on my ear but I figure this will likely spread in time. Did you have an estimated coverage from your doc at all? Deciding when the spread is enough for me to look at other treatments has always been a concern. The ointments actually make it worse for me too so they're a no go.
One thing I'm really curious about. How severe have the side effects been? Did you notice any increase in colds etc?
Yeah there were a couple of good places in Tokyo (shout out to GF Cafe Littlebird). As I am travelling more these days, it is a constant worry but I've managed so far.
Hey fellas! Autoimmune hepatitis here. Not sure if it's just me who is lucky or that AI hepatitis is one of the gentler AI diseases, but I had a rather good 15-year run with it. I take medicine, of course, and do regular blood tests to monitor my liver, but otherwise it has never caused me any noticeable trouble. I got to be sensible about what I eat and how much I drink, and to keep my weight under control, but these are generally sensible things to do, so overall the disease has never affected me much (so far, there's always a chance that one day it might just get worse all of a sudden, lets hope not).
Good luck to everyone here though! I can only begin to imagine how draining more "noticeable" AI diseases can be.
Good luck to everyone here though! I can only begin to imagine how draining more "noticeable" AI diseases can be.
Well, just ran another set of (more comprehensive for autoimmune disorders) and my rheumatologist is pretty sure I have Sjogren's. Just over the past week I've been getting dry mouth. It feels like my tongue is changing day by day (is it even my own tongue anymore?). This dry mouth has also led to be have GERD where I feel like someone's strangling me or me being full for over eating, but it's constant and unrelenting. I'll probably have to find some OTC medication to reduce my acid levels because I can't salivate enough. It's just amazing how fast it has progressed. A week before I was fine, and in a matter of a few days my current QoL went dramatically downhill,
I'm extremely apprehensive about where I'll be headed since I'm 29. Plus, the rheumatologist costs $250 per visit to see, I'm too poor (even with insurance).
I'm extremely apprehensive about where I'll be headed since I'm 29. Plus, the rheumatologist costs $250 per visit to see, I'm too poor (even with insurance).
Ask your doctor what their self-pay rates are for visits.
Mine charges $265 to health insurance, of which I have to pay half, or $80 for self-pay (aka no insurance/choose not to use insurance).
Getting my joints drained + treatment is $900 billed to insurance per joint, or $90 if I self-pay.
There are also programs that will help you pay for many kinds of medication, be sure to let your doctor know you are on limited income and struggle to pay and they should get you the forms.
Same disease, same high degree of localization. I count myself very lucky given some of the shit I've known people to have to deal with. Hell, I had IBS throughout adolescence and that was a nightmare: there's no way to deal with that problem in school and not be humiliated so I just missed a lot of school.
I have hypothyroidism which I suspect was caused by Hashimoto's as well as mixed connective tissue disease and I became ill in my teens so I'm an unusual case. I swear my MCTD is the cause for my multiple lung collapses which I suffered from for about 2 and a half years before I got proper medication (Prednisone), but nobody believes me. My skin has also become extremely sensitive to sunlight most likely due to both illness and the meds I take which makes it difficult to do... well anything outside really. I barely managed to finish high school (I was very lucky to get into a home instruction program) and now I have no idea how I will get past this illness and pursue post-secondary education and a career. It's been 5 years now and even though I've made progress, there is still so much progress I need to make in order to achieve my goals in life, and it's very depressing and difficult to accept. Even the smallest tasks are extremely difficult for me and no medication other than prednisone has helped give me more energy. My heart goes out to everyone reading this who are also suffering, I hope you will all feel better soon.
She should be tested by an ophthalmologist twice a year. Her rheumatologist should set up the referrals. They will be able to detect any macular degeneration long before she will be able to notice it herself, and takes steps if necessary.
That's why her doctors don't worry about it. With proper care, it's not worth worrying about.
She should also be given an amsler grid that she should check every day.
Honestly, with the medications people with autoimmune diseases take, going blind is one of the least concerning side effects, and it is one the doctors can find early and treat effectively.
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Yeah, her rheumatologist had her go see an ophthalmologist who said given how early it is for her, she doesn't need to see her for her eyes again until April next year. I think because she's only been on the meds for like 2 months, nobody is concerned. But I am concerned about the 5 to 10 years from now. Like I don't know what to do if she goes blindish.
Hey guys! So I've developed Psoriasis after last Christmas. Was pretty bad until I figured out what it was finally, then ointments have helped a lot.
I just had a question, the biggest pain in the ass so far has been the flaking in my hair. It affect the front rim of my hairline pretty bad so now I get tons of crap falling out anytime I brush it and it's disgusting. I tried the recommended 250$ steroid shampoo and that helped a bit, but obviously that's not very sustainable. Was wondering if anyone had any tips!
I just had a question, the biggest pain in the ass so far has been the flaking in my hair. It affect the front rim of my hairline pretty bad so now I get tons of crap falling out anytime I brush it and it's disgusting. I tried the recommended 250$ steroid shampoo and that helped a bit, but obviously that's not very sustainable. Was wondering if anyone had any tips!