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[Media]

Hi gaf.

It's been a long struggle for me, with doctor's vacillating between lupus and RA, but this week they finally landed on a firm diagnosis of not one but two freaking autoimmune diseases: RA and sjogrens syndrome. RA is just painful but sjogrens is fucking gnarly. Basically attacks any part of your body that produces moisture so that's basically everything. Had a two week period recently where they thought I had a stroke because I couldn't remember anything and was seeing double, but it turns out it was attacking the lining of the cells in my brain. Yay.

Anyone else have to deal with shit like this? I have to take all kinds of pills and shots now to completely kill my immune system.

 

[Clockwork5]

No. but I will someday.

My mom had rheumatic fever and my grandmother had MS.

My father passed away last week due to Humira, a drug used to fight RA, causing him to be unable to fight an infection.

It's in the genes for me.

 

[Jag]

Celiac runs in my side of the family. My 13 year old son was recently diagnosed and it's been really tough. My 2 cousins and his cousin has it too. High risk of developing diabetes too.

 

[Lionheart1827]

I had Idiopathic Thrombocytopenia Purpura when I was 16. Its mostly a low blood platelet count and your body is destroying them thinking they are foreign. There isn't really a known cause and there is no cure. I was on prednisone for years and slowly weened off of it when my platelet counts weren't going down anymore.

You could literally tap my arm and in a little bit a small bruise would form.

 

[Media]

No. but I will someday.

My mom had rheumatic fever and my grandmother had MS.

My father passed away last week due to Humira, a drug used to fight RA, causing him to be unable to fight an infection.

It's in the genes for me.

I'm on Humira. Woe. Also hydroxychloroquine and lufludomide.

Doctors told me the second I feel like I am getting sick I need to call them

So sorry for your loss.

My mom has MS and my oldest son has thankfully the tamest autoimmune disease in vitiligo. At least it won't harm him other than socially.

 

[gatling]

Man it can be devastating. I hope you can find relief in some way.

I have chrons. Been in remission for years thankfully. Even after a resection and infusion meds 10 years ago. Soy, vegetable oil, and iceburg lettuce will wreck me but i can demolish spicy foods, dairy, and caffeine though. I try hard to stay on top of my health and its done wonders but you never know when it'll sneak up again.

 

[Ambient80]

I nearly lost both of my legs to an ultra rare autoimmune vasculitis. Yay!!

Doing fine now, but it can return at any point.

 

[Ragnarok]

ulcerative colitis here :wave:

I hope things get better for you. Sounds terrible.

 

[kirblar]

Quercitin's an anti-inflammatory that helps a ton for me w/ my allergies. No idea if it would even be helpful w/ something as severe as your illness, but might be worth trying.

I have a grandparent w/ RA and I'm really hoping I can dodge the auto-immune bullet there. We actually had an issue w/ a botched test that caused them to think I had Hashimoto's for a week.

 

[TheMan]

dx'd with jeuvenile rheumatoid arthritis kid, later with lupus. Taking plaquenil now but I've been on a number of meds throughout the years. No flares since 2003 though, so that's nice.

 

[Common Knowledge]

Have had Crohn's for 7 years now. Diagnosed in late high school and went through years of struggles throughout early college that made my first two years there a miserable experience. Finally I was put on Remicade injections and I am now in a full remission with barely any struggles anymore. Figuring out what medications are right for me was such a pain in the ass. I went from several different pills to Humira and finally to Remicade. I'll never forget how fucking miserable I was in life during early college.

 

[Leeness]

Nothing yet but my mom was just diagnosed with rheumatoid arthritis so I'm guessing it's in the cards at some point.

I'm sorry for you all and what you have to go through. Disease and sickness suck

 

[carda114]

Technically not, but maybe one day. I'm a type 2 diabetic, which is apparently being discussed with regards to classification. Type 1 diabetes is considered an autoimmune disorder because the body attacks insulin-producing cells.

 

[Chocolate & Vanilla]

My Auto-immune disease - Guillain-Barré Syndrome - was acute, caused total paralysis as it attacked my nervous system and shut down my lungs and kidneys. I spent 6 weeks in intensive care.

Although I don't have the disease itself anymore and I'm generally healthy, I'm still dealing with the fallout from it 7 years later

The damage to my nervous system means my muscle no longer grows or repairs properly, I'm hyper sensitive to heat and cold touch, painfully so in fact, and I've just had multiple surgeries because, due to the afore mentioned muscle issues, my joints are crumbling away.

Auto-immune diseases suck. But even with all the above, I feel lucky not to have had a chronic one.

 

[Clockwork5]

I'm on Humira. Woe. Also hydroxychloroquine and lufludomide.

Doctors told me the second I feel like I am getting sick I need to call them

So sorry for your loss.

My mom has MS and my oldest son has thankfully the tamest autoimmune disease in vitiligo. At least it won't harm him other than socially.

Thank you. Humira basically erased his symptoms for the two years he was on it but he was bad about hiding illness so the infection was running its course by the time he was hospitalized.

Good luck with everything.

 

[EverythingShiny]

My grandfather had rheumatoid arthritis, my sister has lupus and they're not sure about me. I worked with a rheumatologist for a while when I was having really awful fatigue/joint pain, but I didn't have a lot of the symptoms for lupus and I'm positive for the ANA most usually associated with Sjogren's. I have trouble with dry eyes and skin, so who knows.

I've had to take methotrexate in the past and that was awful. I haven't had a flare up in quite some time (neither, thankfully, has my sister) and other than fatigue, lead a pretty normal life so I'm grateful for that.

I'm sorry, Media. I hope the meds work and that you start feeling better soon. <3

 

[RatskyWatsky]

Celiac reporting in. Got sick last night from what was supposed to be gluten free pasta (Great Value brand), but I guess it got cross contaminated in a shared production facility or something. Sucks but I deal. Will avoid that brand in the future for sure though.

 

[Hana-Bi]

Have Crohn. Got it 8 years ago and was in full remission for four years with Azathioprine. Tried it for one year without Azathioprine but it came back last month... Got it under control now again but I'll have to take Aza for years now again...

 

[Rei no Otaku]

Nothing serious. I have vitilaigo, but it spread so much that my skin is almost all one color again. So now most people don't even notice it.

 

[Zakalwe]

I have Ulcerative colitis. It's rough sometimes, but I'm used to it and generally keep myself well. I'm on quite a lot of drug right now though, and I'm fairly sure they're partially to blame for the anxiety and depression I've struggled with over the last few years.

You have my sympathy and empathy OP, stuff like this can be difficult to live with.

 

[Kuro]

Eosinophilic Esophagitis. Have to eat real slow cause it makes it really hard to swallow food.
Could probably go on that 6 food elim diet but man that shit is hard.

 

[kowhai]

Diagnosed with Crohn's about 6 years ago. Over that time I've spent over a year in hospital and had 9 surgeries. It's been tough and difficult to come to terms with.

 

[slider]

I don't know much about them but, without wanting to sound like an asshole, they're fascinating.

Realise that they range in scale and impact and I can't begin to imagine how people think about having an autoimmune disease.

Be as well as you can GAF.

 

[Ambient80]

Have Crohn. Got it 8 years ago and was in full remission for four years with Azathioprine. Tried it for one year without Azathioprine but it came back last month... Got it under control now again but I'll have to take Aza for years now again...

Yeah I took Azathioprone for my vasculitis. Worked like a charm, actually.

I was also on super high dose steroids for about four months which made me absolutely miserable. Gained crazy weight, depressed as hell, was an asshole to everyone lol

 

[ESBL]

I have plaque psoriasis, its more annoying than actually affecting my life.

 

[SiegfriedFM]

I have vasculitis. I suddenly got fevers and sharp pain in elbows, hands and feet. Since I've had problems with aches, it took some time for me to seek help, but after a month or so of sick days almost every other day, I went to the emergency room (my feet had started swelling up) and they ran some tests. Then I got remitted to the rheumatology department and got prescribed cortisone. That was two years ago. After a few weeks, the symptoms were basically gone and I got a range of medicines to alleviate side effects from the cortisone. I had six weeks sickness leave and rested up, but I've been able to work normally since.

I'm still taking cortisone, but much less than before. I took a few rounds of Mabthera, but I'm on methotrexate now. Since they found it and started treatment early, I haven't had any kidney damage, and I haven't really had any relapse to that serious pain or fever. Now we're just monitoring for side effects. Aside from gaining weight from the cortisone, I feel generally fine. Hopefully it will eventually go away, but I have no idea when that's going to be.

I'm so grateful for the Swedish system though. I've paid about $200-250 per year in medicines and doctor treatments before the cost limits kicked in. It's such a relief knowing that it won't ruin me, on top of everything else.

 

[Dr. Feel Good]

Type 1 diabetic since I was 12.

 

[Jorok Goldblade]

Ulcerative colitis. Diagnosed 13 years ago.

 

[pixelation]

My Auto-immune disease - Guillain-Barré Syndrome - was acute, caused total paralysis as it attacked my nervous system and shut down my lungs and kidneys. I spent 6 weeks in intensive care.

Although I don't have the disease itself anymore and I'm generally healthy, I'm still dealing with the fallout from it 7 years later

The damage to my nervous system means my muscle no longer grows or repairs properly, I'm hyper sensitive to heat and cold touch, painfully so in fact, and I've just had multiple surgeries because, due to the afore mentioned muscle issues, my joints are crumbling away.

Auto-immune diseases suck. But even with all the above, I feel lucky not to have had a chronic one.

That sucks man, glad that you made it through though. My Dad died of the same disease.

 

[btrboyev]

I have UC. Currently taking Entyvio infusions. 5th one coming up in a few weeks. No relief as of yet.

 

[MayMay]

Hashimoto thyroiditis.

Could be worse, I guess. Not a fan of the thought of having to take these stupid pills for the rest of my life tho wew.

 

[ArkkAngel007]

Type 1 diabetic since I was 12.

Same here. I might have to get some tests done soon to determine brain damage from frequent hypoglycemic episodes (very active and demanding line of work).

 

[Chocolate & Vanilla]

That sucks man, glad that you made it through though. My Dad died of the same disease.

Cheers. One more hip op this year and then hopefully that's it for a good while.

Sorry about your Dad. It's such a bizarre disease and seems to progress at completely different speeds and to completely different extremes in every person that has it.

 

[riotous]

I have an undetermined autoimmune disease; but it also might be symptoms of my cluster headaches. Been to multiple specialists, and it's always "you definitely have an auto-immune disease, it may or may not go away." Thanks!

My eyeballs randomly feel incredibly painful and swollen, and my face breaks out in a puffy red rash of sorts. Sometimes my ear turns bright red and swells to far greater than it's normal size. I look like a completely different person and am in excruciating pain and discomfort, nausea and my heart rate goes through the roof. I've been diagnosed with cluster headaches as well as chronic migraines but the physical symptoms on my face can't fully be explained. I did have a horrible strep throat infection that resulted in rheumatic fever a decade ago, and that may or may not be related.

I take a heavy sedative every night that also helps ease nerve pain, and other than that take way too much ibuprofen than I should for the inflammation. A year ago I hurt my back, I have a herniated disc.. and it's kind of added a big "fuck you" to the mix. I can barely walk sometimes unless I eat a handful of ibuprofen and I really shouldn't take it for that as I need it for the once or twice a week headaches/inflammation I get.

Managed to completely stop taking opiates for all the pain a year and a half ago, but it gets harder and harder not to consider that route again.

 

[Earendil]

I have fibromyalgia which, although annoying, does not compare with what some of you other folks have to deal with. Living in Florida has made my symptoms better compared to Colorado, so that's been quite the improvement.

 

[Media]

I have an undetermined autoimmune disease; but it also might be symptoms of my cluster headaches. Been to multiple specialists, and it's always "you definitely have an auto-immune disease, it may or may not go away." Thanks!

My eyeballs randomly feel incredibly painful and swollen, and my face breaks out in a puffy red rash of sorts. Sometimes my ear turns bright red and swells to far greater than it's normal size. I look like a completely different person and am in excruciating pain and discomfort, nausea and my heart rate goes through the roof. I've been diagnosed with cluster headaches as well as chronic migraines but the physical symptoms on my face can't fully be explained. I did have a horrible strep throat infection that resulted in rheumatic fever a decade ago, and that may or may not be related.

I take a heavy sedative every night that also helps ease nerve pain, and other than that take way too much ibuprofen than I should for the inflammation. A year ago I hurt my back, I have a herniated disc.. and it's kind of added a big "fuck you" to the mix. I can barely walk sometimes unless I eat a handful of ibuprofen and I really shouldn't take it for that as I need it for the once or twice a week headaches/inflammation I get.

Managed to completely stop taking opiates for all the pain a year and a half ago, but it gets harder and harder not to consider that route again.

Damn I'm sorry man.

I think the pain is the worst part of most autoimmune diseases. I used to be on opiates but moved to an area that's more reluctant to prescribe them, and it's like...what is the worst that can happen, I get addicted? I'm going to be in pain for the rest of my life. Until they make better strides in pain control or I'm suddenly cured...I'm a 35 year old mother of three that can barely function most days because of the pain. I'm even taking part in a study on how that affects my kids

 

[Seirith]

I have RA and was diagnosed in my first year of grad school. It is for now well controlled on Plaquenil and Methotrexate. I am lucky that I have no side effects from either.

Besides RA I also have CRPS( Complex Regional Pain Syndrome) in my left hand. It's not auto immune but is much worse than RA for me.

 

[catmincer]

Psoriasis and Psoriatic arthritis. All I can say is I am super glad Humira exists.

 

[Suikoguy]

No. but I will someday.

My mom had rheumatic fever and my grandmother had MS.

My father passed away last week due to Humira, a drug used to fight RA, causing him to be unable to fight an infection.

It's in the genes for me.

I know how you feel.

My mom has MS and Addison's.
So far, I only have Vitiligo, but it's always in the back of my mind that i'll get a second one.

Because, Fun fact:
If you get one, you are far more likely than average to get another!
Wait, that's not fun at all

I have an undetermined autoimmune disease; but it also might be symptoms of my cluster headaches. Been to multiple specialists, and it's always "you definitely have an auto-immune disease, it may or may not go away." Thanks!

My eyeballs randomly feel incredibly painful and swollen, and my face breaks out in a puffy red rash of sorts. Sometimes my ear turns bright red and swells to far greater than it's normal size. I look like a completely different person and am in excruciating pain and discomfort, nausea and my heart rate goes through the roof. I've been diagnosed with cluster headaches as well as chronic migraines but the physical symptoms on my face can't fully be explained. I did have a horrible strep throat infection that resulted in rheumatic fever a decade ago, and that may or may not be related.

I take a heavy sedative every night that also helps ease nerve pain, and other than that take way too much ibuprofen than I should for the inflammation. A year ago I hurt my back, I have a herniated disc.. and it's kind of added a big "fuck you" to the mix. I can barely walk sometimes unless I eat a handful of ibuprofen and I really shouldn't take it for that as I need it for the once or twice a week headaches/inflammation I get.

Managed to completely stop taking opiates for all the pain a year and a half ago, but it gets harder and harder not to consider that route again.

It's frustrating that Opiates don't work for nerve pain.
My mom is going to try Marijuana as there is significant evidence it helps with nerve pain, and it's available in FL now.
Have you been to only local specialists, or have you considered going to somewhere like the Mayo Clinic?

Type 1 diabetic since I was 12.

There is a good chance that will be "curable" within the next 10 or so years. So, have some hope at least

 

[jb1234]

I have fibromyalgia which, although annoying, does not compare with what some of you other folks have to deal with. Living in Florida has made my symptoms better compared to Colorado, so that's been quite the improvement.

Like most chronic diseases, fibromyalgia comes in many different brands and flavors. Some people are more or less functional and others are mostly bedridden, like myself. Mine has also gotten steadily worse over time.

 

[riotous]

It's frustrating that Opiates don't work for nerve pain.
My mom is going to try Marijuana as there is significant evidence it helps with nerve pain, and it's available in FL now.
Have you been to only local specialists, or have you considered going to somewhere like the Mayo Clinic?

I've been to some pretty reputable doctors as we have some pretty advanced research hospitals here in Seattle and good health care in general, and 8-9 years ago I had a cancer scare (blood cell counts way off) which prompted my insurance to give the go ahead for a number of specialist visits, and that eventually led to the original "unknown autoimmune issue" diagnosis (which I've heard a few times now from different specialists). Allergy doctors, pain doctors, my family doctor from when I was a kid.. tried just about everything and that includes marijuana. Unfortunately pot being a vasodilator seems to cause more issues than the pain relief and nausea relief solves for me.

Opiates definitely helped some times, and not others. One of the problems I've had seeing doctors is I have about 3 different distinct types of pain/inflammation attacks that happen. It took a long time for me to recognize the distinctions; sometimes it starts with neck pain, other times on the top of my head, and other times starts at my eyeballs.

Another wrench in the diagnosis is that I was severely beaten about 12 years ago which involved being kicked in the head a number of times, and that has played a part in it all. LOL, I've just had a rough decade medically. At the age of 25 I had never had a prescription filed in my name, never missed a day of work or school due to illness. How things have changes! Now I use pretty much all of my PTO on sick days and still suffer through days of work where I have to deal with a migraine or cluster headache.

 

[Arkanius]

I have Chron disease. My brother was also diagnosed with it recently.

I'm pretty healthy though. I basically do infleximab every 8 weeks, and have no intolerance to food.

 

[Arkanius]

EDIT: Double Post

 

[Go_Ly_Dow]

I'm positive for Lupus, SLE and Schrodingers, since this Feb, but supposedly the diseases haven't manifested yet as I lack the symptoms.

What do you guys suppose were the triggers for your diseases? Any triggers you or the doctors can indentify.

 

[thewaffles]

Type 1 Diabetic checking in. Only diagnosed for a year. But man I realize how relatively lucky I am considering all the other auto-immunes out there.

 

[AbortedWalrusFetus]

My mom has Scleroderma, lupus, reynaulds, steroid induced cardiomyopathy (from treatment), and a small dossier of other related disorders. I don't have an autoimmune disorder but grew up with my mom having it almost literally my entire life. They are frightening, frustrating conditions. It's bizarre growing up with doctors telling you that your mother will not live to see most of your life accomplishments. She pays about $400 a month in copays for medications. She'd have been dead for years if not for medicare. Thankfully she has really fought and survived through the years. Good luck op.

 

[SliceSabre]

Graves' disease learned I had it when I went into the Navy and got sick and the doctors figured out of had it.

Currently being treated for it but quite honestly it doesn't affect me in my daily life except for the medicine I have to take. For the rest of my life.

 

[btrboyev]

Graves' disease learned I had it when I went into the Navy and got sick and the doctors figured out of had it.

Currently being treated for it but quite honestly it doesn't affect me in my daily life except for the medicine I have to take. For the rest of my life.

I had it too(hyperthyroidism). It went away for me, so there is always hope my friend. I was told I would have to take medicine forever too.

 

[Mossybrew]

Yup, Crohn's disease, diagnosed a bit over three years ago. Thankfully I haven't had any major symptoms for about a year and a half, but it's one of those things that can resurface any time for seemingly no reason.

 

[ezrarh]

I have psoriasis. Am taking humira for it which clears up most of it but it's still around. I've found that diet has caused flareups - can't seem pin it down to whether it's alcohol, dairy, or excessive sugar but when I go away from those things, it helps but life sucks without those things.