Fucking psoriasis has wrecked my life. I got my first spot when I was 21, was covered scalp + chest to toe at 30 and I'm 43 now. Nothing worked, except for a ton of cortisone shots that my dermatologist would occasionally cut me off from.
I ran through a dozen doctors until recently I was prescribed Cosentyx and god damn it really works! I self inject two shots once a month, and from the knees up, I'm clear.
It's a miracle.
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.Upped my synthroid meds to 100mcg a day now. Started at 25mcg,50mcg,75mcg. I can't wait for all the blood work and dosage changes to be over with and feeling normal to begin.
Fuck Hashimoto's disease.
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.
Yeah you're right, I should have double checked before posting. I haven't been diagnosed with Hashimoto's disease just hypothyroidism.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?
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?
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.Anyone tried Prednisone? My doctor wants me to take a short course to get on top of my pain but I have heard it's horrible stuff...
Thanks! i managed to avoid it in the end, ended up on a course of Nefopam instead.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.
Awesome. It's definitely no fun to be on or to watch somebody else go through it.Thanks! i managed to avoid it in the end, ended up on a course of Nefopam instead.
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.
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.
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.
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).
my wife takes Armour for this instead of synthroid. It really helped her a ton.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).
I have MS also, buddy. The club isn't so rad, but I'm free to respond to any questions you might have!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.
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.
Hello fellow CeliacEra members. I find myself travelling more these days and depending where I go, it can be tough to find something to eat. For example, went to Japan for 2 weeks and lost like 10lbs simply because I was not eating. Anyone have any tips outside of the usual "bring your own stuff, learn the foreign words for wheat/gluten/etc"?
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.
Hello fellow CeliacEra members. I find myself travelling more these days and depending where I go, it can be tough to find something to eat. For example, went to Japan for 2 weeks and lost like 10lbs simply because I was not eating. Anyone have any tips outside of the usual "bring your own stuff, learn the foreign words for wheat/gluten/etc"?
Definitely. I've heard "You don't look sick/ill" enough to want to strangle the next person who says it to me.
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 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.
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.
Fucking psoriasis has wrecked my life. I got my first spot when I was 21, was covered scalp + chest to toe at 30 and I'm 43 now. Nothing worked, except for a ton of cortisone shots that my dermatologist would occasionally cut me off from.
I ran through a dozen doctors until recently I was prescribed Cosentyx and god damn it really works! I self inject two shots once a month, and from the knees up, I'm clear.
It's a miracle.
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.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.
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 have ulcerative colitis but it's the weakest form of the disease, highly localised in the last 20cm or so. I have it mainly under control via drugs and diet with only a major flare-up once or twice a year. Heart goes out to those with Crohns, can't imagine how hard that is to deal with.
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.
My wife was diagnosed with lupus and sjogrens this year. Her lupus meds concern me, with the potential semi-blindness. Literally none of her doctors seem concerned about it though.