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I had an autoimmune disease, then the disease had me (2013)

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Re: I had an autoimmune disease, then the disease had me (2013)

#71
post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

I encourage you to try RAW medical cannabis. The precursors in the raw plant to the cannabinoids that get you high, such as THC, are the acid form, such as THCA. They don't get you high but have been very pain relieving for my wife's constant inflammation. The heated form (where THCA is converted to THC) is also helpful, but id you really dont want to be high, find strains that are low in THC/A and richer in e.g. CBD/A Also it can be done at a low temperature in the oven or in a canning jar on the stove (called decarboxylation).

I don't know your pain but it's been super helpful for my wife.

Re: I had an autoimmune disease, then the disease had me (2013)

#72
I feel bad for the people who have told of their issues and suffering in the comments here. But I have to say that every time I see a health article on HN (or in the news) as well as the comments about individual cases it draws me in and gets me down. No benefit. I only get anxiety as a result. I have found this to be more the case in the past several years with what I call (as only one example) the 'cancer industrial complex'. Constant barrage of info discussing cancer, cures, studies, drugs, particular people's problems. A benefit to those suffering or those helping people who suffer for sure. But I would argue to everyone else potentially harmful and very hard to get away from.

Back in the day this wasn't the case. There wasn't this barrage of info. You only knew of a handful of cases in your small circle of friends or family. It didn't seem like danger was lurking around every corner. Anyone else feel the same way?

Re: I had an autoimmune disease, then the disease had me (2013)

#73
It may not work for everyone but for my partner's autoimmune disease (Lupus) eating raw cannabis has been very stabilizing. The raw form has the acid form of the cannabinoids, which are responsible for the anti-inflammatory qualities associated with cannabis.

The heated form is also useful, but thr key has been to incluse lots of raw form.

Re: I had an autoimmune disease, then the disease had me (2013)

#74
post #57

I have an autoimmune disease; type 1.5 diabetes, formally called LADA (Latent Autoimmune Diabetes in Adults). I'm insulin dependent, like type 1, but the disease didn't manifest until my 40s, like type 2. I suffer from moderately severe diabetic foot pain. My doctor prescribed some medication that provided marginal, at best, relief. About a year ago, I had a persistent fever. I took some aspirin to knock down the fev…

I'd say talk to your doctor that you are taking certain medicine just to make sure the doctor knows about it. Beware of placebo effect (which might be good in your case).

Re: I had an autoimmune disease, then the disease had me (2013)

#76
post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

Yup. Plaque psoriasis here. Started on my elbows when i was 18ish. Now it's pretty much everywhere, but hands and face are all that's visible in public.

The treatment ladder is pretty interesting. UVb is step one, i always felt a little silly about going in to the dermatologist for a tan. That had no noticable effect for me, but it does help some people.

The topical cremes are fairly effective for me, but it's tough to get pharmacies to give me enough. They show up with a little tube, and i have to explain that's like 3 days worth - covering the whole body 2x a day takes, like, a lot. I need nine more and i'll see you in a month buddy. And of course they thin the skin. I try not to overtreat, no creme if there's no redness. but i'm sure there are spots with consequences.

The generalized immune suppressants are pretty scary to me, 20 years of methotrexate seems untenable. I could see perhaps a short term 3 months ish run to get it under control, then touch up with the cremes.

I like the idea of the biologics. humera, stelara and enbril, are the big ones i think. narrowly targeting just the inflammation response part of my immune system seems a little less risky than the broad suppression of cancer drugs.

I dunno. it sucks. I try to use the lightest touch to get by in the hope that something better will come along, without doing too much damage right now.

Talk to your derm, of course, but for me just a really good moisturizing creme a few times a day will soften up those hard patches so they don't crack so easy. I try to keep up with the vanity treatments, hands and face, to banish the redness all the time. I tend to not worry about the rest until it gets pretty itchy - moisturizer helps keep the itching down quite a bit for me.

Anyway, i go through phases. I'm sure this summer i'll try to hit everything hard for two solid months. Maybe i can get back to a casual maintenance mode.

it sucks. you're not alone. I'm not exactly in your same boat, i'm just hoping it does not spread to my joints. At that point i think i'd have to go with a cancer drug or injectable. hopefully there will be better drugs, or the current drugs will be better understood, before that's an issue.

It sucks it can't be fixed. My least effort to make this tolerable probably isn't ideal, i'm probably over weighting the risk of side effects and under weighting the damage done to my skin by just letting things go. but you know, it's a thing. it's a thing i can't really do much about so i try not to let it dominate my life. There have been times when it really controlled my thoughts and fears. Those times suck, you'll get through them.

Re: I had an autoimmune disease, then the disease had me (2013)

#77
post #72

I feel bad for the people who have told of their issues and suffering in the comments here. But I have to say that every time I see a health article on HN (or in the news) as well as the comments about individual cases it draws me in and gets me down. No benefit. I only get anxiety as a result. I have found this to be more the case in the past several years with what I call (as only one example) the 'cancer industria…

Yeah. I actually have a lot of stuff in common with the author of the article. (low platelet count, low thyroid function, low vitamin d, low iron, (also high uric acid)) And my aunt has rheumatoid arthritis. I've also always had a serious peanut allergy + a few other minor ones.

Except that, I feel fine. I'm 34, I do lots of cycling and hiking, and work on making computer games in the evenings. Reading stuff like this definitely stimulates the hypochondriac in me. Also I feel so bad for the people posting the awful symptoms they suffer. Considering I'm ok atm I should just not worry about it I think. Anyway, bit rambling, but my 2 cents.

ps. I only found out about the above details when I went to doctor for 1st time in like a decade for dizziness. Turned out there was a natural gas leak in the apartment I was renting at the time which definitely seemed to be causing it.

Re: I had an autoimmune disease, then the disease had me (2013)

#78
post #38
post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

Some good news. There are dozens of new drug approved by FDA addressing the auto immune illness. The problem is they are expensive, thousands of dollars per shot for every couple weeks. Hopefully the competition will drive the cost down.

Do you know the names of any of these?

Re: I had an autoimmune disease, then the disease had me (2013)

#79
I don't understand the pain or struggles with such a disease. I am sorry for those who suffer. But research in the field is becoming very exciting. Right now tons of data from patient's antibody and T-cell receptor repertoires are becoming available. The field is going through a big data moment. Suddenly large number of antibody and T-cell receptors are being sequenced. Hopefully smart people will be able to identify disease causing sequences

Data Fountain: https://clients.adaptivebiotech.com/immuneaccess

Re: I had an autoimmune disease, then the disease had me (2013)

#80

Near complete ablation of all immune cells in circulation is proving to be pretty effective as a way to put autoimmunity into long-lasting remission. It can be done with high dose immunosuppressants at the cost of much the same symptoms as cancer chemotherapy - these are harsh drugs - plus a few day period of vulnerability to infection while the immune system rebuilds. But the cures are demonstrated, for type 1 diabe…

> But the cures are demonstrated, for type 1 diabetes and multiple sclerosis over the past five to ten years.

Are you talking about the "Burt" full immune system reboot method (repeated by Snarski + Li)? I've never seen any follow-up studies on the participants, how are they doing after 5-10 years (meaning still insulin independence?)

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