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

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101–110 of 144 posts

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

#101
post #38

Earlier quoted context omitted.

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?

I assume they're referring to biologics, another name for monoclonal antibodies such as adalimumab (Humira), infliximab (Remicade), etanercept (Enbrel), ustekinumab (Stelara), etc.

Most of these are TFA inhibitors, but there are some newer ones that target other things, such as ixekizumab (Taltz) and brodalumab (Siliq), both approved very recently.

Common to biologics is that they're all fairly new, so their long-time safety is not established. They are more precisely targeted than immune-system therapies such as methotrexate (a chemotherapy drug that also works on psoriasis), but they do interfere with your immune system in scary ways. There's evidence that they increase the risk of cancer as well as other diseases. Brodalumab has been associated with an elevated risk of suicidal ideation and behavior (!), so there's that.

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

#102
post #98
post #93

Earlier quoted context omitted.

If you do take ibuprofen, be aware that you probably need to also take extra B vitamins. It is known to deplete a specific B vitamin. A quick google suggests it is B12, but I suggest you do some research of your own to confirm that. I took daily ibuprofen for years. It is commonly prescribed for my condition. My need for B vitamins plummeted when I finally got off of it.

It looks like it lowers levels of folic acid, which is vitamin B9: http://pennstatehershey.adam.com/content.aspx?productId=107&... . Looking at the other articles for B vitamins on ADAM, it seems that only folic acid is affected.

Good work!

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

#103
post #16

To best honest it sounds more like CFS than autoimmunity. The article says that it turned out not to be thyroid, and the autoimmune diagnosis was just presumed. Generally when you have those symptoms it is termed CFS, but people don't like CFS because they incorrectly think it means "all in your head" or "you're not really ill". CFS tends to be triggered by stress (as it was in this case), and sufferers tend to lead…

Chronic fatigue can be caused by undiagnosed organic illnesses. Personal anecdote: I had CFS for several years, and when the diagnosis (an easily treatable genetic condition) was eventually made, and treatment taken, I was better within a few months.

Was the diagnosis hemochromatosis?

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

#104
post #38

Earlier quoted context omitted.

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?

Methotrexate is the most commonly used drug in Scandinavia when cortisones, protopic etc doesn't work. They have lot of people having these kind of issues. Good thing with methotrexate is it tends to work and it's cheap. Obviously consult your doctor before making any decision.

Humira etc is very expensive but works for lot of people that other drugs don't.

http://www.webmd.com/drugs/2/drug-3441/methotrexate-anti-rhe... https://en.wikipedia.org/wiki/Methotrexate

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

#105
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 was also diagnosed with Psoriasis around five years back. I went through the same cycle of meeting various doctors and therapists (Alternative medicine). The symptoms would go away while taking medicines but would come back once I stopped. So I made a decision that I will do whatever it takes to keep me generally healthy. I eat what my body loves to eat. I experimented with various diets but finally settled on this philosophy that worked for me. If you listen closely, the body tells us what it likes to have at any moment. Then I took to exercise and running. I run a marathon or at-least a half-marathon every year. I know that this disease may never be healed but 'am happy to keep it under control. I take it in a positive manner that this disease keeps me on my toes to exercise and eat right. Thanks and good luck!

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

#106
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…

The good news is that while psoriasis currently has no known cure and is a life-long disease, the available treatments are generally quite effective.

As with anything, the success of your treatment depends a lot on your doctor. The best way for a psoriasis patient to get treatment is to find a good dermatologist. Don't settle for a doctor until you've found one that seems super qualified. Even then, make sure you ask lots of questions and explore every avenue; doctors just aren't very good at giving you the full picture. For example, it took years before I knew about nail pitting, psoriatic arthritis, etc.; I had to do my own research, since the doctors didn't inform me. Doctors will also often prescribe crappy meds that frustrate the patient, like greasy ointments and foam (the "new" Enstilar spray foam is awful), or creams for the scalp (which is nonsense, use a liquid solution or a spray!). A disease this complex really should come with a manual.

As I keep telling people, the most important part of psoriasis is getting it under control. It's not a life-threatening disease, it's just an icky one that impacts your sense of normalcy and well-being. (Although psoriatic arthritis multiplies everything.) Figuring out how to get it under control — to basically become asymptomatic — is almost the entire battle. It's a disease that for the most part can be kept in check. Since psoriasis is triggered by stress more than anything, staying asymptomatic is a positive feedback loop.

Getting psoriasis under control involves (1) doing an initial intensive treatment to get inflammation down, (2) trying out different regimes, (3) sticking to a fixed routine (topicals, etc.), (3) adjusting until you get last two right. Sticking to a routine also means not skipping topicals when you don't feel like doing it. You'll be rewarded with nice, smooth skin.

For most people, #1 means using a potent corticosteroid. Immune-suppressants (including biologics, which target the immune system responses that trigger psoriasis) are a last-resort kind of deal for people with large amounts of affected skin, since they come with potentially major side effects.

There's no avoiding steroids, but there are a few things that also help:

* Calcipotriene (a synthetic vitamin D3 derivative). Not very potent, but safe. It takes weeks to show any improvement, but it works with long-term, daily use.

* Coal tar works great for a lot of people. Shampoo is particularly great for scalp psoriasis. Comes in both weaker OTC ointments and shampoos (e.g. Neutrogena T/Gel or Pinetarsol), and also a prescription-strength formula that you can rub into the scalp and wear for a week (under a shower cap), and which can clear up the psoriasis completely for months.

* Topical immune-suppressants such as tacrilimus (Protopic) are great for tricky areas like skin folds. Less side effects than steroids.

* UV phototherapy. While a lot of people respond positively, and it's very cheap, it is of limited usefulness, as you quickly reach your maximum dosage, and the effects don't necessarily last that long.

By the way, psoriasis is very often misdiagnosed. To other reading this, if you think you might have psoriasis, get a biopsy to make sure. Doctors are pretty terrible at diagnosing it correctly. Lots of people walk around thinking they have psoriasis when they actually have seborrheic dermatitis, or vice versa.

Lastly, there's a good community on Reddit for this: https://www.reddit.com/r/psoriasis.

Good luck!

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

#107

Earlier quoted context omitted.

Do you know the names of any of these?

I assume they're referring to biologics, another name for monoclonal antibodies such as adalimumab (Humira), infliximab (Remicade), etanercept (Enbrel), ustekinumab (Stelara), etc. Most of these are TFA inhibitors, but there are some newer ones that target other things, such as ixekizumab (Taltz) and brodalumab (Siliq), both approved very recently. Common to biologics is that they're all fairly new, so their long-tim…

> There's evidence that they increase the risk of cancer as well as other diseases

All drugs can have negative effects, but in the end it comes down to what's the risk/reward ratio. If someone is in constant pain and barely can do anything it really doesn't matter if you die 5 or 20 years down the road to cancer when you get x years to live somewhat normal life. Life in extreme suffering can be worse than death. This is based on personal experience.

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

#108
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…

+1 on the Quantified Self concept. I lost a daughter to cancer. The disease has something like a 5% survival rate. We were at a top tier children's hospital with a doctor who handled more cases of this disease in clinic than anyone else in the country. Still most of the time nobody knew what the fuck was going on. So I started a log in a spiral bound notebook. In 15 minute increments we jotted done notes of what was happening and her reactions. In doing so we could clearly prove to the staff which medicines she was reacting too and how. This greatly improved her quality of life, which was all we could hope for.

I have severe pain from several back injuries that has taken me years to recover from. Following a similar approach of quantified self has enabled me to discover what the triggers for my pain are and how to manage them physically and medicinally.

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

#109
I have Crohn's Disease. It's a struggle. Some folks have recommended getting a fecal transplant. It is supposed to add bacteria to your gut that Crohn's patients don't have. This stops the autoimmune response. Supposedly. Not sure if this sort of treatment is approved by the FDA.

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

#110

My wife is going through a version of this right now. We are scheduled to see a specialist at Stanford in a few weeks. Just last March we hiked to Patagonia and camped there. We hiked for about 8km to the camp place. She even carried more weight on her back than I did. But this last December when we went snowshoeing in the Canadian Rockies, she had to stop every few minutes from fatigue. I helped carried half of her…

My brother went through a Stem Cell Transplant for CIDP. He went from being nearly wheelchair bound to being able to run. Look into Dr. Burt from Northwestern in Chicago for a domestic way to get this done.
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