I'm convinced it's autoimmunity

General Discussion
#1

I refuse to believe that PFS and PAS is anything but a wide spread systemic autoimmune disease. Every single side effect can be attributed to autoimmunity, even brain fog has roots in inflammation in the brain.

I think everyone should try the drug Methylprednisolone, it helped me AND a PFS sufferer. If this drug helps, then you could move on to the drug apremelist, which is helping me big time.

Apremilast also loweres TH-1, which finasteride raises. (I’ve read a thread on a other forum which describes how the raising of TH-1 is what triggers the wide spread autoimmunity).

I’m curious, has anyone here tried methylprednisolone or an equivalent? I had success with it, and am now having the same success with apremelist.

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#2

What are your improvements???

#3

No more PAS, as long as I’m on the meds

#4

@anonymous1968 took that same drug and got improvements as well. Very interesting. What kind of doctor did you see?

#5

I saw a derm who diagnosed me with Lichen Planopilaris after taking accutane, which is an autoimmune condition that causes scarring hairloss. Anyways, there wasn’t much she could do with this disease so nothing was prescribed other than a steroidal cream.

I ended up buying a bunch of different immunesuppressors/modulators/steroids, and I found the ones that cleared up both my hairloss + brainfog and depression were methylprednisolone, tofacitinib, and apremelist.

Methylprednisolone helped the most, but it can’t be taken long term. Which is why I am now on apremelist due to its good safety profile. It cleared up every side effect accutane has given me. I take 45mg a day. Apremilast also lowers TH-1, which fin/iso raises, so it makes sense that it will help. I went from losing 300 hairs a day to near zero in only a matter of weeks once starting apremelist

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#6

Thanks I’ll look into it. Was it easy to get a prescription?

#7

No prescription, I ordered myself from another Country. In America this drug costs like $4k with a prescription, so it’s not feasible unless ordering from Bangladesh or India

#8

Oh shit, okay I’ll have to find a reliable source then, didn’t realize how expensive it was.

#9

So you have to stay on this drug for life? Any way to switch to TH2 permanently again?

#10

Yes it is a “for life” medicaiton, used for psoriasis usually

#11

That’s my point of view too. And that’s why almost all solid recoveries comes from diets and lifestyles that looks for anti-inflammation in a systemic wise like paleo, no sugar, no toxins, fasts, hiit, meditation, cold showers, all of which, one by one, are anti-inflammatory.

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#12

It’s clear that there’s an inflammatory component to this. Reducing inflammation could possibly help alleviate some symptoms in some victims, but it’s certainly not the full picture here.

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#13

Ofc obv

#14

Not many other theories fully encapture 99% of PFS and PAS symptoms. Individually, near all of them can be seen in people with autoimmunity.

Btw I appreciate these discussions, it helps to further what we know. I’m just offering my own thoughts but I’m willing to change my beliefs. All I know, is that methylprednisolone and apremelist are helping me alot

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#15

I’m a firm believer of this theory myself (i.e. PFS/PAS are of autoimmune origin). My working hypothesis is that finesteride/accutane cause a shift in immune system leading to Th1 or Th2 dominance and either may lead to symptoms seen in PFSers/PASers through increased pro-inflammatory cytokines (e.g., TNF-a, IL-1b, IL-6, etc.).

I used to believe I’m Th2 dominant based on symptoms alone such as eczema and allegies. But now I think it’s more about pro-inflammatory cytokines vs. anti-inflammatory cytokines. Having too much pro-inflammatory cytokines from either Th1 or Th2 can lead to symptoms arising. This has led me to the digestive system since > 70% of the immune system is governed by the microbiome. Having a balanced microbiome can affect the immune sytem in a positive manner and lower inflammation throughout the body. I’ve done a microbiome analysis and came across several findings:

  • Low Bifidobacteria
  • Zero lactobacillus bacteria
  • High D-Lactate leading to D-lactic acidosis (i.e. inflammation)

Trialing with probiotics bacterial strains known to lower inflammation helped tremendously. I think getting FMT done from a super healthy donor is the ultimate cure.

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#16

Hello Gunnersup,

How long have you been suffering, what were your symptoms and can you describe your recovery in terms of symptoms improved and timeframe.

Thanks a lot man, appreciate it

I’ve had 0 improvement for 5.5 years now, would love to know your story.

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#17

For some time I was on mepacrine. This was prescribed to me by a derm who I saw after getting PAS. I took it for about 3 years, I think. Mepacrine has anti-inflammatory properties and is used in the treatment of drug-induced lupus. AKA systemic lupus. Mepacrine has been used on multiple different PAS patients in the UK.

If you are in the UK you will probably need to see a particular specialist derm in order to discuss having mepacrine treatment. PM me if you need more details. Your derm (if you are outside the UK) may also be able to email the UK specialist to gather some info. You might be able to get a mepacrine prescription through your local doctor if he or she gets appropriate info from the UK specialist. I believe that this approach has been used previously.

The mepacrine had no effects on the sexual aspects of PAS, for me. But it helped with energy levels and skin inflammation problems. The gains seemed to plateau off after the 3 years or so taking it. So after talking with my doctor we agreed that I stop. The gains have persisted and did not roll back.

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#18

Why don’t we focus on this theory ? Antibiotics cured my sexual sides for a week! There is a must be relation with that.

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#19

Plenty of pfs sufferer has leukocytes in their urine and mine as well, my friends who used accutane they have leukocytes in their urine and doctor diagnosed them to prostatitis , I have spoken Deca dick sufferer from my country and doctor diagnosed him prostatitis as well and it is not coincidence!

#20

I think that if someone in good faith studied this syndrome more closely it would not take long to realize that it is an autoimmune problem. The problem is that often, people who do research revolve around symptoms, so they have to do more stages and ask for more money to finance themselves. I too have started losing hair at very high speed, plus I have a dry, flaky and itchy scalp

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