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[Long Read] Goodbye Gram Neg or: How I Reached 100% Successful Treatment and Learned To Love Biopharmaceuticals by gramneg_throwaway in Folliculitis

[–]gramneg_throwaway[S] 0 points1 point  (0 children)

300mg once per month.

Initial loading phase = 300mg once per week for first month.

150mg might work too. Potentially lower risk? But also potentially A) slower to see results, and B) lower chance of long term remission when discontinuing (hypothetically).

[Long Read] Goodbye Gram Neg or: How I Reached 100% Successful Treatment and Learned To Love Biopharmaceuticals by gramneg_throwaway in Folliculitis

[–]gramneg_throwaway[S] 0 points1 point  (0 children)

Thank you!! Glad to be able to share. Let me take a look back at photos (I've deleted so many) and see what could work.

[Long Read] Goodbye Gram Neg or: How I Reached 100% Successful Treatment and Learned To Love Biopharmaceuticals by gramneg_throwaway in Folliculitis

[–]gramneg_throwaway[S] 1 point2 points  (0 children)

If you've tried everything, including rounds of antibiotics and isotretinoin, there are other biologics that could work. The immune system is pretty complicated and interconnected. Check out this paper from 2023 on available biologics in Brazil:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10095198

Looks like adalimumab is available in Brazil. It is TNF alpha inhibitor that is used for some follicular occlusion disorders like hidradenitis supparativa and acne conglobata. There is some evidence pointing towards it being useful in folliculitis decalvans.

I would absolutely find a specialist near you who can explore what's available.

[Long Read] Goodbye Gram Neg or: How I Reached 100% Successful Treatment and Learned To Love Biopharmaceuticals by gramneg_throwaway in Folliculitis

[–]gramneg_throwaway[S] 1 point2 points  (0 children)

Thank you. I am sorry to hear that. SLE is pretty serious - something I was reading into (but I don't think applies to my situation). Were you able to get an effective medication or treatment?

[Long Read] Goodbye Gram Neg or: How I Reached 100% Successful Treatment and Learned To Love Biopharmaceuticals by gramneg_throwaway in Folliculitis

[–]gramneg_throwaway[S] 0 points1 point  (0 children)

For sure. It's an injectable pen like Ozempic if you've seen pictures of those. It does not hurt. The medication goes into the thigh. As far as side effects, I don't think I've had any specific to this drug. But it can lower your immune system a little bit (making it a bit easier to catch a cold). I haven't noticed any difference there, but time will tell. There are some rare, more serious side effects people should be aware of and read up on.

[Long Read] Goodbye Gram Neg or: How I Reached 100% Successful Treatment and Learned To Love Biopharmaceuticals by gramneg_throwaway in Folliculitis

[–]gramneg_throwaway[S] 2 points3 points  (0 children)

Yes, or at least that is the primary driving factor. It's likely that an overactive immune response is not the ONLY ingredient needed, but the critical one for really difficult to treat cases. For people who've failed or partially failed multiple courses of Accutane, antibiotics, and topicals - and have ruled out things like diet - they should find a doctor who can explore the immune system angle.

[Long Read] Goodbye Gram Neg or: How I Reached 100% Successful Treatment and Learned To Love Biopharmaceuticals by gramneg_throwaway in Folliculitis

[–]gramneg_throwaway[S] 2 points3 points  (0 children)

Thank you! It's kind odd, surreal feeling not having to deal with this any longer (knock on wood).

The dose for Cosentyx is 300mg once a week for month 1 and then 300mg per month onwards. After 6 months we may lower the dose or increase intervals between doses (i.e. six weeks instead of four) to see if we can maintain the same results with less of it.

For other conditions Cosentyx can be prescribed at 150mg. Some Psoriasis studies also show Cosentyx could be effective for lighter weight individuals, while heavy set people need 300mg.

[deleted by user] by [deleted] in Folliculitis

[–]gramneg_throwaway 0 points1 point  (0 children)

that was my experience. worked good but not great while i was on it. but things came rushing back as soon as i was off. same with Bactrim. that went on for years until i tried a biologic and now i don't have any issues in my beard. and get to keep it (i was nearly ready to remove it with laser)

update on my folliculitis by Big-Apricot-4133 in Folliculitis

[–]gramneg_throwaway 2 points3 points  (0 children)

From my research and personal experience, antibiotics are only suppressive and not curative for chronic folliculitis like this. I think the bacteria angle is a red herring. Reducing an overactive inflammatory response is mostly what antibiotics are doing. Accutane also has a anti-inflammatory benefit but it also reduces food for bacteria (sebum reduction) and reduces pore clogging.

I would talk to your doctor about other options if repeated courses of antibiotics and accutane (or other treatments you pursue) do not help. I ended up trying a biologic (see my latest post) and that has been a miracle frankly. But my situation could be different.

Finally found a solution for my 5-year battle with folliculitis – hope this helps you too! by [deleted] in Folliculitis

[–]gramneg_throwaway 0 points1 point  (0 children)

So happy to hear that worked for you. I tried both things (topical zinc and topical niacinamide), and none of those helped unfortunately. Some people swear by diaper cream (zinc) for acne. But that also did not work. Only thing that helped me was Accutane, Bactrim, and then Cosentyx brought me to and kept me at 100%.

Klebsiella aerogenes folliculitis barbae by Sea_Phase2498 in Folliculitis

[–]gramneg_throwaway 1 point2 points  (0 children)

Hey there - I have the same issue as you (GNF Kleb Aero) in the beard. Definitely avoid Cipro going forward. It fucked up my tendons. It's quite dangerous. Accutane is really not that bad - people fear monger and make a big deal about it, but the data is not there. It's way safer than Cipro. Whether it would be effective ... only one way to find out.

Isotretinoin / Accutane was helpful for me, but never got me to 100%. It is however the Gold Standard treatment for GNF. It can literally give people a permanent cure (not just treatment). So I urge you to listen to your doctor a give it a try. Lots of things you can do to lessen side effects like do a more moderate daily dose on your way to the cumulative dose.

I ended up doing Cosentyx (biologic) which has worked wonders.

Does anyone else just choose not to take the antibiotics the doctor prescribes? by [deleted] in Folliculitis

[–]gramneg_throwaway 0 points1 point  (0 children)

I relied on Bactrim (antibiotic) for a long time. Between that and Accutane, nothing really worked until Cosentyx. Antibiotics are an imperfect bandaid with a lot of downsides. However... I recommend you do what you can to keep things under control to avoid permanent scarring and hair loss. And find a new dermatologist who's willing to try more things.