When I tabled Ehlers with my rheumatologist over a year ago I was flatly denied how long have u been dealing with pfs @Fighter1
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As frightening as this is, thank you very much for sharing. I will plug into sci-hub for both my own reading and to forward to my doctors. My Immunologist/Allergist loves PubMed. So do I. Unfortunately though, before I found him, my previous doctors would tell me PubMed isnât a âverifiable sourceâ. Thankfully, that is no longer an issue. Earlier, it felt like I was screaming in space and no one could hear me. Iâm sure you all can relate.
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Iâm sorry to hear that, but am not surprised given my early experiences. For me, this all started when my idiot dermatologist (sorry if Iâm being redundant) prescribed me Tretinoin cream for sun damage. I only used it for a week in August 2020. My hair started falling out like crazy in October 2020, unfortunately, I did not connect the dots until later though. Was then prescribed Clobetasol in March 2021. Only used once and felt weird, so stopped. Then, I was prescribed Finasteride. Read up on side effects and said no way. Asked for something natural/safe. Was told Finasteride is really âbenignâ but if thatâs how you feel, get some âSaw Palmettoâ. Unfortunately #2, health food store employee gave me Saw Palmetto Extract with Pygeum and Pumpkin Seed Oil. Took 3 doses. Morning and night of April 3rd and morning of April 4th 2021. Within minutes, my stomach sounded like a chemistry set, my penis ached/shrunk (in itâs flaccid state), my testicles hurt like I put them in a vice and I was suddenly outside of my body mentally. I was a spectator watching myself, I had trouble spelling my name at times. Had to think about it. As for my joints, Iâve always been on the flexible side (my Doctor confirmed this), but not hypermobile. While my joints are suddenly popping/clicking/hurting out of nowhere, I donât seem any more flexible. Sadly, probably less. Donât know if thatâs good or bad overall though given the likely EDS. Wanted to mention regardless as it might be apropos. We have already confirmed pelvic floor issues, I start therapy next week. It appears my left side is worse than my right (when I did the back rolls in evaluation).
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Yep! In fact, I first noticed some gum loss issues in December 2020/January 2021. Suddenly, my floss would go up into my gums. That and I developed a random toothache. At the time, my dentist (who believes me about PFS) just sanded down one tooth and it subsided. He believes some shifting was causing me to grind. When things really hit the fan, I took both your and his advice and wore a mouth guard. Still do, but not everyday, most of my shifting/tooth pain has slowed down. Knock on wood. Gum loss continues steadily though.
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Hope it shows
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I found some interesting threads about our issue on HLT among others. People using Minoxidil who mirror our sides.
Makes me wonder, if Fin or Minoxidil gave us this issue. Some good studies done on Minoxidil and itâs negative effect on collagen.
Did any of you guys also use minox? @adamxx @LazarusRy @Jonnas12 @lacpaz @Dknighten
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@Cbrandel yeh I used it on and off. Even after I discovered pfs. I wasnât aware of its dangers until 4 ish years ago when I stopped.
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I remember that i read about minoxid at the hairloss forum and that there is a big risk of getting dark cirkules under Youre eyes. So i decided not to take it. Unfortunely i read about propecia as a safer alternative the only risk Ive read about was the low libido. In my stupid mind i thought that wasent a big problem as long as it Will pass If i stopped and that Ive taken ssri when i was younger and thought the libido loss woulde be the same. But now i have loss both libido and collagen. So i thought i was carefull and dident take any risk But in reallity i was planing with fire.
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I had been taken oral Minoxidil during my finasteride treatment. The two poison could be work together since i got my skin/body/penis fibrosis
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Yes i used it before taking fina, i had bad allergic reaction after 3 months of use and i stopped
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I got it without minox
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Yeah I found some evidence both Minox and Fin can alter collagen synthesis but in different ways.
- The mRNA expression of both MMP-2 and MMP-9 were significantly increased on day 7 of finasteride treatment, mainly for MMP-9 and returned to the control levels by day 30. However, gelatin zymography showed that MMP-9 activity was significantly increased on day 7 of finasteride treatment and remained elevated on day 30 (p < 0.05), while MMP-2 activity was reduced after 30 days of treatment. Finasteride increases MMP-9 and reduces MMP-2 activities in the prostate.
MMP are invoked in extra cellular matrix degradation and TGF Beta signaling (talked about in Baylor study).
- As expected, TGF β1 mRNA expression was upregulated by finasteride treatment. However, COL1A1 and COL3A1 mRNA expressions decreased after both 7 and 30 days of finasteride treatment.
Both studies are done on rat and their prostates, but itâs interesting nevertheless. Fin sure interacts with collagen production / structure.
But it looks to be in different ways than minox, but the results may be the same.
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Iâm glad you mentioned this as I neglected to. I used for two days in March (after Clobetasol, but before Saw Palmetto Extract). Got a weird penile sensation, so stopped.
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Yes, I did. For maybe 6 months or so before trying Finasteride.
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Quite ironic how we tried to look younger, but ended up with premature aging instead. I canât help but sigh at myself. Should have known itâs not that easy to trick mother nature.
When I look back at it I think some of my skin issues started with minox. Hell I even started to have insomnia at that time, but thought it was due to the night shift I was on at the time. I can also remember my eye sight being kind of blurry.
I clearly remember the brief period in between me quiting minox and starting fin. I felt so fucking good, but I thought it only was due to my 3 weeks vacation.
Worst part is, neither fin or minox actually helped my hair in any way lol.
Did you notice anything on minox? I know you got hit super fast with fin. Makes you wonder if using minox put you at higher risk for adverse effects with fin.
But at the same time people get PFS with only minox or only fin. Which is even more weird since minox doesnât cross the blood brain barrier like fin do. Can PFS start in the body and spread to the brain?
So many questions, but so little answersâŚ
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Hi bro, I took a lot of stuff before fin. I canât tell you for sure if I was taking minoxodil too.
I found what this issue is called âcutaneous hyperextensibilityâ.
Itâs normal in Ehler Danlos apparently. Looks 100% the same, although we might have a âlightâ version.
Some pictures from Ehler Danlos patients.
Edit: Also found this list of over/underexpressed genes in androgen insensitivity syndrome.
COL5A3
COL4A1
COL4A5
Are all underexpressed in AIS and the COL genes are linked to Ehler Danlos.
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Winter Starts and I habe extremely dry skin in my hands and face. Any Suggestionen what to use that is not hormon related? Hylauronic Acid serum worked woanders immediately but increased sexual dysfunction
Aloe Vera Gel?
I tried Argan Oil but I dies almost nothing
Btw did anyone of you do a skin biopsy at the dermatologist?
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Looks like mine as well
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