I think Finasteride may have caused me to develop Parry Romberg Syndrome

General Discussion
#1

About 18 months ago I took two Tribulus capules which made my situation worse.
Up until then I would consider myself quite a mild case of PFS

Within days of taking Tribulus amongst the many new symptoms I developed, I noticed a dent on my right cheek.
This is actually neurogenic muscle loss.

Over the Easter Weekend I saw a pic of myself from before Tribulus but after PFS and the dent was actually there. Just smaller in size.
So Tribulus made it worse, infact within days of taking Tribulus I also noticed small muscle loss on my right bicep and right shoulder, it’s definitely neurogenic muscle loss and I will eventually get an MRI to confirm, I just don’t want to do it now as I am not ready to actually handle it being confirmed.

I have googled Parry Romberg Syndrome and as of now the right side of my face manifests like a very mild case.

This condition generally takes 10 years to burn out and there is no cure or treatment.
In my case because Tribulus made it worse, I am hoping that if I live a clean and healthy life not taking any supplements maybe my situation won’t deteriorate further.

Has anyone else suffered similar?

I would add this is the first time I strongly feel I would like to take a case against Merck for damages due to what their drug has inflicted on me.

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#2

Sorry to read this. My face has collapsed especially on 1 side. I often wake up to new holes under the skin. I don’t think it’s that common tbh. I notice if I have certain foods it worsens. My eyelid also swells up. The symmetry of my face has also changed. One side has dropped. I get severe bone pain in areas of the skull. I havd regular dermal fillers to try to conceal the damage, this may not be a good idea tbh but without them I look even more like a junkie. My GP ruled out Parrg Romburg but then again everything gets ruled out. I think it’s the immune system attacking the collagen. Hopefully things will settle mate. But it is quite disturbing there are no bounds to this fucking disease. BUT like everything there’s been .Kents when it refilled

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#3

Thanks Lazarus

It’s definitely autoimmune in nature. For me anyway.
After Tribulus I can no longer take Vitamin D or Boron supplements which I previously took as they increase testosterone & free testosterone respectively and anything that seems to stimulate my my body causes an adverse or abnormal immune response. Which makes me think any potential treatment will be limited in choice.
If I take vitamin D or Boron now I get pains in my joints and they become stiff too so I am getting an inflammatory response to stimuli. Must be overactive immune system.

I actually saw an Endocrinologist couple months ago who confirmed to me I had PFS. We spoke briefly about the face issue as I had many angles to cover in the consultation.

For me my adrenals are a huge part of the puzzle, I failed the adrenal blood pressure test in his office.
He has had me do a blood tests and a 24hr urine test and I go back in six weeks to discuss results and possible treatments.
He is going to discuss my case with a colleague from the Mayo clinic too.

I feel lucky I got to see this doctor, his clinic was full and could not take any new patients but I emailed him personally and described my situation and asked if he could add me to his clinic which he very kindly agreed to.

At my next appointment I am going to discuss the Parry Romberg angle more. Tribulus contains beta sitosterol and protodioscin and maybe that triggered it again and if I don’t allow my immune system to be triggered further I might get spared further damage.

A few weeks after tribulus I ate quite a large portion of asparagus which contains protodioscin, I believe it to be the food with the highest content and I had facial pain all night on the affected right side including bone pain so obviously will never touch asparagus again.

It’s mad what this condition unleashes on you and all just because we wanted to keep our hair

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#4

No worries,

It started to manifest when I rubbed one off to try to help with sleep. Fall and rise in T levels caused an immune response then with time further sensitivies caused the same issue. Its got worse with time. Great that you’ve found a receptive Dr and well doneijn nailing down the culprits I think interlukin 17 inhibitors could help with this. See my related post. Anyways best of luck and keep us posted.

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#5

Will look into interlukin 17 inhibitors, are they immunosuppressive?

I think in June I will be starting low dose hydrocortisone for my adrenals and then taper off eventually hoping they pick up the slack after withdrawal. I don’t think at that dose they’re immunosuppressive

Did your GP tell you why he ruled out Parry Romberg Syndrome? It would be a relief to know its not this although from your experience the facial issue can further deteriorate, I just have to hope mine won’t

#6

Yeh they inhibit inflammation in that pathway which is thiught to be linked to muscle and tissue wastage. Hydrocortisone seems OK I became resistant to it in 2013 which was a good number of years after developing pfs. The GP said it was genetic and shrugged his shoulders I don’t think we have it tbh it’s probably a mixture of autoimmune and hormonal deprivation abd as j mentioned itsrwveraed on occasion which is more In tune with auto immune. I think you’ll be OK

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#7

Lazarus thanks for all the info, if I could just pick your brains once more.

When you’ve been on strong imunosuppressants did you still continue to have facial wasting?
Because from what I have read they don’t generally work in Parry Romberg Syndrome cases

And also is it very risky taking such strong medication on a long term basis or is there certain Immunosuppressants which are more safer than others?

I would love to be able to take vitamin D and Boron again because I get noticeable improvement with my penal shrinkage and get an overall boost to my workouts

The Endo I saw told me high dose drugs would be needed to counteract the inflammatory response
from vitamin D and Boron when I asked him but we didn’t discuss me taking them.

#8

Not a problem.

I never had wastage of any sort when on AI drugs but I was also taking fin on and off. The facial wastage only started these last few years when I fully got off 5aris

Biological immune suppressants are less toxic and less dangerous and can be tolerated much better. BUT we’ve heard that all before so who knows. Still I think they’re safer than previous generation of drugs.

Personally I’d now steer clear of vit D and boron. Mega doses have put others in big trouble The risks are too high

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