Not sure if you guys with Sjogren’s symptoms were tested for antibodies?
There were quite a few PAS patients in the past (quite a few of them were male too) who had “pseudo”-Sjogren’s, with every symptom of Sjogren’s, but no antibodies indicative of actual Sjogren’s.
Why can’t you still try?
No antibodies and horrific SFN. I will lose my job soon and then it’s all over.
I thought long and hard about filing a claim on my own behalf and representing myself I suppose in a way I had nothing to lose but it’s extremely difficult when you don’t know how the system works, what application to file and what court to file it in and above all else you may not have a case if you took Finasteride- it’s just one massive shit show really.
Yes. I’m angry I ever took it. I lost everything.
Hello, i have been struggling with low semen volume for 5 years from Accutane. What do you think its happening? I didn’t have any other symptoms until my 4th year. New symptoms start to emerge, like dull orgasms, hourglass flaccid before pee and loss of morning woof etc. Is there a way to fix prostate?
It’s been 7 years and my brother was telling me you’ll never win also. But working 45 h + per week with increasingly tough competition and trying to stay recovered is harder than at least trying while you still have the time.
i am American and called a handful of lawyers after my crash as soon as they found out that its about finasteride and MERCK they ghosted me in a snap
Guys, I would be careful to attribute these symptoms to sjörgens syndrome.
Yes, there seems to be an overlap between sjörgens and sexhomomes. High sex hormones and androgens seem to be protective against sjörgens syndrome. So finasteride use may predispose to sjörgens.
But the symptoms you describe are also very normal for Post-finasteride-syndrome as well. I think most PFS-guys have dry eyes, dry mouth, dry skin and changes in ejaculate. Joint pain is a common symptom too.
This can be explained by other factors too: finasteride (and probably PFS) leads to a shrinkage of the prostate, which can explain the changes in ejaculate. DHT plays a role in skin moisture and thickness, slow prudendus nerve has been documented in PFS.
One of the metabolites of 5-alpha-reductase, called 5-alpha-Dihydrocortisol is important to keep the eye moistured. Lack of this hormone may explain dry eyes, blurred vision (probably cataract as well), and is probably important for other glands as well.
Sjörgens is probably a bucket of patients with many being falsely positive diagnosed as diagnoses is difficult and as there are no strict parameters.
Sicca does not only occur in Sjörgens.
I am not saying you don’t have SS, but there are explanations that lie far closer.
Anyways we should look into the pathways why low sexhomomes seems to be related to elevated risk for developing Sjörgens. This could also tell us something about the origin and pathophysiology of PFS!
Have to disagree here. Sjogren diagnosis is notoriously difficult to get. There is criteria demanting either positive bloodwork for antibodies or lip biopsy showing lymphocitic inflitrate (clear indication of autoimmune activity). Unofrtuantely both can take years to develop despite symptoms being present already. That is why average time between onset of symptomes and diagnosis is around 5 years.
So if anything there is a bunch of false negatives around. After finasteride use people that have VERY dry eyes and mouth, and in general feel bad should consider Sjogren.
(Keep in mind normal autoimmunity test as ANA or inflammation test like ESR and CRP will be normal).
https://www.ncbi.nlm.nih.gov/pubmed/18843777
DHEA and DHT upregulate CRISP-3, which is reportedly low in SS. The effect of DHEA on CRISP-3 is indirect and is inhibited by dutasteride, showing that there is intracrine processing of DHEA in salivary glands. In healthy glands, but not in SS, DHEA is effectively taken up and converted to DHT. Sex steroid concentrations in saliva in part reflect glandular uptake of DHEA-sulfate and local intracrine DHEA metabolism, which seem to be defective in SS. Our study demonstrates a prominent androgen deficiency and a defect in intracrine production of active androgens in SS salivary glands, also suggesting that salivary DHT cannot be maintained at a normal level in this female-dominant autoimmune exocrinopathy.
This study for example shows that DHT which has strong imune tampering abilities helps with preventing onset of this type of epithelial autoimmunity.
5-alpha-Dihydrocortisol that you mantion is importand for aqueous humor (liquid behind cornea), dry eyes are problem of lacrimal glands which are target of autoimmune attack, and should be in turn differentiated from Moebian Gland Dysfunction dry eyes that happen after Accutane use.
Thanks for clearing up.
Well then, probably most of us should get tested on sjogren’s sooner or later.
It’s definitely an interesting link and I would love to understand more about the underlying pathways.
How are you now?
I’ve got no better. In fact I’m worse.
Dry eyes: another aging male symptom that’s reported by PFS patients.
This study links dry eye directly to finasteride:
NOTE: The rats were all female.
…finasteride induced significant tear deficiency …A reduction in androgen levels is the main cause of dry eye.
[According to] Singh et al…oral administration of finasteride in both sexes of normal rats produced an appropriate sex steroid‐deficient dry eye model, but finasteride significantly downregulated the number of androgen receptors by 8-fold in the lacrimal glands of female rats compared with those of male rats.
Here’s the Singh study where dry eye was induced in male and female rats using finasteride:
The ten day finasteride administration also showed a significant tear film deficiency in both male and female rats.
So here finasteride is Down regulating androgen receptors not up regulating them…
Hello, would it be possible to talk to you by facebook or some other way? I have given up on these forums and PFS foundation.
Thanks
I have now lost my job and the nerve pain all over my body has worsened. The dryness has increased, and my hair is brittle. The pain is terrible and the sunburn feeling all over my back is too. The Sicca is awful and I even have twitching in my muscles (often painful from the nerves and very active after exercise). I continue to not be believed by people, and people have even got angry at me or said at least I don’t have cancer etc. From reading on thos forum I seem to be in the absolute extreme category. If I hadn’t had taken this pill I’d be living in Spain now with a beautiful woman by the Mediterranean. I am furious and disgusted. I’ve given up trying to make sense of it all, given up trying to get doctors to refer or any further specialists to see me or care. I doubt I’ll even get much or any reply to this, let alone anybody who shares the problems to converse with me by phone or facebook.
Taking this stuff was foolish and unnecessary. I was going through self image difficulties for a short time so made the error. I came off the stuff as I realised I was being foolish. Little did I know my life would be ruined, i’d be isolated, and i’d lose everything.
Will anybody talk to me or help me please?
Hi Johnny. I am so sorry that you are going through this hell. My GPs also initially refused me to see a specialist, but then I persuaded one GP to refer me to a specialist in London, and I have an appt in May. Not sure how this will pan out.
Also, have you reported your side effects to the yellow card scheme?
PM me and I will tell you about my experience
Hello,
Yes I would very much like to hear your story. I don’t have any real hope left. I haven’t reported to the scheme.
Johnny