I haven’t had any immune system problems post-fin, at least none that I’ve noticed. Other than that, I gave up looking for a cure, after 10 years of PFS I don’t think there will be a cure in my lifetime or at least when I’m still young. I might get a penile implant after summer, which won’t help with sides such as muscle wastage etc., but at least I’d be able to have somewhat normal sex.
Hi Cedric,
How do you feel after experimenting with cortisone?
Please take a look at the book “The Medical Medium” -very interesting insights into EBV and how EBV can play a roll in “Mystery Illness” which you’re on this forum, I would think you agree a lot about this illness is very much a Mystery.
Hi Blasé;
Then, I used the medium/low dosage of flantadin first and gave me side effects like malaise and weakness. So the immunologist prescribed me Medrol at medium/low dosage: the first doses at average dosage were 100%, when instead I decreased dosage, i feel yet paresthesia, numbness, weakness, strong feeling of fever;
However, I have almost completed the expected timing of therapy. I did the examinations required by the immunologist, on weekends I will have the reports. Currently enough well.
How are you? Do you have immune problems?
Hello!
Yes I have inflammation.
When you say 100% you mean it brings yoy back to 100%?
Yes, in my case.
Now, i’m to 80% of condition. Maybe i do another cycle of cortisone. I’m waiting an answer from immunologist for whether or not to continue therapy.
Cedric,
Are you still feeling pretty good ?
So if I’m following correctly you started with high dose cortisone which gave you great results, lowered your cortisone dose which made you feel bad and than switched to medrol at a high dose and felt good followed by decreasing the medrol and felt bad?
How long have you been on the cortisone and
Medrol for in total? have your lymphocytes increased on your latest labs?
Could you please post your labs for us so we can see exactly what to get tested for?
Justquitdut tried cortisone i believe and got improvements and if I remember correctly he contributed cortisone to being important in his recovery
Hi, what dosage of Medrol is optimal for you? How long do you use it?
Hi, sorry if I answer you now, but I was fine and did not write a bit about the forum.
So as I told you I did a last cycle (which I’m finishing) of cortisone (corton acetate, the same molecule as our body) for a month at a relatively low dosage. All of the symptoms before were no longer seen because the cause was only one: lowering potassium in the blood and symptoms like paresthesia, exhaustion, tachycardia, etc. This cycle made with potassium integration was totally without side effects. I feel at 90%, the lymphocyte count before this cycle was “good” according to the immunologist, in October / November I will do it, but I think it is very good for how I feel.
The white blood cells were on the verge of limitation, but I think they have now recovered.
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When I take the exams in October / November I will post them.
I took Medrol x 3 weeks, same time for Flantadin. Corton acetate 1 month ca.
The first was too bland, the second I did not understand the cause of the symptoms (we understood it later, when I had suspended it), with the acetate corton zero problems.
Please dont stop to do that.
What do you think are the test we should measure to detect something is wrong with the inmune system?
Thank you
Finasteride definetly damage inmune system somehow, please keep us informed! I also had a recovery using prednisone and doing some protocols that lower inmune activity, I havent had a fever since pfs.
Sorry for interrupting but I need to ask. All, I really mean all my PFS blood results show high lymphocytes and leukocytes, not low. What would that mean?
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Hello have you have information about this issue? Im ectremly interestedd in test regarding inmune system while in pfs, could you direct me to some information about that?
High leukozytes means you have an inflammation. It is probably your gut which is inflamed (leaky gut for example).
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I fit exactly this subtype - since having taken Finasteride, my lymphocyte % has dropped persistently from 35% pre-fin to 20%~ post-fin and my Neutrophiles have gone up in turn.
No doctor so far has an explanation for this and because my absolute lymphocytes are within range, none so far think it’s worth any action (declared mild lymphopenia), despite me having symptoms.
I have also done a lymphocyte subpopulation test post-fin (and post-COVID) and my CD8+ cells are also low (14.6%) [19 -48] - I don’t have a subpopulation test pre-fin/pre-COVID.
Especially after having cought COVID19 twice, I now experience an exacerbation in symptoms to what I previously had.
@Cedric In case this message reaches you, I would deeply appreciate if you tells us if you have improved on Corticosteroids or not and how you are doing these days. Thanks and take care!
Hi Michael,
Unfortunately, since I stopped finasteride, I am accompanied by asthenia which can be profound (with weakness, numbness and epigastric pressure) or light which allows me to carry out daily activities. With the immunologist I found out that all my lymphocytes are below range, but since the cd4/cd8 ratio is preserved, none are activated to get to the bottom of it. The only lymphocytes that are in range are NK cells which are also beyond the maximum range. Unfortunately I only had problems with cortisone, it often accentuated my tiredness. I initially had a partial benefit by doing a few vaccines in sequence to stimulate the cells. Currently, 10 years have passed since it was discontinued but I still don’t have a valid explanation for this asthenia. I hope you are better than me physically. let me know, bye
@Cedric Thanks a ton for your response!
Have you been able to treat your EBV somehow?
For me it’s been getting worse year by year, COVID19 worsened me in a big way.
I have mostly neurological, sexual and fatigue symptoms - however no GI issues - although the latter is very common with PFS.
Are you aware of this: https://www.youtube.com/watch?v=mQAnwC6dTkE ?
(Don’t take me as endorsing it, but I found the angle interesting).
Wish you all the best!
Ciao Michael,
Ho usato un anti-virale per qualche settimana, ma è stato un tentativo perché in realtà non era certa la sua presenza in quel periodo, anche se dagli anti-geni avevo sicuramente contratto la mononucleosi. Ad ogni modo per fare piazza pulita presi l’antivirale.
La tipizzazione mostra sempre e comunque cd3, cd4 e cd8 bassi, ma con un rapporto conservato. NK alte quindi difficile si tratti di cfs. Presumibilmente la finasteride a immunosoppresso la quota di linfociti, e il mio organismo attualmente funziona a giri ridotti. Comunque non ho la controprova purtroppo perché prima dell’uso di finasteride non avevo mai testato i miei linfociti che possono essere stati sempre in sottonumero ma in rapporto utile. Guarisco in fretta dalle infezioni quindi mi fa pensare a quest’ultima ipotesi. Il mio problema attuale è solo l’astenia e la lenta risposta allo sforzo ed al recupero. Sessualmente sono ok, a parte lo stare male fisicamente dopo l’eiaculazione, ma la libido è ok. Infatti prenderò un appuntamento con un andrologo per capire come contrastare questo calo drastico di chimica ormonale/neurosteroidea ecc. durante l’eiaculazione. Per quanto riguarda l’astenia ho anche certificato questo sintomo con il test cardiopolmonare che ha valori nettamente inferiori rispetto a quello che ci si aspetta da uno della mia età.
@Cedric I also feel unwell after orgasm (similar to POIS but not as dramatically, see: e.g. https://poisdata.org/ / https://poiscenter.com).
Our symtpoms seem very similar - I also suffer from asthenia and a slow response to exertion and recovery.
I’m still discerning if this is from COVID19 (i.e. if I have Long Covid) or if it has been “just” PFS worsening over time.
Have you checked your hormones?