New UK member, hoping I will get better


#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
United Kingdom

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
Google search

What is your current age, height, weight?
36, 185 cms, 85kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
Tried a few times over the past year, at 1 mg per day or 1mg three times per week

What condition was being treated with the drug?
Hair loss

For how long did you take the drug (weeks/months/years)?
Several months, although with a few breaks.

How old were you, and WHEN (date) did you start the drug?
May 2017

How old were you when you quit, and WHEN (date) did you quit?
July 2018

How did you quit (cold turkey or taper off)?
Cold turkey

How long into your usage did you notice the onset of side effects?
About two months

What side effects did you experience that have yet to resolve since discontinuation?

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Not tried anything yet

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
Not had any blood tests yet, waiting to see specialist

Anything not listed in the above questions you’d like to share about your experience?
No

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

Going through a living hell.

Decided to take Finasteride in May 2017 due to some hair loss at the front of scalp and on top of head. The hair loss wasn’t even that bad (how stupid I feel now!) but I had heard that if you leave these things, you may not be able to grow the hair back so best to attack it early. So tried finasteride, I think 1mg per day for a month or so. I remember getting erectile dysfunction, which seemed to persist for several weeks and I remember Cialis did help. I thought it improved but perhaps not to 100% normal. I discontinued the medicine.

I decided to restart the medicine in Augusut/October 2017 (so a few months later) - I must have thought the ED was a bit better and I heard that the side effects tend to go away in time away even if you stay on the drug. I remember getting breast pain and stopping after several weeks. Cant remember about the ED but I presume it was generally alright. The breast pain stopped after the drug was stopped.

I tried minoxidil for several months but I didn’t feel it was really enough so decided to give finasteride another go in April 2018, 1mg three times per week. I hoped the lower dose would reduce the chance of breast pain, ED, etc. The breast pain came back but I thought (probably stupidly) that i would push through as it may get better but in last July 2018 I got very severe ED so stop the medicine. Didn’t think too much about it at first but slowly realised this was not like the previous ED - I was totally impotent. Perhaps able to get a sort of semi-erection, but I have not been able to have sex at all. Not once. And the erection just feels so strange and different to usual.

I tried Cialis - both on demand dose and a low dose of 5mg per day. There is some small improvement in the erection but basically the same. No way I could have sex and it needs constant stimulation. Never fully erect. The fact that my erections don’t improve significantly on Cialis really makes me think this is a hormonal thing of some kind, or something else - not the typical type of ED.

So it has now been 3.5 weeks since I discontinued the drug and I have been totally impotent. No change at all. It has literally been the scariest time of my life! Of course, I know that most sides are done in a few weeks. I am really hoping I am just being slow to respond and I one of the ones who gets better in a few months. But given there are been no improvement at all … I feel very worried.

I am super scared I won’t have a sex life. Its one thing to say I have ED but can have sex on Cialis and quite another to say I am totally impotent and can’t have sex at all. Just feeling devastated at the moment. Sex was a big part of my life before and I really love women! The idea that this has just gone … devastating.

Really hoping its not as bad as I think and things will get a bit better. Gonna see Dr Amr Raheem, Consultant Andrologist, on Wednesday. He is one of only two consultants lists on the Post Finasteride Syndrome Foundation of doctors in UK who apparently treats or at least has expertise on this condition. No idea if he will be any good but lets see. He will probably just say lets see how it all goes I imagine.

Any hope guys for me? Do you think I could still recover, at least to some kind of normalicy? I am totally devastated at the moment and recovering to like 60-80% at the moment would be like a dream! Just being able to have sex again is all I want! But the idea having to use things like injections or penile implants at 36 is just devastating. Those seem like the next step if claims isn’t working.

I feel like no one understands really, family and stuff. Can’t tell me friends. Just a totally shit time at the moment.

I plan to do blood tests, although I kind of expect them to be normal. So many people seem to have normal tests. I didn’t have a ‘crash’. Just sexual symptoms which continued after I stopped. My libido is fine so probably testosterone is fine. I do wonder about my oestrogen levels, given the breast pain. But that has gone now so I kind of expect all the hormones are back to normal. We will see, I’ll post the test results when I get them and also the advice from Dr Raheem.

Do do you think if there are hormones out of range on the test (like oestrogen), correcting them and I might stand a chance of getting some kind of normal-isn erection back?! Well, at least hard! Its not been hard for weeks now!

Hoping for a bit of hope and encouragement guys because feeling super low. It does sound like a lot of guys do show improvements. Full recoveries are probably rare-ish but do you think I can hope for some improvement? Of course, I know some guys never make any progress. I feel like that now, no movement at all on the ED front.

Not sure whether I should do something to try and kick start all this, like a medicine to treat any hormone imbalances (if the blood tests show any). If whether to just let the body adjust to all this and try to be healthy.


#2

Hey there man.

You can check my profile and read my story - I’m going through something similar right now. From what I can tell from this post you’re going to be OK in some time, at least from what I’ve learned here. Here’s what I can tell so far:

The bad news:

  • You’re having side effects - and they’re lasting beyond the 2 weeks the manufacturer says they should upon stopping
  • You’ve taken the drug more than once - which sometimes leads people to be worse off than just once

The good news:

  • You haven’t had any mental or physical side effects. From what I can tell these are much more significant and hard to reverse
  • You’re not experiencing any insomnia or other weird effects
  • You’ve gone >2 weeks without the infamous “crash”. Seems like most everyone gets this almost exactly at the 2 week mark after showing strong, false improvements. Recoveries after this seem to take much longer
  • You’re responding to cialis even if minorly

I am far from an expert, and think very few people if any truly know what’s going on with this drug. From what I can tell though, I’d say you’re going to be OK. It may take longer than normal to get back, but if I was a betting man I’d put my odds on you recovering after a month or two.

Only other thing I can suggest is to go ahead and eat healthy, exercise often, and take your vitamins (Multi vitamin, Vit. D, maybe Zinc are recommended from what I can see). Try to stay calm and go about life one day at a time - I notice I do better physically (shrinkage in my case) when I’m relaxed and warm than not. Hopefully someone here can provide better information than me - but your case appears to be promising.

Keep us in the loop as you progress - will be watching your recovery!


#3

Thanks for the encouragement mate :slight_smile: Definiely what I need! I’ll have a read of your thread and post my thoughts if I can


#4

You can go blind forever taking Cialis along with all other ED drugs, the chance is low but it can happen.


#5

Hi there from another uk member. You are understandably feeling completely panicked just now, but with regards your sexual side effects, you are probably experiencing them at their worst at the moment and viewing it from this panicked state. It is still very early days for you and I don’t think you can properly ascertain from this vantage point what your longer term diagnosis is. Although this isn’t always the case, time heals a lot for many. Good luck with your appointment with Dr Raheem. I’m interested to know what he says. All the best.


#6

Thanks IBV and Scotsman! Yeah, really hoping that time will be a healer and things will slowly get better. The first time this all happened and I had ED that seemed to improve but it was a different situation then, I was still able to on occasion have sex then and I think I could get fully erect occasionally. Not at all this time so it does feel different.


#7

Something else to mention, my ejaculate seems very watery and not particularly think. I presume this is also evidence that the finasteride is still affecting my body. Presumably not the drug itself since it leave the body quickly but the effect it has on the endocrine (and other?) systems, even after discontinuation.


#8

A quick update for how I’m getting on.

So its been about a week or so since I posted my story. Im back on the low dose cialis (5mg per day) and I’ve noticed it does actually help with my erections. Its strange though, I would’t describe it as a normal erection. It takes much longer to get and then is very hard to maintain. I don’t really think I’m ready for sex but this is at least an improvement to the prior weeks.

I also suspect that the major reason I am having these sexual side effects is in relation to my prostate. I have had prostatitis in the past (non-bacterial - mainly painful between the legs, can be painful on ejaculate) and I’ve actually started to notice some of these ‘old’ pains coming back. I suspect this is because the prostate is starting to ‘recover’ now after the finasteride and the prostate starting to return towards its original size and shape. We all know finasteride shrinks the prostate. I suspect when the prostate was smaller on finasteride it was suppressing some of the old prostatitis pains.

I’ve also notice now that I am really struggling to orgasm and ejaculate. Again, I suspect this is because the prostate is returning to its original size and the body is just adjusting to this. Any fluid which does come out is very watery and not like normal ejaculate at all. Hopefully this will change as the prostate repairs itself.

This is all speculation of course about the prostate. I can’t know for sure this is the cause but I think its a reasonable theory. Its at least encouraging that I have noticed some changes as it shows the body is at least doing something! Not just stuck!

I am still a very long way from normal sexually. Can’t have sex. Strange erections which I can’t sustain. Pain in the prostate area. No orgasm. But I feel perhaps some small progress has been made. I was reading somewhere on the forum that after the proscar clinical trials, it took men on average over a year for their prostates to return to normal after discontinuing the drug (not sure if I entirely remember this correctly though, maybe not). But it at least suggests to me that a relatively slow recovery is possible as the prostate recovers.

I still feel super worried and scared of course. There are no guarantees in this crazy world of PFS. Just wondering whether its worth trying to find a new urologist to help me monitor my progress really. You may remember I posted my experiences with a couple of doctors previously (one wanted to empty my bank accounts and one wanted to empty my soul with doom). It would just be nice to find someone slightly more sympathetic and to whom I can actually talk to when I notice any changes. For example, my prostate is getting more painful and the ejaculate water - is it worth investigating this further? Is this what you might expect if its recovering? I don’t feel I could speak to either of the old doctors about these questions.


#9

So things have really started to turn shit again. Feel like everything is collapsing. Just hoping i am wrong and the anxiety is getting the better of me.

I’ve started to notice pain in my penis. It was there intermittently initially, just every now and again. Over the past few days its been there pretty much continually and made life pretty difficult. I think its a sign of the damage that has been done by androgen deprivation from the finasteride. I am really just super hoping it isn’t that bad and still has the potential to repair and heal to some good extent.

I got my blood tests which show a low normal testosterone which makes me think its probably time to a trial to something which will boost testosterone. I was against this at first, and know many people don’t get better from boosting androgens. But given my symptoms are quite specific - presumed damage to penile tissue due to androgen deprivation, even one of the agrologist’s agreed - and I have borderline testosterone, it does seem like its worth a try. I have read studies which show that if you restore normal androgens, the penis can repair itself. Studies in rats look really good. Not sure about humans, but there is certainly some evidence that giving hypogonadal men testosterone (and usually PDE5) will give better erections and presumably this is at least in some part due to penile tissue repair.

I’ve really struggled with erections the past few days, can’t get full like I used to. Still can’t orgasm. My ejaculate is pretty much completely clear. So its all super fucked up really in terms of sexual side effects. Its seven weeks today since I stopped the drug and if anything, I feel I’ve moved backwards.

I did see another urologist who said he thought most people who persistent sexual side effects tend to work themselves out eventually (3-6 months, perhaps longer). Of course, we know not everyone - plenty on this forum who have had it for years and years. I really just hope I get some kind of recover as I feel totally gutted right now. Really feel like my life is falling apart. I was applying for a great just with a great accountancy firm. Had to post pone the offer and start date until I know more about whats going on with my symptoms. Haven’t seen friends for ages, no idea what to say to any of them. I can’t see a doctor about this for a week now, and don’t really want to start a few with a new urologist and have to go over it all again and run the risk of him just saying he thinks its all psychological, or there is nothing he can do, or doesn’t know.

Not necessarily expecting anyone to reply, kind of a long update and a sort of depressing one Really looking for some hopeful messages guys, not sure I can deal with doom at the moment. Its nice to have this outlet where I can read about people and talk. I would be super alone otherwise.

Hope everyone is doing alright. Let me know if anyone has had some success with treating numbness/pain with testosterone or clomid. Also, do you think its worth doing a doppler ultrasound during an erection? Would that give a better idea about the kind of damage that has been done?

Anyone found that the pain improves? Im super worried since it seems to be like nerve pain which is a really horrible pain to have.


#10

Hey Will,

I was thinking about you a couple of days ago, I’m glad you have posted an update, even if you don’t have happy things to report today.

If there’s anything you should be aware of it’s that people here have recovered, and that some people have had temporary recoveries where their symptoms resolved, very, very quickly. I don’t think that you should consider yourself doomed.

I think you should consider taking some time off from trying to orgasm and while I think it’s healthy to have erections and keep blood flowing, I don’t know if you’re possibly stressing your system by constantly testing yourself. Your ejaculate condition could well improve, lots of people here have posted saying theirs has. Things could well be working more slowly at the moment.

It’s still very early in your recovery to start measuring things in years.

Do you have anyone around you that you can confide in?


#11

Thanks Greek, you’ve literally been great since I arrived here and really been a huge support. Thanks for you positive message, I’ll keep going.

I’m literally in bed about to sleep but will writer a longer reply tomorrow. Your totally right about too much self testing, I wonder if I’m creating more problems for myself. I need to stop doing that.

Thanks again mate. Really hope your doing well. I saw your update the other day about feeling you were almost recovered and cruelly having a return of the symptoms. I do feel you are on the right track though mate and feel positive for a full recovery for you :slight_smile:

Thanks again for being there.


#12

Hi mate
I see yet another uk guy suffering
Seems that we are told only a few people suffer side effects from finasteride this has to be total rubbish even when you look on reviews of the companies websites that sell this stuff i would say 30% minimum of the reviews come in negative stating the seriousness of the side effects these guys are suffering and that have got progressively worse not better over time.
All the usual side effects relating to sexual dysfunction lack of sense of feeling / numbness
Brain fog depression anxiety and this tends to lead to anger as nobody thought that they would ever be in this situation and nobody seems to be able to help.
I put up and shut up for years before having to quit the stuff and that’s a major decision you have to make as your almost lead to believe that your hair will just fall out of your head over night.
I like most of you look back and wished i had listened to my body and threw this stuff in the bin where it belongs but again thats a difficult decision as we are lead to believe that the side effects will eventually subside.
I have been to the GP years ago shown him the tablets initially he didn’t even know what it was but once he realized he listened to what i was saying then made arrangements for blood tests but this didn’t happen as i turned up twice for the appointments but the nurse didn’t come in on those days due to illness and weather.
I had never had any luck with my Gp it took around 20 years for them to diagnose my ankylosing spondylitis which is the reason im in this situation as i was so I’ll i ended up self medicating with anabolic steroids this lead to hair loss at a premature age which is the reason i tried finasteride to resolve this situation , talk about ironic… Now years later and further visits to the GP i have had my bloodwork done and told hormone levels seem acceptable i can’t say that with confidence as the gp couldn’t even find the results on the computer for the first 5 mins and then when he did he scanned over a hole array of results in less than 5 seconds and said yes all seem acceptable. I can’t say I have any confidence in this GP as i had previously seen him again and again over a period of 3 months telling him that i can’t keep any food inside of me and that i had severe stomach pain this GP Watched me lose over 40kg in weight over that period when he eventually gave me some steroids rather than yet another pain killer. He also booked me in at the hospital and said that they would contact me but 5 days later my misses took me into A&E as i was so weak collapsing and vomiting stomach acid . The hospital informed her i probably wouldn’t have made another night due to dehydration and mal nutrition hence the lack of confidence. I had to spend around 10 days in the Hospital initially on the intensive care ward I had to on a drip for days and be woken up every 3 hours day and night whilst they injected huge syringes full of steroids day and night it turned out i have something called colitis it’s like chrones disease.

I don’t know where things will go when i get my appointment for persistent ED god help me I have been using viagra for years now just to maintain a relationship as without i have no chance of getting or maintaining an errection due to finasterides long term side effects. This concerns me as it viagra effects my eyes and we all know it can make you blind due to swelling of the eyeballs and the pressure it creates and on top if that viagra upsets my stomach.
Finasteride has alot to answer for but doctors just aren’t educated in the the long term side effects and the medical world is in some sort of denial at this point fingers crossed there will be a cure or at least some form of help in the near future.

Could i ask where abouts are you located in the uk Im in the midlands …


#13

Take a look at this video

A very brave guy went public about his problems he was prescribed the propecia by a uk GP

Big thumbs up to this guy he was very brave I admire his courage to warn people


#14

Hi Will, hang in there mate. I’d defo try and stop testing your erection, and just try and jerk off every couple of days. I’d also try and cut out looking at porn for a bit. I’d try and get as much nitric oxide to your penis as you can, Pomegranate juice is a great supplement, broccoli is also good and try and eat healthy and go gym if you can. Maybe look at using ciallis/viagra even at a small dose as can help get blood going and increase confidence. After your shower try and spray yourself with cold water as much as you can bare as this can help depression and you can get some good mindfulness videos on YouTube which can help calm the mind down. There’s two big studies going on at the moment Baylor and Melcangi and there due to report back soon, which will help direct future treatment options. Your so early into pfs symptoms and so hopefully you will bounce back naturally, but if you are able to donate a small amount each month to the pfs foundation that will be great as every little bit helps.


#15

I don’t bother testing errections mate no morning errections for years now and pulling my pisser ended years ago when this all started only time i bother with porn is with the misses lol keeps her smiling :blush: as its not like she gets alot of action as i have to limit viagra or it stops working properly plus with colitis its not a good combination more like asking for trouble with my stomach.
I cant imagine anyone really masterbates with this infliction mate its a pointless activity as anyone will agree who been hit hard by this drugs side effects. I can truely see why they prescribe it to transgender males if you don’t want a dick that works you can’t beat finasteride for chemical castration…
Cheers for input matey


#16

Thanks for the reply guys - Baz44UK and UKGuy82.

Been feeling pretty ill today not been able to write personal replies to you both but will do so soon. Thanks for looking out for me and giving me some encouragement. Will speak to you both soon and hope your doing alright :slight_smile:


#17

Hey guys,

Thought I would give you an update on what has been going on, hoping for a few encouraging words really.

Its been a while since I last posted and a lot of stuff has been going on! First thing to say is I have been ‘floxed’! I have had a very bad reaction to a course of Ciprofloaxin to treat prostatitis which I have had one and off for a while. Really bad nerve pain, pain in tendons and ligaments, tinnitus, strange moods changes, etc. These could possibility be due to finasteride but I think the profile of these changes are more likely due to ciprofloaxin based on what I have read. It would also be strange for finasteride since it would mean my crash was several weeks after stopping the drug. Its typical for finasteride for the crash to be relatively quickly, not usually 2 months. Either way - I am now dealing with lots of side effects and feeling pretty awful about it all. Not fun.

With regard to sexual side effects of Finasteride, I am not off the tayalaifil (I’ve decided to come off all medicines and try to let my body reset). Its also possible the tadalafil could have been contributing to the tinnitus although not certain. My erections are still very weak and I am super worried now. I am officially over 12 weeks with this so I am now officially suffering from PFS. I can’t have sex and can’t maintain an erection at all. The symptoms are very similar to a venous leak or venous occlusive syndrome. The worrying thing is tayalaifil helped a little while I was on it but not enough to really allow me to have a sex life. So I am in a position where I can’t have sex? If I really am having venous occlusive dysfunction from he finasteide, it is unlikely that injections would help and I am in there terrifying place of thinking about implants. My mind just can’t deal with that really, I am only 36 years old.

There is still hope I suppose, I am just finding it hard to see. The penis should still continue to improve hopefully and repair. 3 months isn’t that long in the grand scheme of things. It does sound like people notice slow and steady improvements over the first year (perhaps even few years) so I may get better. If I can just get to a point where I can have a reasonable sex life I would be happy! Not a pornstar, but just relatively alright. I am still hoping.

There has been a few positive signs. I was having some pretty crazy nerve pains in the penis a month or so ago (this was probably the first signs of the ciprofloaxin reaction). These have no gone, thank goodness! My orgasm has also returned although quite weak. The ejaculate is still very clear and watery but has a few small patches of normal ‘white’ ejaculate. So there has been some moving forward and hopefully this means I will continue to improve.

I need to decide what my next steps are really. Do I get back on the tadalafil and do shockwave? I also need to re-check my testosterone to make sure I am producing enough to mend the penis. Veno-occulisive dysfunction in the penis is often cause by a lack of testosterone atrophying the penile tissues. Clomid is an option but I really want to stay off meds given all the side effects I’ve had and I would really like to give my body a chance to just re-set everything.

I was out today with some friends and the were all talking about their dating life. One was complaining that they have only been with a few girls this year and I was thinking how I might never be with a girl again given my current situation. I just feel super scared and anxious. I have no idea how bad the damage is in my penis and no idea if I will get better. Its just too scary to imagine the prospect that I won’t get better. But its very possible that I won’t.

Hope you guys have some encourage for me. Can’t deal with bad news at the moment. Thanks for reading, and hope you are doing alright :slight_smile:


#18

Hi mate,
It’s a really difficult thing to deal with and I still have bad days myself, but it gets easier. I’m similar age and also from the UK and can totally relate to what your saying. I would say it’s best to take things as easy as possible and reduce stress.

I’ve found some great support on this forum and it’s good to talk to people who understand.

Anyways pfs sucks, but on a positive note there is some important research happening and if you are able to donate regularly to the pfs foundation that will be a great help, they are the ones who are pushing the research. It’s a couple of years away, but Sage 217 a new drug looks like it will be good for us. I can only speak for myself, but I have had some good improvements over time, which I hope will continue.

On the forum there is a project for users to submit their genetic data from 23 and me.The test costs around £88. They are then going to search for any irregularities and use this info to help researchers.

Pfs is a bit like a prison sentence, but let’s hope it’s as short of possible, and we can get our life fully back soon. In the meantime try and enjoy life as much as you can.

Hang in there mate and take care.


#19

Hi Will
Sorry to hear your down in the dumps mate I was wondering how you were getting on.
From from reading your last post I would probably keep going with the tadalafil as shockwave therapy costs a small Fortune.
As for the dating side of things ive been in these shoes myself with friends talking of dating and all that this can really get you down and make you feel less of a man it had a tremendous impact on me initially but I found viagra really helped me out of this hole physically but mentally it can take a long time to adjust your mind to accepting its going to be a long term thing. If it hasn’t been helping at low dose maybe up the dosage try a full 100 mg an hour before its time to party in the bedroom, if that doesn’t work then maybe an everyday small dosage 5mg for a few weeks see how that works out.
I will be straight with you I don’t know what else to suggest maybe someone else on the board knows other ways I can only talk of how ive gotten over this hill mate.

I will be going back on steroids shortly as i use them as a anti inflammatory for my ankylosing spondylitis which is getting out of control again I’m going to use 500mg weekly i haven’t done this for years so it will be interesting to see if my libido picks up and if i suddenly start getting spontaneous errections this would suggest i have low testosterone i doubt it as my doctor says my levels are ok but it’s still going to be an interesting experiment i will let you know the outcome.

I sincerely hope things get better for you mate
PM me anytime matey


#20

Thanks for the support guys - UKguy82 and Baz44uk. Definitely what I need at the moment!

It is encouraging to hear a lot of people say that do get better over time. One of the things I have found so frustrating about when you google side effects is the absolute horror stories that you get online. When I googled about the ciprofloaxin side effects, the first things that came up were permanent peripheral neuropathy and disability. It literally scared the life out of me. Similar with PFS, the horror stories are crazy. People need to know that most people do get better and improve. Maybe not 100%, but enough to have a life at least. I feel like so much of my anxiety is due to this and the thought that this will be a truly devastating situation. I am trying to hand on to the fact that it probably won’t be and I will get back to some kind of normalcy and hopefully a sex life.

That being said, thing are pretty bad. I see you point Baz about getting back not to the tadalafil or viagra. Its a tough call because the antibiotic has really had a bad effect on me and I probably would benefit from some time off. The tadalafil also seemed to reduce in effectiveness a bit when I was last on it? After first it gave me full erections but after a few weeks I couldn’t get them. The bigger concern was I couldn’t maintain them at all. This is something I really hope changes, that move from a PDE 5 non-responder to a responder (i.e. I can have sex, with the meds).

I see your think about steroids for the Ank Spond, Baz. Have you tried the biological drugs? Secukinumab was released a while ago and approved for Ank Spond with very good results. Are you under the care of a Rheumatologist? Its probably better in the long term you see one and be monitored as the GP probably won’t know much about this stuff.