Anyone found a way to manage/limit the side effects from ED medication

User

Posted 29 Nov 2023 at 20:40

Hi all looking for some advice
Nearly 3 years post RP that was supposedly nerve sparing ! Some signs of life in the erection department but nowhere near the recovery I was expecting or hoping for. I use the pump 2-3 times a week but only as exercise, tried the rings and they hurt and don’t seem to work that well. Natural erections are are much improved with the durex ring, but nothing really good enough or long lasting for intercourse without the addition of medication.
I have tried all 3 and unfortunatley they all give me really bad side effects. Sildenafil gives be a banging headache and a really funny dizzy feeling with only mediocre results. Vardenafil (Levitra) doesn’t seem to work at all and has a similar headache. The only one the seems to work well is tadalafil but this gives me really bad heartburn, pain in my lower back and really achey thighs and calf’s !
Tried the one off 10mg event dose, the 5mg daily and the smallest 2.5mg daily
I’ve taken the 10mg on 4 or 5 occasions and the whilst the results are good the side effects are the worst.
Tried both the 5 and 2.5mg for 2-3week period before I decided the gain wasn’t worth the pain - I’ve tried this 2-3 week period a coupe of times for each dose.
So my questions
Does anyone else suffer with similar side effects if so, have you found a way to reduce/limit them or found that they get better after a period of time - how long to I need to suffer ?
Are there any other options ?
Im not giving up hope yet but after nearly 3 years things are unlikely to improve much more so I’m hoping there’re maybe some ways to reduce the side effects.

Thanks

User

Posted 30 Nov 2023 at 08:04

I like the dick effects but the side effects I find unbearable. I also had an unexplained corneal swelling that I have attributed to tadalafil OR the COVID jab. So now I avoid both!

8 years out the ring is what works for me Inc the new ring on the block discussed in other threads.

At about 2 years I was using the injections to great effect, I am convinced these helped with recovery too as they gave me a real hard on. Might be worth giving them a go.

User

Posted 30 Nov 2023 at 10:12

Originally Posted by: Online Community Member

8 years out the ring is what works for me Inc the new ring on the block discussed in other threads..

Looks like i have missed that one when searching the threads, sounds interesting - could you post a link to the ring or one of the treads it is being discussed in please ?

Thanks

https://community.prostatecanceruk.org/posts/t29878-Erection-insanity---any-experience-out-there

User

Posted 01 Dec 2023 at 00:09

I wonder about this question a lot. I'm one of the less than 0.1% of people for whom these pills cause hearing problems. The tinnitus that I now have from taking them is worse than the ED, since it's always there and it makes it difficult to sleep. It's pretty much the worst outcome from the entire process for me (so far!). At first the problem was with Tadalafil and I was okay with Sildenafil. Then Sildenafil also became a problem. Recently, ENT suggested I try it again at a low dose, having left off for a few months. 25mg produced a really good erection and I had no new hearing problems. I thought the problem was solved. But the second time I took it there was some increase in tinnitus (but in the ear that was previously the better one, so now I'm getting it from both sides). I am now wondering whether to have one last roll of the dice with the lowest dose of avanafil or just admit defeat. I've read everything that I can find about avanafil and it seems its main advantage is that it is more selective and doesn't interfere with other PD enzymes as much as the older PDE5 inhibitors do. It's generally supposed to produce fewer side effects and fewer serious adverse events as a result. That said, it seems as though studies have been quite small scale, and because the drug has not been used so widely there is much less data for it in general and less opportunity to report problems. Could be worth a go for you though, Philip.

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User

Posted 30 Nov 2023 at 08:04

I like the dick effects but the side effects I find unbearable. I also had an unexplained corneal swelling that I have attributed to tadalafil OR the COVID jab. So now I avoid both!

8 years out the ring is what works for me Inc the new ring on the block discussed in other threads.

At about 2 years I was using the injections to great effect, I am convinced these helped with recovery too as they gave me a real hard on. Might be worth giving them a go.

User

Posted 30 Nov 2023 at 08:24

The worst side effect for me is acid reflux. I don't need regular medication for acid reflux but when I take a pde5 inhibitor I now always take a proton pump inhibitor (lanzaprazol or similar) at the same time.

Dave

User

Posted 30 Nov 2023 at 08:42

Hi Phil,

Nine months post non nerve sparing RARP.

Tablets have no effect at all, neither did Caverject. Invicorp was initially brilliant. Not as good as natural but good enough for the job.

I have been struggling a bit with it recently, but putting that down to losing my injection technique.

Have you been to an ED clinic? It was a nurse at mine, that got my GP to prescribe it to me

I've done a lot of ED research on here and found francij1's advice on jabbing is usually spot on, he should have a Cert of Ed. 🙂

Adrian

Edited by member 30 Nov 2023 at 08:58 | Reason: Not specified

User

Posted 30 Nov 2023 at 09:45

Originally Posted by: Online Community Member

8 years out the ring is what works for me Inc the new ring on the block discussed in other threads..

Looks like i have missed that one when searching the threads, sounds interesting - could you post a link to the ring or one of the treads it is being discussed in please ?

Thanks

User

Posted 30 Nov 2023 at 10:04

You could eat watermelon its high in citrulline you can also buy a citrulline suppliment although I think its best to get nutrients from food sources citrulline can help men who dont respond to viagra

If you type watermelon citrulline into your search engine or YouTube its full of info regarding citrulline and ED issues

Edited by member 30 Nov 2023 at 11:58 | Reason: Add more info

User

Posted 30 Nov 2023 at 10:12

Originally Posted by: Online Community Member

8 years out the ring is what works for me Inc the new ring on the block discussed in other threads..

Looks like i have missed that one when searching the threads, sounds interesting - could you post a link to the ring or one of the treads it is being discussed in please ?

Thanks

https://community.prostatecanceruk.org/posts/t29878-Erection-insanity---any-experience-out-there

User

Posted 30 Nov 2023 at 13:55

Originally Posted by: Online Community Member

If you type watermelon citrulline into your search engine or YouTube its full of info regarding citrulline and ED issues

Youtube is generally an extremely poor resource for medical information - you need to understand how to tell if you are looking at a reliable source, and most reliable sources don't use Youtube, but publish papers for their peers to review.

If we look at the one research paper on this Oral L-citrulline supplementation improves erection hardness in men with mild erectile dysfunction, the patients were on 1.5g/day of citrulline. This improved erections in less than 50% of the men (when you cancel out the improvement in the placebo branch) by one erection hardness level. This is considerably less effective than Tadalafil for most men, but may be worth a try.

To obtain that amount from a watermelon, you'd need to eat almost a kg per day.

You've tried 3 of the PDE5 inhibitors, so you might as well ask to try the forth - Avanafil/Spedra. There might be some resistance because it's the most expensive, and in most cases not any better than the others.

User

Posted 01 Dec 2023 at 00:09

User

Posted 01 Dec 2023 at 00:48

Avanafil was the last of the PDE5 inhibitors to come to market, and pretty well all the comparative research on the PDE5 inhibitors was done before then, so it's quite difficult to find detail on it's use, actions, and comparative side effects.

As far as I know, the mechanism by which PDE5 inhibitors can cause tinitus and sudden hearing loss isn't known, but PDE5 and cGMP which it acts on are used in many parts of the body.

User

Posted 01 Dec 2023 at 11:24

Thanks Andy. I found this interesting (the bits I can understand), though I can see that the studies cited are small and all quite limited, so might not be all that significant:

https://journals.sagepub.com/doi/pdf/10.1177/1557988319880764

Seems like it might be worth a try for those like Philip who can't tolerate the older PDE5s but who don't have permanent side effects from them either. Avanafil certainly is pricey though!

On the tinnitus issue, yes, nobody really knows. The connection is quite widely recognised (except by my andrologist, who'd never heard of it) but it's a tiny percentage of people who are affected: 0.01%—undetectable in PSA terms... I found this interesting, though I don't have skills to read the images, and of course it's only one case:

https://www.researchposters.com/Posters/AAOHNSF/AAO2017/SP314.pdf

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