Getting a prescription for pentox in the UK???

[panic]

Hi. I've searched the forums but I haven't found an answer to my question. The search function doesn't seem to work very well and the forums are very hard to navigate (too many subforums and lots and lots of thread hijacking).

Has anyone been prescribed pentoxifylline in the UK? Or heard of anyone else being prescribed the drug in the UK (with links please, if possible)? Has anybody ever tried getting it prescribed by complaining of intermittent claudication or something similar (since that's what the drug is made for)?

I've got an appointment with a urologist next month and I don't know whether to even bother going. I'm concerned that I'll be given some the same old "let's wait for it to get worse" schtick, or that old chestnut: "you should try vitamin E, even though I know it doesn't work"

Here's a (long) bit of background, for anyone who's interested:

- About 2-and-a-half years ago (or whenever I registered here), I started to feel sharp pains in the right-side of the shaft of my penis. Then I began to notice large, soft lumps. Then reduced potency (erections more difficult to achieve and maintain) and increasingly-rare morning erections. Slight indentation near the base. Then small, INCREDIBLY PAINFUL lumps (about the size of sand grains) on the right side of the shaft, which slowly started to increase in size.
- I tried Vitamin E, ALCAR (a.k.a. ALC), arginine, antihistamines (they're very cheap and safe, and I thought they might help prevent calcification by mast cells), tamoxifen, ibuprofen (for the pain (doctor recommended - didn't work, and gave me a stomach uilcer!!!)). Nothing really worked, although the ALCAR helped with the pain, and I think it probably slowed down the progression a bit.
- One morning, I woke up and when I looked down, I saw this weird little, bent (about 70 degrees to the right), rubbery erection. It was horrible. I instinctively tried to straighten it out and it just bounced right back, like it was made out of rubber. I suppose that was the moment at which I realised that I DEFINITELY had peyronie's disease, and I had to do something about it.
- So, I looked on the internet and found a website selling pentoxifylline (drugdelivery.ca, which now goes by the name pharmacyescrow.com). It looked really shady, but I was desperate, so I handed over my credit card details and, surprisingly, they actually sent me the pentox! Brilliant! - So, I've been using them for a couple of years, and I suppose I grew to trust them, but in February this year, they sent me fake drugs and committed two acts of fraud on my credit card (and tried to commit a 3rd!!!), so I don't want to use them anymore.
- The pentox worked really well! I was taking 400mg 2x per day (at first, I was taking it 3x per day but it was too expensive and I didn't notice much difference after cutting down to 2x daily). After 2-3 months, I had a total reversal. Full potency, regular morning erections, no curvature, no lumps, no pain.
- I ran out of pentox a couple of months ago, and since I don't want to buy it from that website that ripped me off, I had no choice but to ask my doctor to prescribe it. He said he couldn't prescribe it unless a urologist said it was okay, so he referred me to the uro (assured me that I'd only be waiting a few weeks, yet here I am 2 months later, with another month to go - gotta love the NHS)
- Since coming off the drug, I've noticed things getting worse again. Not anywhere near as bad as before starting pentox, but mild pain, mild curvature, noticeably weaker (and more difficult to maintain) erections, noticeably fewer morning erections, etc, and I can't help worrying that it's only going to get worse. I'm still taking ALCAR and arginine (and anti-histamine), but they only seem to slow down the progression, not stop it. So I want to get back on the pentox ASAP.

- However, my dilemma is this: I've since discovered that another website is selling pentox (inhousepharmacy.co.uk) under the Trental brand (with the less common drug name oxpentifylline (it's the same thing)). I've used that website for about 7-8 years and they're pretty much the only trustworthy pharmacy on the entire internet (I only switched my business to drugdelivery/pharmacyescrow because they were the only website selling pentox at the time). There are two problems with inhousepharmacy, though: (1) they take a while to deliver (usually 2-4 weeks) (sometimes longer if it gets caught-up in customs); and (2) because they don't sell a generic version, their pentox ("oxpent"???) is a little more expensive than the other website and I was already having trouble affording it.

- So should I buy the pentox from inhousepharmacy, only for it to be delivered around the time of my urologist appointment, knowing that if I do manage to persuade the uro to give it to me, that means I've just wasted a load of money on a drug that I can get for free on prescription? Or should I wait to see the uro, only to have him completely dismiss my concerns AND THEN order the pentox from inhousepharmacy and wait ANOTHER month for the drug to actually arrive?

I've kept the old pentox packaging to prove to the uro that I have actually been taking the drug already. So it's not just a case of me reading about it on the internet and thinking that it might work - I actually KNOW that it works (for me) and that the drug was perfectly well-tolerated. Do you think this might give me some leverage with the uro?

So basically, what are the chances of me getting it on prescription? And if I do buy it from inhousepharmacy AND manage to get it on prescription, would anyone here be interested in buying the spare batch from me?

Thanks for reading!

[George999]

panic,  Several thoughts on your post:

1)  Personally, I would NOT confess to the uro that you have been buying an illicit prescription drug over the Internet, at least not on your FIRST visit.  There are a number of ways the uro might interpret that information and most of them would probably not be helpful to your cause.  I WOULD carefully print out all of the documentation from the resource area of this website and present it to the uro.  If the uro refuses to prescribe Pentox for you at that point, I would respectfully ask the uro for a referral to a Peyronie's specialist.

2)  There ARE multiple UK posters on this website who can advise you both about UK uro's AND about reliable mail order sources.  I am sure they will add their responses soon.

3)  I am going to suggest to the moderators here that they make a few important subtopics "sticky".  The problem around here is that if you restrict topics, people claim you are not being flexible enough, if you don't the same people claim it is getting confusing.  Its just a huge people problem in which all of us like service as long as someone else is doing the work.  But I think the "sticky" topic solution might help.

- George

[panic]

Thanks for the reply George

I already told my GP everything when he referred me, so I think that will already be on my medical record. I agree, though - it could look bad, especially seeing as I'm practically peyronies-free now and I don't really have any proof that I had it in the first place. Although I do have photos of back when it was straight, and it has developed a slight curve since I stopped taking the pentox (not quite peyronies, but it's definitely there)

I've already printed out the stuff I want to show him:
http://www.jco.ascopubs.org/cgi/reprint/17/10/3283.pdf (pentox and vitamin E in the treatment of radiation fibrosis)
http://www.nature.com/nrurol/journal/v3/n2/pdf/ncpuro0409.pdf (the pentox peyronies case study)
http://www.popcull.com/pentox.pdf (new double-blind placebo study on pentox in the treatment of peyronies)

But I don't want him to feel like I'm telling him how to do his job, so I'll try to play dumb at first

[newguy]

It's great that you're taking evidence to him. That's the right move at this stage. In the UK, much like the US, getting trental is a bit of a crapshoot. Some urologists says yes, others no, and it's hard to second guess their decision. Those that are willing to prescribe it sometimes appear to have this "i'll prescribe it for six months" attitude, so that's another hurdle. Pentox evidence is growing, so I should think that the chances of being prescribed it are on the rise.

On interest in your post, in taking it at face value is that pentox appeared to offer you significant improvement. What length of time was there between your injury and starting on pentox? Of course it's possible that your condition would've recovered on its own, but your comments concerning it getting worse again, do suggest that starting on pentox wouldn't be the worst move in the world. Maybe you could take a picture now, and one after a few more months of pentox and see if you see a difference..

You mentioned inhousepharamcy.co.uk . I actually persuaded them to stock pentox. I agree that it is very expensive though. If you don't have much luck at the urologists, you could try https://www.riverpharmacy.com/ . They have a good reputation and a few people here use them.  

[panic]

Oh, so that was you? Good call. I've asked them to start stocking a generic version as well, but I haven't heard back yet.

Thanks, but I don't think I'll try that website you recommended. Their prices are ridiculously low and I'm of the mind that if something looks too good to be true then it probably is.

Yeah, I suppose I really should start taking more photos of my penis. I could call it a "boner journal".

I think the thing that triggered my peyronies was the use of the anti-androgen, dutasteride (for hair loss). The pains came shortly after starting that. But I've stopped taking it now, so maybe that's why the peyronies hasn't progressed as quickly as before.

[newguy]

Pentox is a very cheap drug though. It apparently costs about the same ($0.13-15 per pill range) at costco in the US. The sites prices for cialis and so on, are higher than they are on other sites deemed to be reputable. If you want extra layers of security perhaps purchase from a high profile canadian online pharmacy.

I'm going to order some pentox from inhousepharmacy just to compatre the look and consistency in relation to what I already have here. If there are any definitive way of getting a sites offerings checked out, maybe people here could pool together so that we can be all but certain of of sources.

Anyway, please do let us know how you get on at the urologist! If it always preferable to obtain drugs through a doctor.

[ohno]

I'm with you on this topic. How do you know any of these on line pharmacies are legit? I had the same thought myself as to pooling together resources to check out which ones are trustworthy. Anyone else?

[newguy]

Yes, there must be some kind of independant way to test a source. I'm sure it wouldn't be cheap but it would at least be peace of mind for people.

[panic]

What a complete and utter waste of time! I'm beginning to think that the primary function of the NHS is to deny people healthcare.  

Not only would the urologist not prescribe me pentoxifylline, but HE'D NEVER EVEN HEARD OF IT! He said he'd never read a study that proved it could be used as a treatment. Now, maybe I dropped the ball by not remembering to take the print-outs, but he's a urologist for christ's sake! He should have at least heard of it! And the print-outs wouldn't have made the slightest difference; he'd made his mind up before I even entered the room. The damn cretin. Why not just replace the doctors with some kind of self-diagnosis wall-chart? It couldn't possibly do a worse job.

So now I'm forced to be my own doctor, researching my own treatment, sourcing my own drugs! What an absolute disgrace! All I can say is, thank god for illegal internet pharmacies. And to top it all off, my file, with all my intimate health details in - INCLUDING A DIAGRAM OF MY PENIS! - was just left on the counter in the waiting room, where anyone could have read it! My advice is, if you live in the UK, don't even bother going to see your GP.

But maybe I should count myself lucky - the pentox is working great. No pain, no lumps, no shrinkage, no problems getting it up, and it's almost completely straight again. I decided to order from alldaychemist. Their pentox is dirt cheap and their delivery is surprisingly fast (faster than I'd hoped, actually) and relatively discreet (still has dodgy-looking Indian postmarks etc, but doesn't have HEALTH PRODUCT written on the box). The drugs seem perfectly legit, but I don't suppose there's much call for counterfeit pentoxifylline. The only downside is that they totally spam your email address.

So, fingers crossed, you won't be hearing from me again. I'm going to keep buying my pentox off the internet. It's not the perfect solution, but it'll have to do. Good luck, everybody! I hope you all find something that works for you, and don't let the doctors get you down.

[newguy]

It's a shame you didn't take the print outs as it may well have been an opportunity to educate him. That said, being a urologist, you'd think at the that he'd have heard of this treatment, or at the very least looked into it as a result of you mentioning it to him. What was his name? On the NHS you can ask to be seen by a specific urologist. In which case I would advise that people get refered to see Dr David Ralph. He's a well respected urologist with good knowledge of peyronie's (especially the surgery side of things). Until maybe a year or so ago, it seems that he prefered tamoxifen over pentox. However, via here and my blog I have advised people to take evidence to him and know for a fact that he now prescribes pentox. The one stumbling block may be the length of time that he and other urologists are likely to suggest this treatment for. Personally I believe that taking pentox for a year + (after pain disappears) is a good idea, whereas it appears to be common for urologists to prescribe it for 6 months max. It's a well tolerated drug, and some studies for other conditions suggest that if you stop taking it too soon there can be a rebound effect (http://www.ncbi.nlm.nih.gov/pubmed/16260695). Therefore if a person does find that the treatment is uncommonly useful to them, it might be a good idea to stay with it for a while.

In cases where it isn't possible to gain access to long term pentox from a urologist, I don't blame people for going the online route. I've done it myself. I would like find a way as a community of testing one or two sources though to ensure that we have ultra reliable sources to recommend to those who find themselves in situations such as yours.