Pentoxifylline

Greetings.
I have been diagnosed with Raynaud's, which has caused poor circulation in my eyes, leading to a series of rather unpleasant complications... Out of my own volition, I have started taking Trental, which is actually Pentoxifylline. Does anyone here have any firsthand experience with this medication—does it actually provide relief, what are the side effects, and so on...

So, did anyone actually get a prescription for it, and from whom?

I deal with Raynaud's myself, so this is right up my alley. Honestly, nobody's been able to treat it for me yet.

melloworca6 said:So, did anyone actually get a prescription for this thing, and if so, who?

I suffer from Raynaud's, so this hits close to home for me. Honestly, doctors won't treat it with anything at all.

It’s a medication for poor circulation, but it isn't on the FDA's approved list.

So, who’s actually prescribing this stuff? And does anyone have any idea what the cost looks like?

I did a little digging on it, and apparently, it's used for poor peripheral circulation. Honestly, the side effects don't look too terrifying to me.

melloworca6 said:Who actually writes the prescription for this stuff? And does anyone even know what the damage to the wallet is going to be?

I did some digging on it. Apparently, it’s used for poor peripheral circulation. Honestly, looking at the side effects, they don't seem all that terrifying to me.

I don't think you can just pick it up off a shelf at CVS, though I can't say for certain. Usually, you'd need a neurologist, an endocrinologist, or a rheumatologist to sign off on it. Seriously—talk to your own doctor first. Don't go playing chemist on your own.

I'm definitely not just going to start playing doctor with myself. I'm going to check in with my immunologist first to see what they think. I really hope there's something that actually helps, because this situation is getting ridiculous. Every single winter, things just seem to get worse and worse. 😢

I was diagnosed with Raynaud's about 15 years ago. Roughly 12 years back, they also identified poor circulation in my peripheral capillaries within my eyes. When I approached my ophthalmologist to ask if there were any treatments available for this, she simply told me there wasn't... nothing but Ginkgo. But even that hasn't done a thing for me....
I recently found myself falling down a Google rabbit hole again and stumbled upon Pentoxifylline.
The medication has been on the market for about 10 years now. Yesterday, I stopped by a local pharmacy on my way home from work to inquire about it. They informed me that it doesn't actually require a prescription, so I went ahead and bought it, and I've started my regimen.
Supposedly, one should begin to see results after somewhere between 2 to 8 weeks.
This is actually the first time I have ever taken medication without a doctor's oversight; I am typically a very hesitant person when it comes to drugs, but I have simply reached a point of profound disappointment with certain physicians...

vividsailor7, what does it mean specifically when something isn't on the FDA's approved list?

melloworca6 said:Who actually handles the prescription for this? And do you happen to have any idea what the total cost might look like?

I’ve been doing some reading on it myself, and from what I can gather, it is prescribed to address poor peripheral circulation... Honestly, even the side effects don't seem all that intimidating...

$15 - 20 tablets
The standard dosage is either one tablet twice a day, or in more severe cases, three times daily...

So, we're talking $50 a month. Honestly, maybe it’s cheaper to just grab it across the border in Mexico or Canada.

I might actually look into that. It would be nice to skip the whole runaround with my GP just to get a prescription, especially since prices over there can be half what we pay here. But then again, you can't just walk into a pharmacy and expect them to hand it over without a doctor's note.

As for Ginkgo, I've tried it and felt absolutely nothing. For me, it was a total wash. Seriously though, let me know if this stuff actually works for you. If it does, I'll bug my immunologist about it and maybe give it a shot myself.

melloworca6 said:So, $50 per month. Maybe it’s cheaper to pick up across the border in Mexico or Canada...

I suppose I might actually look into that, and perhaps even try to bypass the hassle of getting a standard prescription from my GP just to buy it in a neighboring country where medications tend to be half the price... though, of course, no pharmacy would hand it over without some kind of official doctor's order in hand.

As for Ginkgo, I’ve tried it myself and felt absolutely no difference whatsoever; it simply did nothing for me. Do let me know if you actually feel better using this instead... if it truly works, I might just have to ask my immunologist about it so I can try it too...

I'll let you know, though it might be a month or two before I can tell you...🙂

It doesn't matter, just let me know if this stuff actually works. 🙂 I'm crossing my fingers that it helps ease the symptoms. 🙂

For me, it would be a huge deal just to stop my fingers from turning white and flooding with blood the second I step out into the cold. Right now, it’s a total disaster after only five minutes.

Roger Smith64 said:vividsailor7, what does it actually mean when something isn't on the FDA's approved list?

The FDA handles everything: they greenlight new drugs for the market, vet them for safety and efficacy, issue manufacturing licenses to producers, and authorize the import and export of pharmaceuticals. That’s the breakdown straight from their official site. Here.).

Regarding the use of this medication for treating Raynaud's phenomenon, there were several studies back in the late eighties and throughout the nineties suggesting its potential. Some even went as far as asking, "Could this be that new revolutionary drug?"

As time moves on, more recent studies and research papers have largely moved away from focusing on it. You might see occasional mentions regarding its potential application for mild cases, but calcium channel blockers like nifedipine remain the standard. Usually, though, they aren't even the first line of defense; they typically come into play only after non-pharmacological approaches—like staying out of the cold, managing stress, or keeping warm—have failed to do the trick.

The drug in question—Pentoxifylline—is currently indicated for treating intermittent claudication. Essentially, we're talking about those muscle cramps triggered by atherosclerotic changes in the arteries of the limbs.

Will it work for you? I can't say for certain. But I'm certainly pulling for it.

melloworca6 said:It doesn't matter, just let me know if it actually works for you. 🙂 And I’ll be crossing my fingers that it eases the symptoms. 🙂

For me, it would make a world of difference if my fingers didn't flood with blood and then turn ghostly white within the first half hour of stepping out into the cold... currently, it becomes a total disaster after just five minutes.

Regrettably, I had to discontinue my use of it... Yesterday, I went out for a run, and about two-thirds of the way through my usual route, my heart began behaving erratically—palpitations, arrhythmia... My blood pressure spiked to 147/99 and my pulse hit around 100. I've dealt with minor irregularities due to training before, but never anything quite like this. It was a terrifying experience; I truly thought I was finished...
The warnings state, among other things, that those sensitive to caffeine and individuals with low blood pressure should avoid it. I happen to have both. Furthermore, arrhythmia is listed as a side effect... 👎
The fact that I suffered such a reaction does not mean it will be the same for you... 🤷
I am returning to garlic, ginger, and chili peppers... 🙂

P.S. Before starting, I did consult with my physician for advice—she suggested I give it a try. So, it wasn't exactly a decision made entirely on my own, though she couldn't have predicted exactly how my body would react either...

Maria Fisher46 said:Returning to the topic at hand regarding the application of this medication for treating Raynaud's phenomenon... one might observe that during the late eighties and throughout the nineties, there were several papers and studies suggesting this drug as a viable option; some even went so far as to feature titles phrased as "Will this be that new revolutionary drug?"...

However, as time has marched on, more recent studies and research papers simply no longer place it at the center of clinical interest. In certain places, you might see sporadic mentions of its potential use for milder forms of the disorder, yet the preferred treatments remain calcium channel blockers—specifically nifedipine—though typically not as the primary first-line defense, but rather when non-pharmacological methods, such as avoiding cold temperatures, managing stress, and staying warm, fail to yield results...

As for the drug in question, Pentoxifylline, its current indication is specifically for intermittent claudication, which refers to those spasms occurring within the arteries of the extremities due to atherosclerotic changes...

Whether it will provide relief for you, I cannot say for certain, but I am certainly crossing my fingers that it works...

I appreciate the detailed response. But, as I previously mentioned, it hasn't worked for me. If you happen to have any experience in this field, perhaps you might offer some advice? Raynaud isn't actually my biggest concern; it's the circulation in the capillaries—specifically in the eyes... Is there any other medication that acts upon microcirculation?...

😲

Yeah, I remember hearing about some medication for Raynaud's—can't recall the name right now—and I really wanted to get my hands on it. But then I read somewhere that people with low blood pressure shouldn't touch it because it can drop your pressure quite a bit. Since my blood pressure is already bottomed out, I wasn't about to go playing chemist with myself.

Plus, dealing with thyroid issues means I get tachycardia, too, so I'm not sure how smart it would be to mess around with drugs like that. Then again, this Raynaud's syndrome is driving me absolutely insane. I need to do something, even if it kills me, because it’s becoming unbearable. Every winter it just gets worse. Last year, everything started flaring up along with all the usual crap, plus these stabbing headaches at the base of my skull whenever I'm out in the cold. They don't let up until I finally warm back up. 😢

melloworca6 said:😲

Yes, I recall hearing about some medication for Raynaud's—I can't quite recall the specific name—and I had considered trying to get my hands on it, but then I read that people with low blood pressure shouldn't take it because it can drop your pressure quite significantly... so I didn't dare experiment with it, especially since my own blood pressure is already dreadfully low.

And given my thyroid issues, I deal with tachycardia as well, so I really don't know how wise it would be to mess around with drugs like that. But then again, this Raynaud's syndrome is driving me absolutely insane; I feel compelled to do something, even if it kills me, because this is becoming utterly unbearable. Every winter, things just escalate... last winter it started up along with all the usual nonsense, including these stabbing headaches at the base of my skull whenever I'm out in the cold. They only subside once I've finally warmed up. 😢

In my estimation, I believe I was reacting to this sensitivity toward caffeine. Who knows, perhaps it might actually help YOU. There are certain medications—alpha or beta-blockers, I believe—that block those alpha and beta receptors in the nervous system which typically trigger the blood vessels to constrict when exposed to the cold. And there is also what Nicholas Myers mentioned. The only advice I can truly offer you is to attempt regular physical activity, maintain a high-quality diet, and strictly avoid stress. I haven't been cured, but it did provide a fair amount of relief...

Roger Smith64 said:I think I was actually reacting to that whole caffeine sensitivity thing. Who knows, maybe it’ll help YOU. There are certain medications (like alpha or beta-blockers...?) that block those specific receptors in the nervous system that usually trigger blood vessels to constrict when you get cold. And I agree with what Nicholas Myers said. Honestly, the best advice I can give is just to try staying active, eating right, and keeping stress levels down. I haven't "cured" myself, but it definitely helped quite a bit.

Both of them are antihypertensives, and frankly, beta-blockers can actually make the symptoms worse.
Just like Nicholas Myers pointed out, research shows the preferred treatments are calcium channel blockers and ACE inhibitors.

Roger Smith64 said:http://en.wikipedia.org/wiki/Alpha-blockers

There’s also a Wikipedia page on Raynaud's phenomenon that mentions using alpha blockers. However, those specific ones aren't even registered here in the States, and honestly, just taking standard alpha blockers can cause your blood pressure to absolutely crater.

Roger Smith64 said:I did a little digging online recently and came across Pentoxifyllinum.
I noticed it’s been out there for about a decade now. Stopped by a local pharmacy on my way home from work yesterday to ask about it, and they told me I didn't even need a prescription. So, I just grabbed some and started taking it.

This is actually the first time I've ever decided to self-medicate. Usually, I'm pretty hesitant about taking anything without a doctor's okay, but honestly, I've just lost a bit of faith in certain physicians lately.

Hrvoje, what does it actually mean when you say something isn't on the FDA's approved list?

Actually, that's not right. You don't need a prescription for it!
And it's also not true that it's not on the Halmed list!

www.fda.gov

There is a medication available for patients under the name Pentilin in the database!

You can pick it up with a private doctor's prescription, $14 specifically for a pack of 20 tablets at 400 mg.

Look, if a drug isn't on the Halmed list, it basically means it hasn't been cleared for distribution here in the States, so pharmacies can't legally sell it off the shelf. There are exceptions where you can import something via a private prescription that then needs approval through Halmed. Just keep in mind, getting a drug like that sourced can take about three weeks!