Other treatments for Behcet's

[amietamant]

I don't see many people here mention that they've been on Trental (pentoxifylline) for Behcet's ulcerations, arthritis, and fatigue. It's inexpensive and has mild anti-TNFa properties like the biologics (Enbrel, Remicade, Humira, etc.), with fewer side effects and little risk. Low-dose nicotine patches can also work well for oral/skin ulcers - see the research.

There are other prescriptions useful for specific Behcet's symptoms that I don't see used often in the U.K., probably because physicians are unaware or uneducated in their use and effectiveness. Colchicine often doesn't work in Western patients and can cause lots of GI side effects. Prednisone should be reserved for aggressive flares, not as a continuing medication in most patients. Methotrexate can help symptoms and it's cheaper than biologics.

It's common for Behcet's patients to need other drugs too: anti-depressants to help manage mood and pain; stomach acid meds; anti-nausea drugs; NSAIDs, migraine meds; topical hydrocortisone; viscous lidocaine, etc. Most important on top of all this? Rest, and lots of it.

[tamirra]

Hi, my daughter has tried the nicotine patches but made her very sick, think the mg was too high.x

[Jazzy21]

I am on Trental. I have found it good but not for my terrible joint pain. Has had great effect on my ulcers. I am relieved that someone is on this as I have never heard of anyone else.

Yazzy

[Hidden]

Hi, thanks for the information. I think most of us know about rest and the use of medications listed in your last paragraph,

Could you qualify your statements in paragraph two please. Is this your opinion based on personal experience or based on medical research or something else?

Thank you.

[MrsMc]

I was put on Trental about 10 years ago. Tried it for about a year but had such terrible pains in my legs and face that I stopped taking it and it didn't have any effect on my ulcers, fatigue or joint pain. Good to know it works for some people.

Linda

[Hidden]

This is not a criticism of any of the above posts, which contain some useful and interesting information, it is my opinion.

We do have some very well educated and experienced Specialists and many treatment options. Side effects don’t apply just to Colchicine; it can be said of Methotrexate and other medications. Some people find Colchicine effective and do not suffer side effects.

If any of you are concerned about any of your medication, such as long term Pred, please talk it over with your Specialist and if you research online, please use reliable sources as sometimes it can be incorrect or misleading.

I think it's important to distinguish between opinion and fact so that it cannot be misinterpreted.

[devonshiredumpling]

amietamant

I've just come back on line after sleeping the clock around twice - something that happens to me from time-to-time and which I've got used to. I was disturbed to come back to your post however.

You write with confidence and apparent knowledge but you do not cite your resources. And I find the almost blanket disapproval of UK doctors quite offensive.

My problem with your post is that we have patients from each end of the Behcet's journey, from those who have been suffering for many years and are more or less confident in their treatment and their specialists and, more importantly in this respect, newly diagnosed patients some of whom are very frightened of what lies ahead and who are more than a little confused over the drugs regimes available to us.

How do you think your whole scale denigration of their medication and specialists makes them feel. For those who have just started colchicine with big hopes to read that it probably won't work for them because they are western must be soul destroying.

I use colchicine with great effect and no side effects. I am western.

Please could you come back and l let us know the research you are basing your claims on?

Thank you

[amietamant]

I wouldn't have commented if I thought others would get their knickers in a twist. I'm highly qualified to discuss Behcet's and its treatments, but I guess I won't post here anymore.

I was saying that colchicine should probably not be a first-line treatment for non-organ threatening symptoms of BD in Western patients because a higher percent are non-responders and more likely to have intolerable GI side effects at a therapeutic dosage. That doesn't mean it won't work in some patients; I just think it's preferable to try pentoxifylline first.

Do some PubMed research on colchicine for Behcet's and other treatments before calling my statements "claims." Read everything that's been published on the disease over the past 10 years and discuss the studies with experts. Go to internationall BD medical conferences and listen to early results of studies. It's counter to your best interest to jump on me and say you're offended.

Signing out of this site...