LDN

Has anyone with urticarial vasculitis tried Lowdosenaltrexone ( LDN) I,m reading good reports about it but would prefer to trust this sight with an honest unbiased opinion. I woke up at 4am this morning with another flare, i feel really out of sorts , nauseous, pains in my face, and thinking " not again " i,ts an almost monthly occurrence, altough this time it has been 9 weeks, ,The rash is pretty extensive and it,s burning, I am on 30mg Prednisolone , but it,s not doing anything about the reoccurrence, Azathioprine was suggested at my last hospital visit, but as i also have an under active thryoid i didn,t feel i wanted to compramise my imune system even further. Any thoughts on this would be most welcome

7 Replies

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  • Hi

    Sorry to hear of your challenges and I hope you get some relief soon.

    This topic was covered in a recent post at bit.ly/NaCNCb. Unfortunately it appears some of the people citing positive results have a vested interest. There's no scientific evidence that this compound has any benefit but the placebo effect may make it worthwhile.

    Healthy wishes.

  • Hi Martin i hope your not getting a lot of replies from me, i am trying to send a reply but it doesn,t seem to be working, anyway i,ll try again, thanks for you reply i wont even go there i,m feeling rubbish at the moment and i don,t want to feel any worse, i knew someone on the site would have some knowledge of it, I shall do as i usually do just carry on and hope i feel better soon, I just wished i didnt get a flare so often, i,m beggining to feel as though i,m never without it. Thanks

  • hope you feel better soon,

    regards,

    sandra

  • thanks sandra,ive had a lay down this afternoon, but it hasn,t made a lot of difference,i feel as though iv,e got the flu without the cold,and feel worn out, and i haven,t done anything.it,s difficult sometimes to keep positive, but i,m not one to give in easily so when i feel better, all will be forgoten until the next time. thanks once again i,m feeling quite sorry for myself just now.

  • Hi Jack. As a fellow sufferer of UV I understand your pain. You describe my flare-ups exactly, Flue without the cold is a good choice of words. After a couple of years on Prednisolone I was put on Azathioprine in 1999 as a better alternative to constantly increasing the steroid doses. It has worked well, to an extent, as instead of flares every month at least I now only get 3 or 4 much milder ones a year. Because of the Aza I managed to decrease the Pred to 1mg a day maintenance dose, and when I get a flare just increasing it to 5mg a day for 2-3 days gets me through it. Please give it a second thought, talk to the medics and Rheumatologists about Aza, it has been a godsend for me, but obviously doesnt work for everyone. You will always need very regular bloods but I have faith in my Rheumys, they do keep a very close eye on mine and so far so good. :)

  • No multiple messages JackRussell so no worries. Sorry I wasn't the bearer of great hope but at least you've discovered you're not alone here and been offered some positive hope for the future.

    Healthy wishes.

  • Hi Martin, i,m feeling a little better today, but had the shakes/tremors in 2 sessions this time and they last about 20mins a time i suppose thats due to my temperature going to 38.9, and it didn,t seem to want to come down either this time, I was in touch with John over the weekend and he feels that 9 flares in 9months is not a flare, but a disease not under control,and putting it that way he,s right. I will have to try and get some other form of prevention rather than just the Prednisolone when it happens. I sometimes feel I,d be better of with a broken arm i might get a little understanding then, it,s quite isolating isn,t it? But " hey" todays another day and your quite right there is always hope.PS i,ve had this 20years but its only been in the last year that i,ve had this trouble so i suppose i could say i,m lucky !!!

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