Hi all, I have just recently joined the group so thanks for having me. I was diagnosed earlier this year with Erythromelalgia but I have some questions about it. First of all I have to tell you that my GP's seem to know very little about this condition and therefore I need info from others who also have it. I was diagnosed by a vascular consultant who was very nice but didn't go into any detail about it other than to prescribe Nibivolol and Duloxetine and tell me to stop smoking. As I am also hypothyroid and taking levothyroxine along with HRT along with Paroxetine for anxiety, I didn't really want to add any more tablets to the mix. I have however started the Nebivolol one tablet at night. One week in and it isn't making any difference. Should I persevere with this? I wondered if anyone knows whether this dilates the small blood vessels and if so would this not make my feet worse? Thanks Dee
Hi Dee, have you checked out our 'useful resources' section for information and links on EM ? There may be some helpful stuff in there that you could share with your GP or use to help inform discussion.
HI Dee, It's not surprising that your GPs don't know much about it, not many do. I had to show my GP the home page of the association the section on "What is EM" so that he could understand. It is said that Nebivolol helps, but I wouldn't know about this as I am allergic to beta blockers. I would say to carry on with it unless you speak to your doctor first. I understand our reluctance to take anything else being on lots of other medication as very often they can interact. That happened to me once and so now I look on here where there is somewhere you can check for drug interactions before I take anything new.
Hi Sheltielife, Thanks for the reply. I have spent almost all day on the internet looking for various drugs that are said to help but in reality I don't want to go down that route. I don't know if it's my imagination or not but I think that the Nebivolol is making my feet and hands swell up a bit more than usual and as it is not making the flares any better, I think I will stop taking it tonight. I have in my cupboard a box of duloxetine that was recommended along with the nebivolol and although I'm reluctant to start it I am getting desperate for a good night's sleep so I may have to reconsider. The problem is that I am currently taking paroxetine for anxiety and when I try to taper off of this, the effects are awful and I have to back on it. The vascular consultant who diagnosed me with EM said that I could just swap one for the other but my GP said that I had to taper off one before starting the other. I just don't know what to do about this. Any info would be great. I have ordered a chillow today, I will see if that helps. Dee
Jules G said:
Hi Dee, have you checked out our 'useful resources' section for information and links on EM ? There may be some helpful stuff in there that you could share with your GP or use to help inform discussion.
Hi Dee, Of course I am not a doctor so don’t rely on what I say, but the Nevivolol can cause swelling. Can I ask do you have high blood pressure? That medication is used to lower blood pressure, so if your blood pressure is normal it could make it too low. It also causes tiredness.Much depends on the dose you are on, if you are on a high dose stopping it all in one go could cause problems. Personally if it was me I would check again with your GP before you stop it.
Thanks Sheltielife, I have been using biofreeze on my feet and just applied the 3rd dose. I only bought it this morning so I'll see if it helps tonight and try to get appointment with GP tomorrow. Dee
I am so glad you are attempting to see your GP. I hope the biofreeze works for you, unfortunately I can’t use things like that as I have ulcers on my feet.