Erythromelalgia Anyone?: Has anybody... - Scleroderma & Ray...

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Erythromelalgia Anyone?

AMDP
AMDP

Has anybody else been diagnosed with Erythromelalgia and if so how was it treated? I've been given low dose Venlafaxine which helps but the side effects are too awful for me to continue on it so was wondering if anybody knew of an alternative. Ax

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Hiya ! ah, sorry to read of your diagnosis, Im sorry to say I cant help you much with your question, but I was intrigued to see you mention Venlafaxine, as isnt that an anti depressant ? I have been offered, in the past, fluoxetine (Prozac) to help with my raynauds but I didnt want to go down that route ! I think venlafaxine is also an ssri (selective serotonin reuptake inhibitor) so this could be a class effect in relation to treatment ! I also had a friend who used to take venlafaxine and if she had a glass of wine, she would be sick almost immediately !

I take each day at a time, and if I am having an 'off' day, I write the day off and just get on with enjoying myself, doing things that I like to do, hoping that I may feel better tomorrow !

I hope this helps you a bit, Living the dream :) xx

Hi, Living the Dream, I take it that is ironic?

Yes it is an SSRI and I really really really didn't want to take it. I took one pill and the side-effects were so horrendous I couldn't take it again. But I woke up with almost normal feeling hands and feet for the first time in years- so it does work.

There must be another way,

All the best

X

Yea - i have to keep reminding myself that I am living the dream with sytemic sclerosis and raynauds ;) haha ! xx

I know the feeling- I've got the same. How long have you had it?

Ax

I have also been diagnosed with Erythromelalgia along with Raynauds! So I'm either freezing cold or burning hot, no happy medium. I do take Liquid Prozac which my consultant suggested after having tried everything else which did not work. It does help with both for me but I still get attacks but they don't last for quite as long. I just try to keep my body temperature on an even keel so things like gloves are on & off depending how the raynauds or Erythromelalgia is.

Many thanks, that is a help, I have heard you can get these sorts of drugs in liquid form. I shall ask my GP.

All the best,

Ax

Hi!

I have erythromelalgia as well as raynauds. I wake up every morning with burning feet and it affects my hands and feet during the day so I generally go from one extreme to the other which can be a little frustrating. A couple of years ago my consultant prescribed a drug called carbamazepine for the erythromelalgia, at first I didn't notice any difference or side effects but after a few weeks I became really ill and discovered the drug was causing hepatitis, my liver wasn't working properly so I had to stop the drug straight away and haven't tried anything since-i think that experience put me off a little.... I haven't found anything that works for my raynauds either so I try to deal with both as best I can although went to the gym after work today but my feet were burning so gave up after a while.

I hope you find something that works for you :-)

OMG sounds horrific. Hope life has improved for you now.

Ax

It's all good, It wasn't fun at the time but once I stopped that drug I got better reasonably quickly! It's funny how some drugs don't affect one person but can cause major problems for another....I guess we're all different.... x

Glad to hear it. I'm just about to try a liquid one so fingers crossed.

Ax

It's right that a few SSRI's help some with EM as do meds for treating epilepsy (it's a side effect they found to help people with EM that just so happens to occure with these meds). Sadly for me as yet everything I've tried doesn't work or the side effects out weigh what little relief they do give, and believe me I've tried taking just about everything the doctors know about when treating EM)

Right now I'm in the process of having possibly found a medication that could well be the answer to all EM patients preyers (found simply by chance & even available over the counter). My Rheumy doctor is very excited about it & more will be known about it & if we are right with this at my next appointment in May.

BTW, I also have Raynaud's (diagnosed for 26 years) & Erythromelalgia (EM diagnosed for 3 yrs & 6 yrs undiagnosed. Had it for 9 years in total)

Hi, that sounds interesting I look forward to hearing more especially as I'm struggling with the side effects of the liquid SSRI I'm on now taking. Ax

Many members of the Raynaud's & Scleroderma Association have both Raynaud's and erythromelalgia. The treatments which we have been told which help are gabapentin or pregabalin (used to relieve neuropathic pain). Low dose praxilene has been tried and tested to help in some cases and others have had iloprost infusions which may sound odd as this increases the blood supply but appears to work for some. Check with your rheumatologist to see if any of these medications would help you.

AMDP
AMDP in reply to AHM42

Ok, thanks. Ax

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