I've been searching for help for a long time, over 30 years at least. About 2 months ago I was prescribed pentoxifylline (trental) as a long shot for the erythromelalgia, which has been getting progressively worse, and had been changing even more rapidly than before.
So, I researched the drug and gave it a shot. The side effects of headaches and stomach pain/bloating and the lovely belching were bad, really bad, but I was seeing changes in my feet. The flares were getting much less severe in both intensity and area that was affected. A dramatic change, after finding nothing that would help before in all the years of searching. So what if i couldn't do much else but complain about my stomach.
The drug also held hope for the sarcoidosis I have. So I persisted despite the pain and discomfort. At least I wouldn't be worrying about getting my toes amputated, as my skin changes meant that I always have open sores on my feet and I have developed diabetes. It is a very real concern of mine. I was very motivated and excited to have something that was actually reversing damage.
But, I noticed some heart flutters. I have a lot of stress, and tried to blame that. The heart flutters gave way to pain and increasingly irregular heartbeat. Enough that I decided yesterday to stop taking the drug and go back to the doctor.
I can't explain how discouraged I am. I had read that it could keep improving diabetic neuropathy for up to 4 years. I thought, "Wow, maybe I COULD wear shoes again, go hiking, play in the snow again..." I dared to dream of better. It has only been in the last 5 years as it has progressed that I realized how much I have lost. I dared to dream of better.
So sorry this didn't work for you, I can imagine the disappointment you are feeling. I pray that something will be discovered that helps eleviate the symptoms of erythromelagia for all of us. Try to concentrate on the positive things that you have in your life and continue to be strong.
I am so sorry your meds you sought so long for and finally gave you some relief are causing such severe side effects. THat would be very discouraging. Are you sure it is the medicine? I have an autoimmune condition as well as EM and I have had periods in the last 5 years since ill where I have had a few months at a time with rapid irregular heart beats and crazy high blood pressure when I am usually normal. This is just something that happens to e periodically then I go back to normal with no medication changes. Is it possible this is a symptom of your Sarcoidosis? How long have you stopped your meds? Did it improve right away? Maybe you will be able to get back on them.It is encouraging to me that you have found something that has helped as I have yet to but still trying. I just started Mexelitine and that has a possible side effect of irregular heart beat and even sudden heart attack but so far ( 3 weeks) I have not had any side effects. It is too early to tell if this will help with my EM.
I go through most days in acceptance but certainly have those days it gets to me that's for sure. I too have lost so much. My job as a flight attendant, The ability to see my family because they all live so far away and I used to just hop on a plane and see them. I was able to retire with flight benefits although I am only 41 but am not well enough to travel. I almost never leave my home other than to see the doctors and have lost most of my friends because I cant visit them in their homes or go out to where they go. That isn't even taking into consideration the daily, nightly pain that doesn't have an end in sight. All of that said it has become my new normal. This is just the way it is.
I am fortunate to have a loving husband, air conditioning , two sweet cats and the ability to talk to my family over video so at least I can see my nephews grow. I also have my never ending determination. I won't give up trying. I can't give up trying.
I hope you are able to get back on the meds or try an alternative to it that helps. I hope when you wake tomorrow you have your dream back of being better. We must keep that hope. I believe some day I will be better. Perfect??? maybe not. Better ...absolutely . Who knows maybe even perfect down the line as they discover new and better treatments all of the time and this great group of people willing to come here and share so we too can benefit from their experiences and treatments.
I am so sorry to hear that a medication that seemed so hopeful may be causing serious cardiac side effects. Your were wise to stop for now. You can now see whether the cardiac issues resolve or whether they continue despite discontinuing the meds. I have found that when my EM got worse I developed greater cardiac symptoms especially during bad flares and at night when my feet were red hot and my upper body was freezing.
There may be other options for you, There are so many combinations of medication and supplements possible, that there is always hope. I had a similar problem with Lyrica--it was really helping but I could not increase the dose any further no matter what I tried because of serious side effects. But we then added a tiny amount of Cymbalta (1mg from 30 mg capsule) and have been increasing it very slowly (5 little pellets from inside the capsules every 5 days) and it is really starting to help. Often these side effects occur because our standard dosages are too high for many of us, especially smaller women and fast metabolizers.
Also, I have found that to deal with the emotional side of things I do EFT (Tapping ), meditation and self-hypnosis. These are not difficult--anyone can learn to do them. Research suggests that techniques that result in a meditative state can help with pain management. One of the things that we are trying to do is calm the amygdala to reduce fear and worry about the pain and the impact of EM (and flight or fight stress responses) by telling our Anterior cingulate cortex that despite the pain we are SAFE. Research at Stanford University has shown that we can train our brains to calm stress centres and thus reduce pain severity.
So, don't give up. There is still hope. I have become very proactive as a result. I am working with a school of engineering in Canada to see if we can develop a shoe with a sole that will keep the temperature of our feet cooler. It would be remotely controlled offering a range of settings through our cell phones and use micro-coolant technology. Believe it or not, it is a real engineering challenge---apparently much harder than sending things to a space station!! Hopefully by next summer we'll have a prototype completed.
I wish you well. We're all pioneers in dealing with this disease.
Otrame, I am so, so sorry to hear that the relief you had found with pentoxifylline has not worked out due to its side effects on your heart. I have never found anything which improves my foot pain enough to allow me to go on hikes, walks, or even stand for more than a few hours at a time. If I ignore the consequences which are to follow, I CAN do those things, but once I stop, then the foot pain is really bad, and I know I will have difficulty sleeping that night due to the pain. I am thankful that the drugs I am on (gabapentin and doxipen) take the edge off the foot (and head) pain, but I have to constantly restrain myself from doing activities which I know will bring back the pain with a vengeance. I wish you peace with your mental struggles with your continued limitations, and hope the doctors will find an alternate drug that will work well for you without the horrible side effects. ~~Marie
I wanted to reply because I felt your sadness and know what that feels like. I am "lucky" yes I consider myself very very lucky that my EM is connfined to my feet and lower legs and we know that it came as a result of my long standing eating disorder so there is some hope that if if I can reverse some of the damage from my years of poor nutrition, it would help the EM.
I tell my doctor that there is the actual PAIN from the EM but then there is the emotional ANGUISH which is equally if not more painful. Are you absolutely sure that the pain and fluttering is from the drug? Hopefully your doctor can determine that- and perhaps it isn't.
I know you are a real fighter- I know also that there is great hope in the EM community about the Xenon study and another drug in the work ( I believe) by Pfizer. You must still have hope but I am sure it is awful fighting for 30 years. But you are fighting and I salute you. You are a brave soul- keep the faith. I am sure you are doing so already but we have to have our faith because I do believe that there will come a day ( not too far away) when we have a drug that will help with EM.
That last sentence says it all. I am sorry you are sad but it is very understandable. I was put on effexor for my depression and ever since I have been doing great. Either the drug is doing it or it is just flat out a miracle from God. I am very grateful because I know my life could be so much worse. I hope you find something that will help you.
Thank you all for your replies. I rarely have the courage to share online, I mostly lurk. It has been really weighing me down in the last few years all that I've lost through disease. The glimmer of hope was ...strange. Unexpected. And the disappointment was sharp. And could not be understood by those around me who haven't battled with it.
But, I don't know if there are alternatives that I haven't explored, and everyday someone shares information that has lead to my own growing education. I am calling my doc tomorrow and scheduling in another round.
You remind me of me and other members. That horrible, and understandable, feeling of disappointment and sadness that you expressed so well and from the heart.. I think all of us who read your post knew exactly how you felt and empathize. Please post more often. I find sharing my experiences helps me to cope better. And if I seek help here someone has always responded. The people here are very kind. I am so glad to hear that you are going back to investigate more possibilities.
I find my family have no real understanding of what I experience. Even when they see me in pain it is still sort of in the abstract for them. When I come here I know I am being heard and understood.