I was wondering if anyone had heard of or is taking Arthotec for EM. Aspirin was not effective for me. I used to take gabapentin but was switched to Lyrica for FMS.
I am still new here and so glad I found this site. I am trying to get into Stanford this year after living with EM since 2008. I got my Dx from a Derm who had to check his PDR. Needless to say in my small town I have yet to find a doc who has seen this disease before let alone treat it. Any input would be great! thx
I have taken Arthotec before. Arthotec contains misoprostol. It is the misoprostol that has been known to help a small percentage of people. I know it also contains aspirin. It was not effective for me. Personally, I believe that if aspirin was not effective for you than the misoprostol contained in the Arthotec will not be effective. I see your on Lyrica, have you tried Lyrica in combination with Cymbalta or Effexor?
I would be careful with Effexor for EM. I can't imagine how Effexor would help, but maybe you can enlighten me. I have two family members who suffered severe withdrawals when they had to stop taking Effexor. In their cases it was prescribed for anxiety and depression.
You have Fibromyalgia also? I have it & CFS. Do you have both? If so then wouldn't the EM be a secondary pain syndrome for you? Maybe I'm thinking of someone else that said their EM was initial diagnosis.
I will probably be trying the Lyrica soon too. I have been afraid of possible side effects because I basically have tried every drug out there to treat Fibro/CFS & get weird side effects. My pharmacist pointed out to me that Lyrica doesn't have any weirder side effects than all the other drugs I've tried. :) Effexor is one I haven't tried either & I read some where that both it & Lyrica are used to treat EM. I realize Effexor is an antidepressant but sometimes those help with pain also.
So have you found any improvement with the Lyrica or is it too soon to tell? If you feel like it keep us posted on how it is working for you & at what doses.
Hi, I'm from Cambridge, England. It's quite difficult to know your meds as ours are probably under a different licence name.
The only thing I've been prescribed is Amyltriptiline and Naproxen. The Am is usually prescribed in higher doses for depression and Naproxen for pain relief. I tried cutting out the Naproxen and did notice a small difference, then tried the Am and I felt as though I was on the ceiling!!!! So if anything, the Am is keeping my depression at bay due to my Am. Funny old world hey!
First of all I so feel for you. My doc left my practice and a new doc said I was the 2nd person she had ever known with this.
How can something so debilitating not be known to doctor's!!!! "Excuse me doctor, take a look at my damn feet, they are black at the moment and I'm really quite happy about that, hang on a few mins and they'll start to not appreciate your central heating".
Initially (well after 18 months to get a diagnosis) I was given Gabapentin but they did nothing. Never heard of Lyrica, but I shall google and see if its available in the UK.
First of all, Lyrica is available in the UK, it's generic name is pre-gabalin.
The problem with getting EM known to doctors is that to remember a disease, a doctor first of all needs to have been taught about it and then either encountered patients with the disease or been given an easily remembered way to diagnose it. GPs are doctors who know something about pretty much everything, but if you present with these bizzare symptoms, the doctor has in all likelihood never been taught about the disease. My dad is a GP, and when I first developed EM at the age of seven, he spent most of his free time contacting other doctors to see if they had any idea what this was. When I was finally diagnosed, almost two years later, my dad had never heard of it and struggled to find information on it.
There are so many rare diseases that we cannot expect doctors to know them all. There isn't a "test" for EM, so it can't be picked up on a scan or blood test. That makes it even more difficult for doctors. What we can do is help them by getting out information these rare diseases. Because my dad knew about EM, he actually diagnosed a patient who had been told it was restless leg syndrome by a Rheumatics specialist. Now every GP in my area has at least heard of EM, so patients will be spotted early.
Hi. I'm new here but not to EM. Had it for many years and I've tried Arthrotec. It didn't help and I got the common side effect problems females can have from it, bleeding, resulting in having a uterine biopsy. Not fun! My father was a doctor too, now deceased, and had no idea how to help with my EM. It took me seven years to be diagnosed and it only happened then because I printed info from TEA and gave it to my doc with photos of my feet in various stages of flare.
I also have FMS, but my EM isn't considered secondary because FMS isn't known to cause EM. They do seem to sometimes occur together, but I think the suspiscion is that the FMS is really going to end up turning out to be an autoimmune disease. Either that or there's something causing both EM and FMS as secondary conditions. One of my docs thinks that thinking is all wrong and FMS is likely autoimmune and really could cause the EM. I also get weird side effects from most drugs used to treat both conditions but drug sensitivities are common with both conditions unfortunately.
What has helped me most is Magnesium, especially for my hands. Feet are still a big problem.
Tegretol I got for EM it was amazing and worked!! Until I got Stevens Johnson syndrome, which is a life threaten allergic reaction, and it was too tht med, but Mabey would be different for others as it was really good
And above there is a test for EM, I got it and it takes a year to come back and it gets sent to Germany, it lets you know if it. Genetic if negative then you know you have just been born with it, there’s also EMG testing to see if you have nerve damag so don’t know who told you there wasn’t but there definitely is (I’m from Scotland)
I've always been under the impression that FMS was probably an autoimmune problem also but I hadn't seen a rheumatologist in 20 years & saw one last year who claimed that yes it is believed like the Lyrica commercials say that it is wrong pain messages being sent from the nerves. But then what about the chronic fatigue component? That is why I've always thought the immune system plays a role. This same doctor had no clue what the new symptoms I'd been having for the past year were. I figured it out online.
I'm going to the University of Michigan medical clinic on the 16th. It will be interesting to see if they have heard of EM without me bringing it to their attention. I saw my sleep specialist today & told him I was like 99.9 sure that I have EM and he had heard of it & seen it when he practiced medicine years ago in Ohio. He was surprised that my GP had never heard of it. He felt that I should be able to find a local specialist to treat me so that is a little encouraging but little discouraging that my insurance probably won't pay for a large enough dose of the Lyrica to help with the pain plus like you, I get weird side effects to drugs.
How much Magnesium do you take? I tried it ages ago & had bowel problems with it. Any helpful info would be appreciated.
Kentuckian said:
Hi. I'm new here but not to EM. Had it for many years and I've tried Arthrotec. It didn't help and I got the common side effect problems females can have from it, bleeding, resulting in having a uterine biopsy. Not fun! My father was a doctor too, now deceased, and had no idea how to help with my EM. It took me seven years to be diagnosed and it only happened then because I printed info from TEA and gave it to my doc with photos of my feet in various stages of flare.
I also have FMS, but my EM isn't considered secondary because FMS isn't known to cause EM. They do seem to sometimes occur together, but I think the suspiscion is that the FMS is really going to end up turning out to be an autoimmune disease. Either that or there's something causing both EM and FMS as secondary conditions. One of my docs thinks that thinking is all wrong and FMS is likely autoimmune and really could cause the EM. I also get weird side effects from most drugs used to treat both conditions but drug sensitivities are common with both conditions unfortunately.
What has helped me most is Magnesium, especially for my hands. Feet are still a big problem.
Are you saying the Stevens Johnson syndrome was caused by the Tegretol? And if so is it now a permanent syndrome you have to deal with or did it go away once you went off the Tegretol?
Lauren said:
Tegretol I got for EM it was amazing and worked!! Until I got Stevens Johnson syndrome, which is a life threaten allergic reaction, and it was too tht med, but Mabey would be different for others as it was really good
That's interesting! I tried Tegretol a few years back and it worked great, but we did have a mild summer that year and I was nervous about potential side effects and went off in late fall since I had a bad bout of Raynaud's. This Spring was very hot so I decided to go back on it, but it didn't work this time and I have lots of skin and ocular allergy problems now, pretty major as they affect my eyes badly. I wonder if Tegretol had anything to do with my developing that problem. Mostly I'm allergic to preservatives and dye, including in some meds.
Lauren said:
Tegretol I got for EM it was amazing and worked!! Until I got Stevens Johnson syndrome, which is a life threaten allergic reaction, and it was too tht med, but Mabey would be different for others as it was really good
Were you part of a research project when you got the test? The geneticist I saw said that's the only way to get it, but maybe she's wrong. I haven't been accepted for any research because they say I'd have to have a first degree relative that has EM and may parents and sibs don't have it.
Lauren said:
And above there is a test for EM, I got it and it takes a year to come back and it gets sent to Germany, it lets you know if it. Genetic if negative then you know you have just been born with it, there's also EMG testing to see if you have nerve damag so don't know who told you there wasn't but there definitely is (I'm from Scotland)
I take 600 mg per day now, divided into 3 doses, but that's based on my weight pretty much, so not right for everyone. I used to take 400 when I weighed less. I researched online and talked to my neurologist to decide on the right dose for me. Also had to figure out the right amount of calcium to take, which is important to take with it either in equal amount or double the amount. You could get a combination product so the ratio is correct.
Very high doses will cause GI problems. And also for many people, including me, any amount of Magnesium Oxide will cause that. I take Magnesium Citrate. It doesn't work for everyone, and even makes things worse for some with EM, but dramatically helps my hands. I barely get a little heat and redness across my knuckles as long as I don't mess up my dose of Mg for a couple of months, which I've done twice by mistake since 2001. And it takes my typical worst foot flare from a 9 -10 to a 7 9 in pain. Some people like the liquid form that's applied to the skin, but I found it time consuming and itchy.
I hope your doctor's appointment goes well and you're also able to find a specialist who knows EM.
lisers said:
...How much Magnesium do you take? I tried it ages ago & had bowel problems with it. Any helpful info would be appreciated.
Yes, I was hospitalised for 2week, head to toe extreme fiery blistered up rash, blisters the size of golf balls on my face, ulcers all inside my mouth, couldn’t eat or drink for a week, could barley open my mouth. Tegretol is a drug tht has extreme rash as an allergic side effect and once I stopped I’d still developed extreme rash up to a whole week after as it was still in my system. I had this June this year and to this date when I get hot the light rash marks come out on neck, hands, palm of hands and belly. They said I would make full recovery with no scars, I still have marks and when I get hot I get a very irritable jogging sensation, which is like a minor effect I had of SJS. It was horrific to go through, my stupid GP saw me and said it was a viral at first and I believed him and still took Tegretol due to it, I saved my own life by knowing something serious was wrong, as the burning, un variable itching became too much, and if I hadn’t went I could have been close to death!. I’m not sure if you have it for life, but I still get small symptoms when too hot, but they look un interested so I’m not sure. But Tegretol if your fine with it worked very good for bad EM cases like mine, hopefully you are more lucky if you try it! . But I was on Tegretol for a full month before I developed SJS.
lisers said:
Are you saying the Stevens Johnson syndrome was caused by the Tegretol? And if so is it now a permanent syndrome you have to deal with or did it go away once you went off the Tegretol?
Lauren said:
Tegretol I got for EM it was amazing and worked!! Until I got Stevens Johnson syndrome, which is a life threaten allergic reaction, and it was too tht med, but Mabey would be different for others as it was really good
No no, this was just my neurologist she is a wonderful lady and got in touch with top professors. But she done this just in a neurology department, when I next see her I will find out what the test was called Im not too sure I was just glad to be getting it! Lol.
Kentuckian said:
Were you part of a research project when you got the test? The geneticist I saw said that's the only way to get it, but maybe she's wrong. I haven't been accepted for any research because they say I'd have to have a first degree relative that has EM and may parents and sibs don't have it.
Lauren said:
And above there is a test for EM, I got it and it takes a year to come back and it gets sent to Germany, it lets you know if it. Genetic if negative then you know you have just been born with it, there's also EMG testing to see if you have nerve damag so don't know who told you there wasn't but there definitely is (I'm from Scotland)
Your neuro must be really amazing. I'm impressed. I knew the genetest website lists labs that do the tesing, none of which are in the US where I live, and I saw that Germany has one of the few labs that does the gene test. There's no need for you to ask for the name of the test for me. I just hadn't realized that any of the labs could test someone out of the country who is not a research subject. Thanks for the info.
Yes she is, I was her first case too! , yeah because I come from Scotland I’m not sure if that’s why the results took a year or not, but worth the test!
That may not be what took so long. I had the genetic tests for Fabry Disease 6 yrs ago and it took over 2 months for the lab in NY to complete my testing and even then they'd only checked 90% of the genes that cause Fabry. My doc said if they did the other 10% it would take much longer and be impossibly expensive. He said it's very labor intensive to do that type of search for a genetic mutation. That's why they usually only do it as part of a research project, so there's funding to pay for that. He was doing Fabry research, but not EM research and they weren't sure my EM wasn't caused by Fabry at the time. My Fabry test results were "inconclusive" since they only checked 90%, but the doc said the other 10% of possible mutations are so rare that I should think of it as negative/normal.
There's a simpler urine test for males with Fabry so they don't actually have to have the DNA test unless the family has never had the disease confirmed in their family. Then they do the more extensive DNA test to find the exact location of the mutation to make it easier for females in the family to be tested. But since EM is autosomal dominant and not x-linked, I'd think it would be a bit simpler and no male/female differences.
That's wonderful that you could actually find out the cause of your EM so your docs can focus on treatment for that type.
Lauren said:
...I'm not sure if that's why the results took a year or not, but worth the test!