Medications

Would anyone be willing to share what meds you take,what has worked. I was having success with lyrica 25mg 4x per day but by doc told my to increase. I did and what a mistake. So much more burning. I tried to back down but was worse. I'm stuck. Now on fentanyl patch but have to keep going up on that. Don't know what to do.

Thank you Veerla

I am on a fentanyl patch which is an opiate and have had to go up on it. My doc does not know what to do. What do you currently take? I just need to find a doc willing to work with me and not just cover it up with pain patch. Have you tried nerve block injections? right now the burning is worse in my scalp,face,neck,back,hands. so horrible. Thank you for your reply

Danni M

Veerla said:

Hello,

Sorry for the delay in my reply. Just read your message. Long story short: I have been trying many many different forms of medication during the past 6 years. It is a process of trial and error. For me the Lyrica works (a bit), but many other ant-epileptic medication did not. So maybe you can ask for other medications in that spectrum (anti-epileptics)? I also tried gabapentine which only made me high as kite, but they seem to help my sister a lot. So as you might imagine it is not a fixed pattern of medications you can follow but you have to keep trying. After 3 years I had to use morphine, first merely pills and now patches. Because of the tolerance it has to be increase and of course because of the increasing pain and decrease in small nerve fibres. But please note: it took me many many other drugs, and years, to try all sorts of medications before my doctor prescribed opiates (had also to do with how much my pain increased). The medications I took which I know by hearth are:

- Lyrica

- Mexeteline

- Gabapentine

- Cymbalta

- Tramadol

- Diphantoïne

- Oxycodon

- Oxycotin

- Buprenorphine

Some of the drugs above are opiates which I absolutely don’t recommend taking. Only after consulting a doctor of course and try to delay the use of opiates as much as possible. There are side-effects and ones you have to take them you will notice a physical dependence. Btw, some of the medication names above might be spelled differently in English. I did my best but it is possible that some names are still the Dutch names and not in English. I wish you the best and hopefully you will find something that will help.

Best,

veerla

We have many older interesting and informative posts on medications . I attach several examples:)

http://www.livingwitherythromelalgia.org/forum/topics/is-there-a-place-on-the-site-where-people-post-what-medication-or

http://www.livingwitherythromelalgia.org/forum/topics/sodium-channel-blockers

http://www.livingwitherythromelalgia.org/forum/topics/has-ilprost-worked

http://www.livingwitherythromelalgia.org/forum/topics/has-anybody-tried-venlafaxine

http://www.livingwitherythromelalgia.org/forum/topics/what-medications-currently-work-for-people

I am using doxepin and gabapentin. We worked with the combination/dosages for almost two years before I finally seem to have a good system which alleviates the worst of the pain (scalp and feet) and feeling of constriction (scalp). I now take 50 mg doxepin once per day, and 600 mg of the gabapentin 3x per day. The gabapentin used to make me incredibly drowsy (30 minutes after taking it the sleepiness would hit me like running into a wall!). But over time my body has adjusted to it and I don't feel sleepy at all after taking it. So keep working with your doctors, and have faith that eventually you'll find the right combination to ease most of the pain.

Thank you so much for your information and encouragement. I certainly need it. So gabapentin made the burning worse when started at 300 mg. We did drop down to 100 mg but I felt the longer I was on it the worse I became. That was quite a while ago so it might be worth revisiting again.

Wearsahat said:

I am using doxepin and gabapentin. We worked with the combination/dosages for almost two years before I finally seem to have a good system which alleviates the worst of the pain (scalp and feet) and feeling of constriction (scalp). I now take 50 mg doxepin once per day, and 600 mg of the gabapentin 3x per day. The gabapentin used to make me incredibly drowsy (30 minutes after taking it the sleepiness would hit me like running into a wall!). But over time my body has adjusted to it and I don't feel sleepy at all after taking it. So keep working with your doctors, and have faith that eventually you'll find the right combination to ease most of the pain.

I too have tried many different combos of meds. with many side affects and little results. This year I tried a supplement plan. Taking vitamins daily instead of heavy drugs with lots of side affects. I take vitamin D, Magnesium, Lysine and use Lidocaine pain patches when needed. What a difference!! I had a great summer filled with lots of activities I could not normally do. I still have days of pain and need to use my patches but this helped me SO much. Hope it helps you!

I have tried a few without success such as.....

Cymbalta

Lyrica

Oxycodone

Morphine

Demoral

Antihistamines

I'm sure there were more but can't remember.

I tried Gabapenton a few years ago but I was still trying to work and couldn't get to a high enough dose because it made me sleepy and high as a kite. Now that I am no longer able to work I have started it again because if I am sleepy which I always am now I just sleep. they say after I get to a stable dose for a while this should go away.

I have had lidocaine infusions with mexiletine pills and this has helped to a degree and I also continue to take Morphine er . Demoral, and gabapentin as well. This combination is the best I have found yet but still not close to manageable . I would call it more like taking the edge off.

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

Danni,

I think I shared this medication combo on the discussion boards already, but recently, due to a run around with the insurance company and pharmacy, I was without Carbamazapine for two weeks (Brand name is Tegretol, I take 100 mgs twice a day). (It's an anti-seizure med.)By the end of the first week my feet were starting to burn again. By the end of the second week I was needing my cooling socks again. I was continuing to take the Cymbalta (lowest dose every other day) so the only difference was the combination of Cymbalta and Carbamazapine. It took 5 days of restarting the Carbamazapine for it to kick in. This experience made me want to share the info with other EM sufferers. For some reason this combo works great for me. My symptoms don't seem as severe as most of the people on this forum so don't know if this info will help anyone. Just thought I'd put it out there.

Bluesnrocrul

Tizzy thank you so much for taking time to reply. It helps so much to at least know what my options are. Yes I need to find a good pain specialist. Having trouble with that. Thanks again. Danni M

Tizzy said:

Hi -Danni M , do keep in mind that there is no cure for Em at present so the best treatment is to cover up the pain. That being said you may need a combination of medications to achieve this-generally antiepilepic, antidepressant and possibly opiate. All of these have in common the fact that they dull the nerve impulsesand therefore pain.Some general practicioners get concerned about combinig meds ,but this is where a pain specialist comes in. Trial each drug ,weigh side effects against improvement and go up in dose-repeat-add next drug if required. I take 150mg Lyrica , 300mg Effexor ,10mg x2 Targin ,5mg endone plus stuff for sleep -so yes a heap!I am under supervision of a pain doctor and like Veerla did not undertake opiates lightly. maybe you could ask about adding cymbalta and tramadol as they are less likely to cause dependance. Sadly, blocking pain is the treatment of Em,so take the time to trial a drug,at least a month unless worse or dangerous side effect,as it takes awhile to get to a decent dose. I tried all sorts of ciculatory meds to no avail ,nerve meds were best -once you control pain better life does improve. It is so frustrating and takes ages.For me relief is partial and I need to use environmental controls as well. Good luck and hope you find a good combo Tizzy


Bluesnrocrul thanks so much for taking time to reply. It helps to know what works for others and what meds are out there for this. Thanks Danni


bluesnrocrul said:

Danni,

I think I shared this medication combo on the discussion boards already, but recently, due to a run around with the insurance company and pharmacy, I was without Carbamazapine for two weeks (Brand name is Tegretol, I take 100 mgs twice a day). (It's an anti-seizure med.)By the end of the first week my feet were starting to burn again. By the end of the second week I was needing my cooling socks again. I was continuing to take the Cymbalta (lowest dose every other day) so the only difference was the combination of Cymbalta and Carbamazapine. It took 5 days of restarting the Carbamazapine for it to kick in. This experience made me want to share the info with other EM sufferers. For some reason this combo works great for me. My symptoms don't seem as severe as most of the people on this forum so don't know if this info will help anyone. Just thought I'd put it out there.

Bluesnrocrul

Alina - thank you for replying. I know it will help me to have some meds to tell MD about.I need a good pain specialist but still looking. Thanks again. Danni

Alina Delp said:

I have tried a few without success such as.....

Cymbalta

Lyrica

Oxycodone

Morphine

Demoral

Antihistamines

I'm sure there were more but can't remember.

I tried Gabapenton a few years ago but I was still trying to work and couldn't get to a high enough dose because it made me sleepy and high as a kite. Now that I am no longer able to work I have started it again because if I am sleepy which I always am now I just sleep. they say after I get to a stable dose for a while this should go away.

I have had lidocaine infusions with mexiletine pills and this has helped to a degree and I also continue to take Morphine er . Demoral, and gabapentin as well. This combination is the best I have found yet but still not close to manageable . I would call it more like taking the edge off.

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

Danni M. I have recently been prescribed mannitol 30% in lipoderm cream which I put on my feet when they are burning and it is very effective. I live in Canada so do not know if this is available in other countries.It is a compounded prescription.

Judy S

Thank you Judy. I appreciate the information. I just have lidoderm hydrochloride 2%. I'll ask my doctor about this. Danni.

Judy said:

Danni M. I have recently been prescribed mannitol 30% in lipoderm cream which I put on my feet when they are burning and it is very effective. I live in Canada so do not know if this is available in other countries.It is a compounded prescription.

Judy S

Sorry,I messed up a post I think. Either lost it or just cant find it. My apologies. My fingers are too sore to type anyway, today. :) oh dear, I think I might have been actually replying to another post. Lol. Sorry. Just want to suggest periactin - cyproheptadine. It helped me quite a bit with migraine and EM and I recently saw it suggested for treatment of EM. but I am one of those people that have never gotten full relief - but I have gotten decent relief for many periods of time. This year and last year have been more difficult - but I did experience almost 10 days all but free of it when I was on holidays in early september. It was not lack of stress - it was holidaying in this brilliant house overlooking the beach which has been built to catch the cool breezes coming off the water but blocking out the sun.

blue

Blue thank you so much for the recommendations. Will ask MD about it. Hope you have more of those 10 days free of pain. God bless

Danni

blue said:

Sorry,I messed up a post I think. Either lost it or just cant find it. My apologies. My fingers are too sore to type anyway, today. :) oh dear, I think I might have been actually replying to another post. Lol. Sorry. Just want to suggest periactin - cyproheptadine. It helped me quite a bit with migraine and EM and I recently saw it suggested for treatment of EM. but I am one of those people that have never gotten full relief - but I have gotten decent relief for many periods of time. This year and last year have been more difficult - but I did experience almost 10 days all but free of it when I was on holidays in early september. It was not lack of stress - it was holidaying in this brilliant house overlooking the beach which has been built to catch the cool breezes coming off the water but blocking out the sun.

blue