_Dear Mof4n,
You have found a wonderful dr. Willing to educate herself on this horror of a mutation. I had been doing really well and was so hopeful then BAM! I had the worst flare ever last night. The gel packs from the freezer made me comfortable and it was over in three hours. It is great your dr is open to trying different drugs. A new research paper has been done on Mexiletine helping neuropathy. You might Consider printing it up for her. I’m so glad you’ve been given hope. It’s EVERYTHING for pain patients. Hope you continue to improve. What a weird disease. The strange thing is my bro, niece, and nephew all have type 1 diabetes and none have neuropathy. Go figure. Patricia
Are you the only one in your family with EM? Do you have kids? I ask because my oldest who is 19 is also having flares on certain parts of her body hers in mainly tops of her feet and her knees. So I was so excited to speak with a doctor who would listen but completely forgot to tell her about my daughter and to see how common it is to pass it down. My other 3 so far God willing don’t have any signs as of now. Ya I will read up on that medication you told me about and see what she can find out about how well it works and I have only been on the baby aspirin and zyrtc since frid but so far no change I’m still flaring but maybe it needs more time just trying whatever she says at this point lol.
I am the only one in my family with anomalies in the SCN9A gene. Forgot to have kids, so don’t have to worry about that. Medical discoveries are happening in leaps and bounds. I think dna manipulation is down the road 20 years so hang in there. P
I take 450mg of lyrica for my em. It helps a lot at night for sleeping.
This might be an old post. But here’s some information for you. You cannot cut a 60mg capsule in half and use it with the capsule broken. If you do that the microcoated pills will dissolve to early in your digestive system and have no effect. The capsule must be taken apart and the little capsules should be counted and half of them put back into 5e capsule and it’s put back together. This will work with the 60mg capsules making them into 30 or less by counting the little coated pile pieces inside and figuring out how many pieces you want to remove to get the effective dosage. Cymbalta can be cut down perhaps a few milligrams a day or every three days to lower the dose this way from a 60mg capsule to go lower over a stepped approach without having to worry about withdrawals. I did this for my mom and it was a big pain to cut back on all the capsules slowly and do it right. She cpwanted to try stopping it down from 30mg pills down to zero. I found you cannot open the 30mg capsules but we had a supply of 60mg capsules she wasn’t using any more so I cut those down, as we got down to 2mg of cymbalta she deciddd to go back on it at the 30mg dose so that cut down and dropping of cymbalta was a waste of time for heel, Mom also tried lyrica and neurontin basically lyrics is the same thing as neurontin with a useless molecule added to it that falls off in your digestion system and turn some into neurontin. The advantage of lyrics is there are more dose levels so you may be able to find a dose level that is better for you with lyrica than neurontin. For my mom who has EM as a drug reaction and damage from Risperdol, she hasn’t only a pure sudden onset of em with not cold episodes at all. So she doesn’t have mixed neuropathy conditions which present hot and cold symptoms as some have but only EM in a hot flare form. For her methods like tramadol and aspirin therapy were not enough as she progressed into worse and worse versions off the disease. Her progression was very fast with level ten pain flares within a very short fineness of twking Risperdol. Mom’s feet will react to Risperdol and amitriptyline. I believe that the two drugs interaction with serotonin causes her damage. But my theory of how the drugs cause it in her has nevertheless been verified by a doctor so that just my lay theory.
In my mom she case cymbalta 60mg per night helps her sleep and deal s it has pain. But in the past she took a lot no more it’s per day and the higher doses put her in a manic like request and demand state of up to 20 requests per minute. Which was not good. So we had to use a low dose for her.
**Hi Watchperson,
I wish I had a child as compassionate as you. My neurologist had me cutting Lyrica to titrate up without having to get new scripts. I find it interesting that here, no matter how many mgs the capsule, the cost is the same. And this is one REALLY expensive script. I tried Gabapentin for about 18 months. I was still on fire nightly and during the day I walked into walls. Started on the Lyrica at 150 mg twice a day for about 2 years. That…plus150mg Mexilitine 2x a day. I started reading on quite a few site about taking Cymbalta with the Lyrica and science found it amiliorated neuropathic pain. Discussed it with my dr and started taking it in the a.m. about 6 mos ago. I believe it bought my pain level Dow from an 8 down to a 6. This isn’t every day. A week ago I started taking 60 mg of Cymbalta in the morning and started taking the Lyrica 3x a day as my dr had prescribed. I hate, loath, And detest taking the Lyrica because I have the famous “fog brain’. I had to do some soul searching re pain or brain. I can’t take the pain anymore so I’ll do anything to reduce the fire. So… I’m doing really well on that mixture. I hope your mom is doing well. Patricia aka satochan
Ps I have a freezer drawer FULL of gel packs. Finally found a brand that lasts 8 hrs. Heaven. Let me know if you want to know more.
Pops; you are correct. If a capsule is time release it can’t be cut. I didn’t dream this up myself. My 80 yr old neurologist told me to.
Hello to all, I have recently found a rheumatologist familiar with EM and have been diagnosed with psoriatic arthritis with secondary EM. He replaced gabapentin with Lyrica 75 mg 2 x a day and Lexapro with Elavil 50 mg 1-2 at night. After 3 weeks I am flaring as bad as the day I walked into his office. He also prescribed Otezla for the psoriatic arthritis but at a cost of approx. $4,000/month, I’m waiting for insurance to decide if they will cover it… Also take tramadol 3-4 x a day as needed with not much help. I basically sit or sleep with a fan blowing directly on the bottom of my feet 24/7. I am going to ask about the Lyrica and cymbalta combination tomorrow.
YES, would llove to know the brand of gel packs that last 8 hrs. I may get 30 min from mine.
**Hi WKY, I know exactly how frustrated you are. I just went on Amazon and looked up my favorite gel packs. CryoMAX Cold Pack, Reusable 8 Hour Cold Therapy Ice Pack. They come in three sizes. 6x6, 6x12? And 12x12. Small, Med ,large. My EM is mainly in my palms, though it’s started traveling up my arms and going down my legs into my ankles. I have tried every kind of gel pack you can imagine and they would last 30 minutes to an 1 hr. When I found this, I just couldn’t believe it. I use the 12x12 wrapped in a soft dish towel folded in half. Amazing. Sometimes I don’t have to take an opioid due to how soothing it is. I had to go to my neice’s Wedding last summer. I absolutely HAD to go, no matter how bad the pain would be. I bought 2 of the small ones and took them in my purse. I hope this helps you as much as me. If you ever want to know my medication routine just ask. I never thought I’d be one of those people Dr. Oz would talk about taking multiple scripts. I have side effects but would rather live with them than the pain. You’re never alone here. Patricia **PS: they actually are cold longer than 8 hours.
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Hi Satochan, Thanks so much for the CryoMax cold pack tip. You are right. I am getting 8+ hours and recommend these for help with flares. I"m still working with my doctor to find a combination of meds that help, still 24/7 in front of fan or using this CryoMAX Cold pack. Yes, I am interested in your medication routine. So far I’m no better than I was 3 yrs ago. Thank you again for the Info. WKY
Hi Wky
It’s a while since I posted, been away & distracted. Although that can be a good thing with pain!
My effective pregabalin (Lyrica) dose is 300mg at night. It’s reported in prescribing research that doctors under dose & it gets abandoned as ineffective. It’s important to increase very slowly to allow adjustment particularly to possible sedation. I have mostly no brain fog. Of course use the minimum effective dose, I’m just suggesting don’t give up until the dose has been pushed up to 300mg or even 450mg total per day. Providing you can tolerate it.
Best to you
Stan
I only put a general post to anyone concerned. I take Lyrica and Amitriptyline together, apparently it is better taken together, that is according to my internist. I suggested the Cymbalta and he said it is practically the same as the amitriptyline, just much more expensive. I pay for all my meds myself, no medical benefit, so the cost matter to me as everything is so expensive. I take 75 mg of Lyrica twice a day with a 10 mg Amitriptyline added in the evening. It took me a long time to ajust to the Lyrica in the mornings as well. As far as my dr is concerned, he said that the Lyrica is suppose to cover you the whole day, a dose in between is no use. My flares was nearly non existent during the winter but is playing havoc since summer started! I really hope you get relieve from something.
Hi. I hope you are doing ok it is long time since I have heard from you
My EM is getting worse as this disorder can I am getting Pfizer vac
Tomorrow a little apprehensive hope it does not affect it
Have you had it yet
Please take care hope to hear from you