Sever neuropathy pain in hands after transplant.

[vcarmody]

I hope someone here can give us some advise or help.  My husband had his transplant 5 weeks ago and now he is suffering for sever neuropathy pain in his hands.  It is so bad it keeps him up all night, he says he wants to cut his hands off.  His sugar has never been over 120 since the transplant.  He was taking Neurantin (sp?) 2000 mg a day with no relief.  Yesterday they changed him to Lyrica 25 mg twice a day but it has given him no relief. Does anyone have any suggestions? Anything that may help? 

[coravh]

The only thing I can think of is that maybe the prograf has exacerbated some existing neuropathy. I found it made my gastroparesis worse. Sorry I can't be more help. Best of luck.

Cora

[jeannea]

That's a lot of neurontin. I had the Prograf neuropathy in my feet but 300 mg a day helped me. I would think the next step is to visit a neurologist.

[cariad]

That is a load of Neurontin but do not despair, that drug was useless for my PHN (post-herpetic neuralgia, excruciating!) A few comments to hopefully ease your mind: I started taking Lyrica for PHN on a Wednesday afternoon and had my last attack Friday evening. It takes a while to build up in one's system. Second, he's on a pediatric dose. I would ask why. I went to a pain specialist weighing roughly 100 pounds and was told that 75 mgs was a kiddie dose. Has he been given a schedule to increase? I would ask them to at least double the Lyrica. I do not exaggerate when I tell you that I was contemplating suicide before I started Lyrica. It saved my life and I so hope it does the trick for your husband. Hugs to you both.

[vcarmody]

That is a load of Neurontin but do not despair, that drug was useless for my PHN (post-herpetic neuralgia, excruciating!) A few comments to hopefully ease your mind: I started taking Lyrica for PHN on a Wednesday afternoon and had my last attack Friday evening. It takes a while to build up in one's system. Second, he's on a pediatric dose. I would ask why. I went to a pain specialist weighing roughly 100 pounds and was told that 75 mgs was a kiddie dose. Has he been given a schedule to increase? I would ask them to at least double the Lyrica. I do not exaggerate when I tell you that I was contemplating suicide before I started Lyrica. It saved my life and I so hope it does the trick for your husband. Hugs to you both.

Thanks carid, he is going to ask her to up it on Monday (but I think he will probably call her sooner because he is suffering so bad).  He actually started to take one in the after noon so now he is taking 75 mg a day.  Can I ask if you take 75 mg a dose or a day.  My husband weights about 250 lbs so I am thinking he would need quit a bit more then your taking.

[cariad]

Oh, sorry - yes, 75 mg three times a day, actually. I have not been on it for a year, though - the pain specialist told me that once I had gone two months with no attacks I was not going to have another one. I was so terrified coming off that drug, but the most I've had on my leg is a slightly uncomfortable twinge now and then, absolutely nothing remotely like those attacks. I was also taking Tramadol, which I think was supposed to be a painkiller but I never noticed that it helped with the pain of an attack. I just kept taking it because I was afraid to stop.

I have also read that neuropathy can be helped by certain supplements - magnesium and B6 are mentioned often. Some people swear by the magnesium, others say it had no effect, but then, the same is true for Lyrica and Neurontin. You can google "neuropathy home remedies" for ideas on supplements.

If he is in that much pain I hope you have alerted his transplant team. I told my surgeon about my pain and he consulted with a 'transplant neurologist' - yes, such a creature exists. Pain like that is really an emergency in my opinion and acceptable to call doctors after hours and demand answers. If it is being caused by Prograf (and I am not diabetic but I had many problems with pain from Prograf - you can read my post entitled 'I hate Prograf' on this forum) then perhaps he could be switched to a new med in the same family. He needs relief immediately. There is really no stress like unrelenting pain. I hope you two can find the solution. Best of luck.