My Dad was diagnosed with TN about one month ago aged 68. He started on Lyrica, which had minimal effect, and then after a couple of days he started on Tegretol, which has been very effective for his pain over the last month.
Just this evening, he has been admitted to hospital with two DVT blood clots in his leg, and several clots on both sides of his lungs. He is very healthy other than the TN, and has no risk factors for DVT including surgery, travel etc. other than his older age.
Has anyone else had any experience with DVT on Tegretol? I realise this would be an incredibly rare side effect if it was one - http://www.ehealthme.com/ds/tegretol/dvt but I can't help but notice that from this page, all of the people who reported DVT experienced it within the first month of treatment - surely if it weren't related, the pattern would be more spread out over treatment.
If anyone has any information about this I would greatly appreciate it.
Hi guys, thanks for your replies. They are putting him on blood thinners only for now, I assume they are ok with Tegretol.
The main question I have is does he need to be taken off Tegretol now? If this is the kind of thing that happens initially in treatment and then doesn’t occur again, then it should be ok to keep him on it. But if there is a risk that it will happen again, maybe he should switch drugs.
Sometimes these things are so rare that the doctors don’t see the link and only the patients themselves will know the real story so I am hopeful someone has experienced the before.
I am getting out of the hospital tomorrow - I was just treated for PE...like your father I had no other risk factor other than tegretol. I almost died due to this, still waiting for what my neuro has to say
Hi Dannyj, I’m sorry to hear that - it is very frightening. They say as long as you are treated for the PE you will very likely have a good outcome. I hope you get well soon. How long have you been on Tegretol? I did some research and found several case studies detailing blood reactions such as this - they must be rare though as all the doctors I spoke to looked at me very blankly. The articles were also in French, which means its even less likely anyone will have seen them. I think it is important for the doctors to report it to the drug company though, it’s important to know this could happen. My Dad also experienced a severe allergic reaction after he had the PE and DVTs. He was very unwell, it was awful.
I have been on Tegretol for a little over a month, which is in line with the data I have found in regards to reactions with tegretol. These instances are very rare indeed, .66% of those treated with tegretol, for whatever reason, develop PE's. We are usually male and usually within a month or so. One thing that is worth noting is that this is not the only reaction I have had with tegretol - I have had some rashes, extreme - EXTREME - fatigue, extreme confusion...and now that I am on blood thinners any change in medication is dangerous - so I have no idea which way we will go. I hope your father has noted all of this, stated something to his neuro. I hope he has better luck than I have had, because my neuro seems shocked that tegretol has been so rough on me. Feel free to friend me and we can have further discussions to see if there is any other "mirrors" of symptoms and reactions.
One final thing, are you aware that coumadin and tegretol lower the effectiveness of each other? Hope any of this information helps
My Dad had an extreme allergic reaction to Tegretol about 3 months after the PE/DVT, which was about 4 months after starting Tegretol. He was very, very ill generally, temperatures, fatigue, and an extreme full body rash, with lip swelling, the rash took a long time to clear up after stopping medication. We had to stop tegretol at this point as it was life threatening (I have another post on this incident, which I believe is also rare). Be very careful if you have already experienced rashes that it doesn’t get worse for you. I would almost be inclined to try a different medication considering the similarities between your case and my Dad’s. My Dad has since been put back on Lyrica, then on Epilim. Neither worked as well as Tegretol for him, so the next step is to have an MVD. He is apparently a good candidate for one.
We were across the interactions between warfarin and his other medications. It’s a bit of a pain, but eventually you work out a balance. He is still on warfarin now. Hopefully not for too much longer.
If you have any questions or anything let me know, I’m interested to hear about your journey too, as we are apparently rare indeed!