I blogged in September 2011 about starting Thalidomide treatment. It was going really well, and I was getting my steroids down, with the hope of getting off some of my other immunosuppressants as well. Thalidomide pills are taken nightly, and they are really easy to take. They are only dispensed by hospital pharmacies, and are being used increasingly for Behcet's disease.
However I developed signs of possible peripheral neuropathy 26 days ago, and once I spoke to the consultant was ordered to stop the Thalidomide immediately. He did some nerve tests over the phone, and a few days later in person. Then a week and a half after that nerve conduction tests were done in the hospital to check for damage. None was detected in the nerve conduction tests (where you get zapped repeatedly in your hands, arms, feet and legs to check nerve condition - ouch!), but we can't be sure that there isn't any, or if it might have been a coincidence, or what. The tingling/weird fingers have eased a little bit over the last 2 and a half weeks, but Thalidomide-induced peripheral neuropathy can be irreversible, and if allowed to progress can get extremely bad. Whatever it was really alarmed me, and strongly deterred me from going back on Thalidomide, just in case.
I had a long conversation today with the consultant, and made a decision about what to do next. Assuming my blood tests are ok I'm going to start Cyclophosphamide, in pill form, with Mesna prescribed as well to protect my bladder. This had always been ruled out for me before. Initially it was for fertility concerns: when diagnosed I was just in my early 20s, and only married a few years earlier. More recently it was ruled out again because I have stratospheric existing bladder incontinence problems from the brain damage from my cerebral vasculitis, having to go to the bathroom up to every 15 minutes all day and night permanently, and needing to wear incontinence pads permanently (thankfully supplied free by the health board). But I want to give it a go. Maybe a big whack from this stronger treatment will kick my vasculitis into a better behaved place.
This will be taken in addition to my existing massive cocktail. I'm still on Azathioprine, Mycophenolate Mofetil and Methotrexate, although I would hope to get off some of them if the Cyclophosphamide is effective. And my steroids are still relatively high, though we were able to lower them a lot under the Thalidomide before I had to stop taking that.
The Cyclophosphamide will only be done for 6 months initially to see how I respond. I will need ongoing weekly blood tests, but that's not so bad - I was already needing permanent weekly FBCs. Now I'll also be getting liver and kidney function checked each week, as well as PV and CRP inflammatory markers. Incidentally my CRP has been shooting up since I had to stop the Thalidomide. Obviously that drug was doing me good. Hopefully the next one will.
I'm a bit concerned about the side effects of Cyclophosphamide, but I had truly dreadful years just from the Azathioprine in the late 1990s / early 2000s. It used to give me day-long nausea, every day, for 8 hours a day. And that went on for years. I seem very prone to gastrointestinal problems from all cytotoxics. But when I started on Mycophenolate Mofetil I insisted that I couldn't go on with this, and got permanent anti-nausea pills prescribed. So hopefully they will help protect me. My hair has thinned a lot since starting Azathioprine in 1998, and other drugs since. Not sure what will happen with that.
But the important thing is the treatment might get my cerebral vasculitis under control better. I didn't take the choice to start this lightly, but I think it's the right choice for me.