I started a thread yesterday on switching to Gilenya, I have another question about contraceptive pills, the two are kind of linked but thought I’d put this as a separate discussion. I know there have been previous threads on this but I wanted to share my recent episode and hear people’s thoughts:
So the last couple of months I was feeling very tired and had weakness return in one of my legs. This was there for a few weeks and I didn’t think it was anything major, then one day at work it got much worse, along with a really bad headache. I got admitted to hospital, while there two days later some blisters appeared on my back and it turned out to be shingles. The symptoms started to clear up quickly after being treated for this and now my leg is pretty much back as it was, I’m just still a little tired. I had an MRI and waiting for results of that to know if it was just all brought on by the shingles, although there is still the question as to how I got that.
This all coincided with a few things and I have been trying to figure out if there is a connection:
1. I started back on the contraceptive pill around the same time (I just took it a month and since stopped as panicked it might be connected)
2. I had a few traumatic/stressful things going on in my life
3. Alongside all of this I had toothache, had thought it might be neurological but turned out to be a cracked tooth with possible infection which I just had taken out
I have since seen my neurologist who is great but he does tend to be vague and never put blame on anything! We are waiting on the MRI and then I am probably starting Gilenya (was previously on Tecfidera but have generally had minor symptoms and side effects so we agreed it was worth starting something new).
My biggest concern with Gilenya is that it seems dangerous to get pregnant on it. While this isn’t something I’m planning on in the near future it is certainly something I hope to consider in the next couple of years (being early thirties now) but in the meantime I want to be careful with the drug. I would before have just not worried about this and taken the contraceptive (as I have done in the past including for 6 months while taking Tecfidera) but this recent episode of the shingles and MS symptoms starting after I went back on this has made me wary of this (although my neuro thinks it was coincidence).
Sorry for the essay on this! But would appreciate people’s thoughts, specifically on this contraceptive question (if there may be a link, people’s experience taking it alongside MS medication, if it sounds like the best thing for me is Gilenya plus the pill or any alternative suggestions?) and also general thoughts on all this and what may have caused my recent problems (I know it’s always hard to answer this but it seemed an odd coincidence for all this at once!)
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