Infusion Number 2.

I had my second infusion on Tuesday. It all went smoothly.  I didn’t get that fog descending over me this time, and I didn’t feel extra tired of flu like after either. Am very glad to have the second one out the way as it is the second one that has the highest risk of allergic reaction. I think that next time I won’t have to wait for the hour after it, they’ve said I can if I want to but I don’t have to. It was really quite a nice experience in one way, because the same MS nurse has been present throughout both infusions, and obviously we don’t sit and talk for the whole two hours, but because each time I’ve been the only one there for most the time, I can ask her questions that I remember as I sit there. Usually in a ten minute appointment, even with a list, there is invariably things that get forgotten, so having a whole two hours just chilling and sitting in a comfy chair with a coffee means that I remembered all sorts I had been meaning to ask.

One of the things we managed to ask that had been on my mind, was does the Tysabri start working instantly, or does it take a few infusions for it to be giving you the full ‘protection’. She said it should work fully from the first infusion, so that is good. 

I also asked how often you see the neurologist when on Tysabri and she said every six months, which is better than I thought because I had been told it was three monthly, and I don’t fancy seeing the neurologist after the infusion (because it involves a trek across the hospital) and just makes the whole day much longer, so it is good it is not so often.

Throughout the infusion, the did the usual observations, blood pressure and temperature. My BP was apparently quite high, they asked if it is usually that high. I couldn’t remember, but then thinking about it, I have had it bordering on ‘too high’ on the odd occasion I have had it taken over the last couple of years. The nurse suggested I get it monitored outside of the hospital in case it is a case of it just being high in the hospital when I might be more anxious. So I’ve made an appointment with the GP for Monday. I also need to discuss ‘the pill’ because I am over the ‘safe weight’ limit to be having it, but have got away with having no pill checks for the last two years. The nurse at the surgery did tell me that if I gained another 2lbs I wouldn’t be able to have it anymore, that was about 2 stones again…..so I guess I really ought to address the issue and come off it.

I suppose I ought to address here how things have been over the last month too. I’m a bit loathe to do so, because they haven’t been good at all. I have been really tired, and for the last 2weeks have had a headache constantly. It is also accompanied by that rushing / throbbing in the ears which I believe is pulsatile tinnitus. It drives me mad because when it happens I can’t lay on my front at all because the whooshing noise is just too much and the head pain becomes much worse. It is symptoms like this that make me feel there is some connection to a blockage in the veins in my neck. I mentioned this to the MS nurse and she said I ought to get it looked at by the GP, in the context of a different problem rather than linking it all to the MS. She said at the moment there is no evidence towards blockages in veins and MS but that there would be research in coming years, and that if it is something I feel is relevant at the moment, it should be investigated as a separate issue to the MS. When I mentioned it to the GP before, and asked for a referral to a vascular radiologist, she said it would have to go through the neurologist. I said that to the MS nurse and she said it should definitely be treated as a separate issue, and that the GP should just refer me for a simple Doppler scan.

Anyhow, perhaps the headache is connected to high blood pressure, so I will mention this all to the GP and see what happens.

Part of the problem with the fatigue over the last month, could have been made worse by the pregabalin. My own fault because I forgot to take it / skipped some doses in the middle of the month, this made me feel terrible. What I didn’t think about though was that even after I was back to full dose, it could still be making me more tired.
I was definitely a bit less tired in the week leading up to the infusion, and some of it was definitely connected to the infusion because it began when I had the first one, but it is possible I made it worse buggering about with the pregabalin.

I am also going to ask the GP about reducing that, although the withdrawal scares me, I don’t want to be on it forever without testing to see how I am without it. So I am going to very gradually reduce it over the coming months, whilst I am not working or studying, and see how it goes.

Sorry this post is all a bit disjointed, since the infusion (2 days ago) I have actually done a fair bit, which is definitely a good sign, but I still have the headache. Whilst I was having the infusion, the headache dispersed, and I hadn’t had any pain killers that day either, so I was hoping it was gone for good,  but it came back by the evening and is as bad as it was before now. So I am not feeling too lucid within this post, but I wanted to write it as I want to keep the monthly updates about the infusions going.

Overall, I am happy I have started the Tysabri. I am glad to have got the second infusion out of the way. I am excited about making it more than four or five months without a relapse. The big test as to if it is working will be if I make it to the end of June without a relapse because then it will have been over six months since the last one. Fingers crossed!