Thursday, 10 June 2010

Bad news

Ugh well I spoke to my doctor this morning, the blood tests they did the other day have come back showing a change in my white blood count. She said not to worry but to stop taking the sulfasalazine for 2 weeks and then we'll repeat the blood test.

She said sometimes people's bloods are just weird and it might not be the drug but they have to be sure.

I'm quite gutted, I thought it was going so well. No external side effects that I could see, but I guess my insides are telling a different story.

I'm still feeling pretty well, although I'm very anxious today - I feel like I'm back to square one.

I really really really really don't want to have to take methotrexate. I know it's silly and part of my denial but the thought of such a serious drug just reminds me of how serious this disease can get. Too scary :(. Also I know it's silly and trivial but I love going out and having a drink, I don't want to feel even more different from my friends than I do already. I guess we'll cross that bridge once the second blood test comes back. UGH. I hate this game.


  1. Breathe... it may not be sulfazalazine doing it. It's really hard to not freak out, but I'm working hard on learning not to worry until there's something to worry about. Easier said than done, of course.

    There are other options than meth, e.g., Plaquenil - have you tried that? That said, I was on meth for 2 years and was scared witless before I started, then realized it wasn't that bad (not bad at all, actually and my primary side effects were some stomach upset, which was relatively easily managed). The dose is so small compared to what gets used for cancer treatment that it's fairly easy to persuade yourself that it's not Serious and once my RA simmered down, I was just happy to feel better. Added benefit: helps educate the idiots who claim to know how you feel because they get a twinge in their little finger. When you tell them you have to take a chemo drug for RA, they shut up. ;)

  2. Hey, I'm really sorry that you're going through this right now :( I know exactly where you are coming from with the mtx. I was pretty young when I was diagnosed, in university, and liked to have a few drinks. If that is something you have to take, you will be fine.

    But, know that there are other options than mtx. I'm currently on Humira alone and am dealing quite well. Thinking of you! I do echo what the above poster said about people taking RA much more serious when they find out you are on chemo!

  3. Hey Squirrel,

    I really hope it's just some funny blip and you can continue on the sulfazalazine.

    I can't take sulfazalazine, so I'm on methotrexate. I was freaked out before starting it, but I felt horrible and could barely move and now, with that and Enbrel, I feel so much better.

    On the other hand, I don't drink very much at all (read: hardly ever), so that aspect hasn't bothered me, I must admit.

    Hope things work out for you whatever happens!

    :) L

    P.S. Oh Lene, you make me laugh!

  4. Wow thank you so much for the comments guys, I really appreciate it.

    Lene, you hit the nail on the head - I am SUCH a worrier. I was reading your blog a few days ago and I'm going to order that Mindfulness CD you mention, my brain processes need some sorting out! And yeah, my consulant mentioned plaquenil, if I cant continue sulfa we'll have to weigh up the pros and cons of that or mtx.

    Pony, I'm 2 years out of university and with working full time drink a lot less than I used to, but lets face it - I'm Scottish, you can't take my beer away!!! What will I do with my spare time?:P Really glad to hear Humira's working well for you though, hope your wrist is feeling better too?

    Laurie, thanks for the support, I know that nothing scares me more than the disease itself so I will do whatever I need to.. but I'm glad you were scared of mtx too! How are things going on the job front? I hope things are coming together for you!

  5. I can honestly say there are parts of Scotland I have little memory of due to the amount of beer I drank (pub crawl much?) ;) And, my wrist is feeling much better, thanks! All I know is that you are going to make the best decision for you, when you weigh everything out!

    Cripes, I don't know why I thought you were still in university!

  6. Haha well then sounds like you really did have a good time over here! Glad the wrist is doing better now, it's such a bad place to hurt, you can't do anything!

    I wish I was at uni still, but no, I work as a photographer/videographer. It's not as exciting as it sounds but I enjoy it .. most of the time. :)

  7. Thanks for the supportive words on my blog. Reading this I realize you completely "get it". I hope you do not have to take MTX either. Though it seemed to be working for me I could get past the idea I was on such a toxic drug. Scared me silly each time I swallowed those little yellow pills.