So Friday will mark the beginning of my third session of Rituximab. My thoughts on the drug are quite positive so far, although I still can’t decide if it’s the high dose of steroids I’m still on that are making the difference. It will be interesting to see, as all being well I will be able to reduce the steroids again after this treatment.
As I’ve mentioned before, pain has come back barging its way into my life recently. Don’t get me wrong, it’s not quite as bad as when I have been at my worst. But it’s still there. Niggling away at my knees and wrists and hands and ankles and shoulders and hips at three am. The nights are becoming a drag to be honest. I’m exhausted but can’t sleep well because of the pain, so I get up at the crack of dawn to keep moving my joints but by mid morning feel so tired I cannot see!
As frustrating as it is, I made the decision to start a business that suited my level of work and is something I enjoy and I am determined to make it a success. So pain will just have to keep niggling away as I’m too busy to give in to it right now. I just wish my body would give me a break and let me get on with my life and make a go of things. I am trying so hard to do something, be someone that I am proud of but this sodding disease just wants to hold me back when anything important comes along. Ever have that feeling when you’re lying awake in the middle of the night where you just want to scream at the top of your voice? I seem to be having that feeling every night at the moment.
It’s annoying me and its annoying my loved ones. I have to get up when I wake as the stiffness makes things worse so I creep around in the dark trying not to wake anyone. I deprive my boyfriend of lie-ins at the weekend with my six am burst of energy then want to sleep again by eleven am. God I annoy myself even thinking about it.
Anyway, maybe my body knows it’s coming to the end of the treatment cycle and is craving more. You see, the problem is I can’t find much information about repeat treatment of Rituximab and the third cycle specifically because it’s so new. Not a single person I know of is this far along in Rituximab treatment, even my doctor admitted I am the furthest patient along that she knows of in the whole of the midlands. So I guess I am playing guinea pig from now on. Wait and see is such an appropriate term for RA don’t you think?
Here’s hoping that round three will have an even bigger improvement on my miserable state at present and allow me to do the one thing I want most in the world... finish what I started all those years ago at uni where I vowed to make something of myself.
I totally understand your 'middle of the night' dilemma - I have it too. I'm on Infliximab but it has only worked for 6 months and the pain is on its way back. I frequently find myself sick of the sound of my complaining - I really feel for my hubby because he gets all of my complaining everyday. He also knows when I'm struggling but not complaining! Fingers crossed for the Rituximab xxx
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ReplyDeleteI love the design of your blog and think the title "There's always Rheum for Improvement" is quite clever! :) I've been living with JRA for seven years (since I was 12) and since I turned 19, I've been blogging about my experiences too. I've never heard of Rituximab, but my 6 weekly infusions are called "Infliximab!" so they sound similar and I'm assuming yours is a biologic drug too? I'm currently not on a high dosage of prednisolone/steroids/coretzone since I have a lot of damage, degeneration and general thinning of the bones that's occured from my Arthritis (in my fingers but a lot happened in my hips - had two hip replacements within the last two years). God, that's worst...when pain keeps you up at night. Do you find you have your own pharmaceutical drugstore with the variety of painkillers you have? haha. :) Do painkillers (e.g. voltaren, panadeine, etc) help you at all? Sounds like quite a vicious cycle that's happening to you atm! I agree, I wish that my Arthritis wouldn't interfere with my life so much as well...although since getting my hips done, things are a lot more better than they use to be (i.e. before I was completely bed-ridden almost 24/7 and was in constant, unbearable agony!). I still have my flare-ups and niggling pain, but I guess I do okay for me. Your boyfriend must be very understanding with your Arthritis. For a long time I thought that I would never find anyone, because this condition hindered my life so much! I really hope that Rituximab works out for you and gives you some much needed relief real soon!
Regards,
Lauretta :)
Yes, the ups and downs of RA, I too get up early and by 10-11am am so fatigued I'm cross eyed. My meds seem to have pain & swelling better (Enbrel & MTX), but the fatigue is causing issues @ work & eating my spirit. Then shame on me later when I plan to do something, heh. Anyway you are in my RA bookmarks, and will check in occasionally. Thanks for helping to spread the awareness of Rheumatoid Disease.
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