Last Friday I seen my Rheumy and unfortunately the Cimiza has been a flop although my bloods showed slight improvement it’s not showing in my body so my rheumy believes it’s masking my bloods which has also happend with one other drug i was taking Actemra. So what’s next you ask? Well nothing for now becaues I am having surgery on the 5th March so no biologic’s for 2 week’s before and no MTX (methotrexate) for 1 week before op and won’t start them again until all healed. The op im having is to fix the sliding hiatus hernia and reflux because it’s gotten so bad that im choking in my sleep and they think some of the reflux is going into my lungs everytime it happens so the op can’t come soon enough its getting scary waking up choking and can’t breath, Im also having a gastric sleve because when I was on the trial drug one of the side effects for me was that i put on 17kg in 12 months and now that my body is deteriorating as is my mobility and my ability to exercise so both my Gp and Rheumy have agreed that this will benefit me now and in the future, they also believe I need to Improve my quality of life and look at getting a custom wheelchair that will cater to my needs for now and into the future.
So the plan now is to lay low until my op and save up for a wheelchair and once healed I will begin another treatment which has been on the market for a long time it called Remicade, it’s given as an Intravenous infusion which takes a whole day so I will have the first one around the middle to end of March depending on how i pull up from surgery and I’m clear of infection, then the next one will be 2 weeks later, then again at 6 weeks and theni will have them every 8 weeks. Surely we will find one that works soon? There are not many left to try and the more I think about it the more I think that maybe this is as good as im going to be for now and you know what I can live with that, life is passing me by and before I know it I’ll be to old to enjoy it so im very much looking forward to getting a wheelchair so I can get out and do things and be able to stay out longer instead of being in to much pain after 3o minutes and need to go home, now all I have to do is save save save. Will keep you updated on how the operation goes.
Posted by Presh :)
So far I have had 3 lots of 400mg injections of Cimiza, and by now one would think you would start to see some small improvments whether it be swelling, pain or fatigue but I have had no improvements at all and I now start a maintenance dose of 200mg fortnightly so I guess it’s another waiting game. It has been a very long year and I am physically and mentally exhausted, it’s hard work pushing your self to do the simple taskes like geting out of bed, walking, showering, drying yourself, washing up, feeding animals that healthy people take for granted. Im hoping 2015 brings a treatment that works even if it only provides small improvements it’s still a improvement and a win.
Would like to thank you all for reading and following my blog the more awareness for this horrible disease the better, I hope you all had a Merry Christmas and hope that 2015 is a great year for you all so here’s to 2015 may it be an awesome year!
Happy New Year
Posted by Presh :)
Two weeks ago I got my bloods taken so they could send it away with my application for the new treatment Cimiza which I should get the script for this week, I also went and seen a dietitian because I am struggling to get the weight off which was put on by the trial drug and I am also struggling with severe reflux/sliding hiatus hernia and I am limited to what I can eat and when, so my Gp suggested to have surgery to fix the hiatus hernia for those that dont know what a sliding hiatus hernia is- it is when my stomach comes up into my chest cavity and causes pain and also severe reflux, for example last night I woke up choking in my sleep with my thoat burning from the stomach contents coming up and this happens most nights and during the day and also if I bend over to pick something up stomach contents come up into my mouth. I went and seen the surgeon about the reflux surgery and he also suggested gastric sleeve surgery, he thinks im a good candidate due to how severe my rheumatoid arthrits is and the fact that I am unable to exercise and he thinks it will help long term to keep myself at a low weight to help with my joints hence the dietitian visit, she also thinks its a good idea for the long term so I see my surgeon again on the 18th of this month to let him know im going to go ahead but because of money issues I am postponing it till Feb/March next year.
This week I have found it super hard to do normal everyday taskes like get out of bed, shower/dry off, wash up, vacuum and cook which is quite confronting for someone who used to be so independent and active and now I have to rely on S to help me do the above, I physically have to push myself to get out of bed and into the shower every morning becaue it is not an option to stay in bed all day.To sort of understand how hard it is picture the last time you had a really bad cold/flu and all you wanted to do is stay in bed but you had to go to work or had to get kids ready for school.. well times that by a 100 and add in joint pain to the following joints.. toes, feet, ankels, knees, hips, shoulders, neck, jaw, elbows, wrists, hands and lucky last fingers and thumbs, dont take your every day mundane tasks for granted you never know when you might not be able to do them. Here is a photo of me making a muesli slice and spaghetti bolognese but not how you would normaly cook I had to sit on the office chair because my feet didn’t want to play the game today. Heres a photo of my feet as well.. when you see them you will understand why I had to sit.
So its nearly time for my annual meltdown but this year I’m trying to not lose my shit! Its like a snow ball starts very small and different things add to it along the way and it gets bigger and bigger till finally it explodes, my snow ball is made up of failed ra drugs, 10/10 pain on a daily basis, feeling useless, unable to work, money worries, stuck at home because I’m unable to drive and because I dont have energy to go out, loss of independents, lack of sleep, watching life pass me by, unable to do normal every day tasks and It all gets a bit much sometimes. So Thursday last week I decided to join the Mooloolaba Bowls Club to see if could play bowls and it turns out that will a few aids I am able too, I dont have to bend down to bowl thanks to the bowling arm and I can have my crutches on the green thanks to a modified bottom of the crutches and if im having a really bad day I can use the special wheelchair for the green, they are very accommodating and all the ladies were fussing over us and so helpful and have started saving to buy the bowling arm which is $200 and also saving for a set of my own bowls which are around $400 -$500 but you have them for life, I absolutely loved it and had a great morning but I did not pull up very good on friday I had to stay in bed most of the day and same with Saturday so I think I might have to play and train fortnightly to give my body time to recover. When I was on the green I was the most relaxed I have ever been in my life and I think it my snow ball may get smaller as time goes on and I definitely think this is the sport for me and it also gives me something to look forward to as well as something to challenge me and I will blog my progress.
Tuesday 7th Oct I seen the biologics nurse and the results of my latest bloods was not good and explains why I am getting worse, my ESR went from 38 to 53 she didn’t give me the CRP numbers but said my inflammation markers were dismal. So it is very clear that Orencia is not working but as for what’s next we are unsure, my rheumy is still away at a rheumatology convention in America and will be back in 2 weeks so I will know a bit more of whats next. So this makes drug number 11 and counting, surely we gotta find one soon? In the mean time my body is falling apart and its geting harder and harder to push myself to get out of bed every day and also getting around is proving difficult and I need to stop being so stubborn and start using my wheelchair when we go out…. like yesterday for example we went to Queen street mall and walked one end to the other plus had to walk from train station as we got off at wrong station I took 21308 steps which is 13.64kmi should of taken my wheelchair but its tires are crap so left it at home which I shouldn’t of. You maybe thinking it’s not a big deal and for a healthy person its not a big deal walking from one end to the other, but when you have RA its a massive deal and takes a big toll on your body and today I am paying a hefty price I can barely walk, I am unable to use my right arm because my shoulder worked over time yesterday using cruchers to take some pressure off my feet and lets not forget the fatigue. We had a nice day but from now on I will be using my wheelchair whenever I have to leave the house. Lesson learned! Will update when I know more.
So after the failure of the trial drug JAD-W/JAD-Y my rheumy has put me on Orencia subconscious (stomach) injections I do myself weekly, I started on the 18th July and have had 9 injections I hate to rain on my own parade but so far I have had no improvement. I can’t remember if I have previously mentioned my gut issues? Well over the last few years they have gotten worse and im sure my large box of pills don’t help at all anyway I had a endoscopy back in 2012 and it didn’t show a lot, my gp decided to get another one done Oct last year and it showed a sliding hiatus hernia…which is when the stomach comes up in to your chest cavity its is very unpleasant to say in the lest! When I bend over food comes back up into my mouth and it also happens when im asleep and I wake up choking and the reflux is a killer too. On Tuesday I seen my surgeon about fixing it and he is happy to go ahead, I will be going under the knife in Nov but i will see him in Oct to work out whento stop my RA meds because as you know I am immuneosuppressed so i have a high risk of infection, people with RA are like new borns and the elderly we get sick easy and end up in hospital. The simple cold or flu knocks healthy people for a 6 its 100 times worse for us!
Well thats it all caught up will post again soon.
Over and out….
On the 13th October 2013 we did the color run on the Sunshine Coast and we raised $1000 for Arthritis Queensland, we had an awesome time and we finished the 5k’s but I definitely paid for it i could barely move my arms and shoulders for a week because the course wasn’t just on the road it also went through the schools oval, everytime I got stuck on the grass or sand lovely people would come to our aid and lift me out we didnt have to ask they would all pitch in and help it definitely lives up to its name as the happiest 5k on the planet!!!!