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!!!!
it’s been a while since I last did a post and a lot has happend its been a big few years! So the last time I posted I was feeling very frustrated with the treatment I was receiving and the disease, I had to have a break from posting to get my head around what was happening and what was the next process. The rituximab failed miserably and it incressed my CRP ESR levels so as a last ditch attempt my rheumy put me on cyclophosphamide a type of chemotherapy for 3 months in the hope that it would wipe my immune system out so I would become more receptive to treatment however this also failed and my rheumy was left with no other options, he suggested I migrate south as he could no longer help me but he has a colleague on the Sunshine Coast Qld that my be able to help so in May 2013 I migrated to the Sunshing Coast.
This is the view from my new home in Nambour on the Sunshine Coast Queensland.
Now settled in Nambour my first appointment with my new rheumy Dr Dave Nicholls was in July 2013, he said I dont have many options given all the treatments I have had so far but it was my lucky day as they had a clinical trial about to start and that I qualified for it, which in its self was luck because clinical trials are normaly only for people that respond to treatments but this particular trial wanted people who have not responded to 3 or more biological drugs which I have failed 6 treatments so into the trial I go. The trial was for JAD-W which is a jax inhibitors so it works totally different to other biologic drugs, the trial was double blinded so that means my rheumy nor my clinical manager would know what dose I got or what my inflammation levels were, you either got the placebo, 2mg or 4mg. After 12 weeks you get rescued if you were on the placebo you went to 4mg and if you were on 2mg you went to 4mg, every week for the first month had to see them and would fill in a very in depth DAS on a tablet then blood test, pee test to make sure I wasn’t pregnant then they would take blood pressure and weight all the info would be sent Singapore and then onto Switzerland. After the first month my check ups were fortnightly than monthly than 3 monthly. In June 2014 the took me off the trial as in 12 months I had not shown any improvement at all which a MRI confirmed, the only thing the drug did is increased my weight from 93 to 109kg in 12 months the only thing that changed was the trial drug. Since stoping the trial drug I have lost 4kgs hope it continues as my RA being the worse its ever been I am unableto exercise I barly can shower my self some days.
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It’s been 7 weeks this week since i started the new Rituximb infusion and with great FRUSTRATION i can say that it is not working as i have had no change in pain or how i feel if anything it’s worse my pain level has been between 7-10 and more than 6 joints are agony to touch and I’m eating pain meds like lollies, Twice a day i take 1x Tramadol 200mg Slow Release and for breakthrough pain i would take between 6-8 Tramadol 50mg and it would only just take the edge off. Had to call my Rheumy in October to let them know how I’m doing, so told them there is no change and they said there is nothing they can do until they see me December 19th.It’s all starting to get a bit much so off to my Gp yesterday to sort something out, he has taken me off all Tramadol and put me on a high dose pain patch called Norspan 7 day transdermal patch and delivers 20 mircograms per hour for 7 days and for breakthrough pain he has started me on Temgesic which has to dissolve under my tounge it gives me on 0.2mg, he said since i have been on the Tramadol since i was diagnosed 4 years a go it not going to be a pretty change over to new pain med and i may suffer withdrawals and will take a few days for the new meds to help. In the car Sam and i chatting about my Rheumy who wants to retire and told the hospital when he was going to retire at the end of next year and the hospital have done nothing to bring in another Rheumy, and because we are classed as regional we only get one Rheumy and it’s 6 months between visits so I’m thinking about going private next year to Brisbane, Melbourne or Sydney where you see regularly and they deal with your pain as well because at the moment i see gp for pain and Rheumy for RA , my gp wants me to come off one of the RA meds Methotrexate which is a chemo and a basic RA med and not sure if i want to do that without my Rheumy knowing. I ended up having a break down in the car crying and sobbing because I’m in pain ALL the time I’m exhausted when i wake up, I’m not sleeping well and I’m FRUSTRATED that my stupid body is not responding to treatment, and FRUSTRATED because i don’t see my Rheumy often and I’m FRUSTRATED because I’m not living life I’m just existing. Sam called my Rheumy and said they have to see me before December because I’m shit and have gone backwards again so i see them next Wednesday 24th. Sam said when i see them to not put my front on let them see Me and that I’m not coping, Sam said the can see that I’m in pain and my joints are swollen but i don’t show them how much it affects me, i tell them that I’m in a lot of pain and I’m shit but i don’t show my emotions or that I’m getting depressed as Sam says i have my front/wall up and they think emotionally and mentally coping, which normally i am coping but i think this treatment not working was the straw that broke the camel’s back.
At 5pm last night i put my first pain patch on and at 9pm i took the new breakthrough med with in an hour of having it i got a headache and pain was having a party in my body and it didn’t help that i took my anti depressent which helps me sleep later than i normally do so couldn’t go to sleep and I’m sure an elephant was siting on my chest i was still wide awake at 2:30am i finally went to sleep not sure what time but it was a restless sleep tossing and turning, i woke up at 9am with a nasty headache and ALL joints aching/throbbing and that bloody elephant is still sitting on my chest and i feel like i have run a marathon and gone a few rounds with Mike Tyson. Time for more pain meds i will updated on Wednesday after the Rheumy visit.
Hope your all well! Until next time take care! :-)
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Yesterday was my second infusion and i was having a very bad RA day every joint in my body was aching and chest was giving me a hard time had sharp pain and felt like an elephant was sitting on my chest. 3 hours in had to stop the infusion i was getting massive pain in my mid and upper back which i don’t normally get so they run the saline for half hour then started rituximb again, the pain stayed and still have it now they don’t think it was from rituximb they think it could be more RA related so just keeping an eye on it. To give you an idea how bad my RA was yesterday i had 700mg of tramadol which breaks down to 6x 50mg tramadol and 2x 200mg tramadol and 8x panadol and I’m not much better today. I have felt no change in my joints, pain or fatigue as yet I’m hoping it starts to kick in soon, they say it takes a few months for the rituximb to kill off your white blood cells. This was my last infusion now for 24 weeks then it starts again having a infusion then 2 weeks later having another one. I will keep you all posted on how it’s goes over the next 24 weeks. I don’t see my Rheumy now till Dec 19, but have to call in Oct to let them know how it’s going.
Hope all my readers are well!
Until next time take care :-)
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HOW MY INFUSION IS DONE IS BY AUSTRALIAN MEDICAL STANDARDS!!!!! AND AS FOR OTHER COUNTRY’S STANDARDS I CAN NOT COMMENT ON!!!!
On Tuesday 4th September i started my new biologic treatment, we got there at 08:20 and they hooked me up to the infusion machine thing, before they started the Rituximab i had to have a100mg of steroids and wait for half an hour. The steroids are given because you can have reactions while receiving the Rituximab, the steroids make your body except the Rituximab. After the half hour they started the Rituximab and it is started at the lowest rate and then at every half hour if I’m doing ok they speed it up a little until the reach the maximum rate. 2 hours in i started having a reaction my ears (inside) and throat (back) started at getting very itchy so the infusion had to stop for half an hour and just had saline running through, after half an hour the itching went and they started up the Rituximab again and had no further itching. 3 hours in from my elbows to my finger tips on both arms and my knees started going really tight and pins and needles i asked the nurse and she said it was because i am sitting for so long and the only time i move is to go to the toilet. Infusion finished at 16:30 was a very long day.
When i woke up the next day the muscle tightness and pins and needles had gone but i have a very red face which is a side effect also i am super fatigued and just felt flat. Today 6th Sept I’m still feeling very flat and have super fatigue and a red face, my fatigue normally is a full on but this is 3x as bad. Have no change in pain as yet it’s still powering on! The nurse told us on Tuesday that for the next week i am TOXIC and if i vomit, pee, or poo my self that nobody can clean it up but me because it can make them very very sick, when the nurse hung the bag up it was in black plastic because it is light sensitive and she had full protective clothes on with gloves and glasses , gives you a little idea hot toxic it is.
Will keep you up to date with how it’s going.
Untill next time take care :-)
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