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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