Cimzia- it goes wrong

Hello all fellow wonkies and those bonkers enough to carry on following possibly the madest woman with RA's blog!

It has been a while since the last blog entry because the cimzia has decided to eat bits of the neuro system. It has also nobbled the RA pretty successfully. I have had enough blood tests to keep the Hampshire vampires in stocks for several months I'm sure....!

Therefore, Wonky Warrior has chosen some top musical themes having spectacularly flunked (and with some style) all known rheummy medicational options! (I have to come top of the class for something in life eh, involving most departments in the hospital- no mean feat!)

5) "Mamma mia here we go again" by Abba
4) "Led like a lamb to the slaughter." Graham Kendrick
3) "I will survive" by Gloria Gaynor
2) "I get knocked down but I get up again." Chumbawumba
1) RING OF FIRE Jonny Cash

Oh YES! It burns burns burns- ring of fire today.. stupid neuropain!

Anyway- major excitement on Friday afternoon, having had a great time zooming about in the power chair chasing a jubilant 2 yr old and her 15 yr old brother up the park with my PA and on the way back, ice lollies in hand, suddenly the muscles decide to pack up and mouth drops to one side.

I decide that the GPs might be a worth while call. The GP has a fit when he sees the state of the neuro problems and then ships me off to hospital as he wants me seen.

Now, I have no idea if you have been to the local A and E but bright shiney young drs who have no idea tend to lurk in this department. Unless you have broken your leg, had a heart attack or been scraped off the road after a motorbike accident you are pretty much sunk!

Memorable lines include;

"I see from your notes that you have RA- your hands dont look too bad- are you sure you have this?"
MY ANSWER- "How many 30 somethings have you seen with hands like mine then" (under breath MORON!)

"Oh right, Arthritis, what joint does that effect then?"

Following rituximab whilest in high dependency...

"Are you SURE you are having this for rheumatoid ARTHRITIS? Do you see someone called an ONCOLOGIST?!"

"You are young to have that arent you?" ANSWER "Yes, I will write and complain"

I am ever hopeful that one day I will see Dr House coming out from a side room and will say "ah, come in for some indepth investigations" following a week in a private room with fresh flowers and smart en suite loo while he researches my case with his learned colleagues, "this is a case of bumpuslumpusouchouch disease and not Rheumatoid at all, take this tablet and you will be fine" but he hasnt turned up for work in the NHS yet!


Anyway, in the absence of House MD, the registrar was on the ward and did a great job of a neuro exam and explained that in no uncertain terms it is the Cimzia causing the issues.

Obviously the siren has sounded and all the local nutties have come in for admission at the same time. Mrs Potato is in the bed next to me who is trying to escape with all her might because she hasnt even bough any potatoes for tea...Wailing "I want to die" and me thinking "If you dont stop helping me and mr pillow will help you on your way...!"
I wonder if it was "just" the burning then they could tackle that with a good dose of Jonny cash and some lyric replacement...."LEGS! Is a burning thing, and it makes a firey ring!"
http://www.youtube.com/watch?v=gRlj5vjp3Ko

But no! there is a lot of neuro issues, weakened swallowing on one side being the biggest deal. She has booked me in for a EMG (not pleasant) and promised to call rheumatology on monday.

Monday came and after waiting most of the day without a call, I rang rheumatology to find that they are all hiding. They have the answer phones on (sometimes). In the end I rang the GP again. They have chased it and were really shocked to hear from the rheummy that he wants me to take the Cimzia again as there are no other drug options.

Crapola

The GP says he would not touch the stuff with a chemical suit on and a force field if he were me and yet the rheummy wants to stab me with it!

The drug appt at the hospital is at 12.30 today, an hour or so to go and not the faintest idea what I am going to do.

EEK!

4 comments:

deac-in-training said...

Oh Wonky! I am so sorry! What a disappointment. (An understatement, I know). That wonderful sense of humor is intact and I think must be your greatest weapon against incompetant Dr's and loony roommates. It has edge and heft, though I imagine sometimes you must long for something that can cut through this disease. Know that I'm thinking of you, praying for you.

Lene Andersen said...

Aw, crap.love your description of the whole thing, but... aw, crap.

I'm so sorry. This really, really sucks.

Wonky Warrior said...

Thanks for the comments girls, I saw some drs today, it looks like they need me admitted again. Have managed to get them to wait a week but then it is in there again... I'm sure I can hear the nutty beacon being wound up in preparation...;-)

Wonky Warrior said...

ps I did have the cimzia and not stopped singing Jonny Cash since! burns burns burns

Cimzia- it goes wrong

Hello all fellow wonkies and those bonkers enough to carry on following possibly the madest woman with RA's blog!

It has been a while since the last blog entry because the cimzia has decided to eat bits of the neuro system. It has also nobbled the RA pretty successfully. I have had enough blood tests to keep the Hampshire vampires in stocks for several months I'm sure....!

Therefore, Wonky Warrior has chosen some top musical themes having spectacularly flunked (and with some style) all known rheummy medicational options! (I have to come top of the class for something in life eh, involving most departments in the hospital- no mean feat!)

5) "Mamma mia here we go again" by Abba
4) "Led like a lamb to the slaughter." Graham Kendrick
3) "I will survive" by Gloria Gaynor
2) "I get knocked down but I get up again." Chumbawumba
1) RING OF FIRE Jonny Cash

Oh YES! It burns burns burns- ring of fire today.. stupid neuropain!

Anyway- major excitement on Friday afternoon, having had a great time zooming about in the power chair chasing a jubilant 2 yr old and her 15 yr old brother up the park with my PA and on the way back, ice lollies in hand, suddenly the muscles decide to pack up and mouth drops to one side.

I decide that the GPs might be a worth while call. The GP has a fit when he sees the state of the neuro problems and then ships me off to hospital as he wants me seen.

Now, I have no idea if you have been to the local A and E but bright shiney young drs who have no idea tend to lurk in this department. Unless you have broken your leg, had a heart attack or been scraped off the road after a motorbike accident you are pretty much sunk!

Memorable lines include;

"I see from your notes that you have RA- your hands dont look too bad- are you sure you have this?"
MY ANSWER- "How many 30 somethings have you seen with hands like mine then" (under breath MORON!)

"Oh right, Arthritis, what joint does that effect then?"

Following rituximab whilest in high dependency...

"Are you SURE you are having this for rheumatoid ARTHRITIS? Do you see someone called an ONCOLOGIST?!"

"You are young to have that arent you?" ANSWER "Yes, I will write and complain"

I am ever hopeful that one day I will see Dr House coming out from a side room and will say "ah, come in for some indepth investigations" following a week in a private room with fresh flowers and smart en suite loo while he researches my case with his learned colleagues, "this is a case of bumpuslumpusouchouch disease and not Rheumatoid at all, take this tablet and you will be fine" but he hasnt turned up for work in the NHS yet!


Anyway, in the absence of House MD, the registrar was on the ward and did a great job of a neuro exam and explained that in no uncertain terms it is the Cimzia causing the issues.

Obviously the siren has sounded and all the local nutties have come in for admission at the same time. Mrs Potato is in the bed next to me who is trying to escape with all her might because she hasnt even bough any potatoes for tea...Wailing "I want to die" and me thinking "If you dont stop helping me and mr pillow will help you on your way...!"
I wonder if it was "just" the burning then they could tackle that with a good dose of Jonny cash and some lyric replacement...."LEGS! Is a burning thing, and it makes a firey ring!"
http://www.youtube.com/watch?v=gRlj5vjp3Ko

But no! there is a lot of neuro issues, weakened swallowing on one side being the biggest deal. She has booked me in for a EMG (not pleasant) and promised to call rheumatology on monday.

Monday came and after waiting most of the day without a call, I rang rheumatology to find that they are all hiding. They have the answer phones on (sometimes). In the end I rang the GP again. They have chased it and were really shocked to hear from the rheummy that he wants me to take the Cimzia again as there are no other drug options.

Crapola

The GP says he would not touch the stuff with a chemical suit on and a force field if he were me and yet the rheummy wants to stab me with it!

The drug appt at the hospital is at 12.30 today, an hour or so to go and not the faintest idea what I am going to do.

EEK!

4 comments:

deac-in-training said...

Oh Wonky! I am so sorry! What a disappointment. (An understatement, I know). That wonderful sense of humor is intact and I think must be your greatest weapon against incompetant Dr's and loony roommates. It has edge and heft, though I imagine sometimes you must long for something that can cut through this disease. Know that I'm thinking of you, praying for you.

Lene Andersen said...

Aw, crap.love your description of the whole thing, but... aw, crap.

I'm so sorry. This really, really sucks.

Wonky Warrior said...

Thanks for the comments girls, I saw some drs today, it looks like they need me admitted again. Have managed to get them to wait a week but then it is in there again... I'm sure I can hear the nutty beacon being wound up in preparation...;-)

Wonky Warrior said...

ps I did have the cimzia and not stopped singing Jonny Cash since! burns burns burns