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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi
Its been a few days now since I had Cimzia 2.
All in all it went well, I had it on the day unit where things went so wrong with the Toxcilizumab (Toxyloxy to you lot!) and I have to tell you that apart from Dr Useless telling me that it was all in the mind, although stuff in the mind can seem very real (ie I am delusional) the Nurses, Sisters and other staff were under the same "delusion" that I had an anaphalactic shock and took NO CHANCES.
They were clued up ie explained that it wasnt a drug they were familiar with, and took the leaflets I had brought to read there and then. The sister was a little embarassed about this and I said immediately that I was delighted they had. They cannot possibly know all the new RA drugs coming through can they? I want them to know it!
Much to dr useless' constination they wouldnt give the drug until they were satisfied they were set up and ready. He gave me some piriton as we had discussed.
They got a new mask and oxygen, a tray with IV bits on and got a most reluctant Dr to write up adrenaline, steroids etc and it was then all ready in case.
The nurse swabbed my tum ready and while she was doing it I showed her my 2 "old faithful" veins if needed, she noted it in my notes on the top- stuck on in case of shock----
One jab went in, then they did the second jab. Double dose ie the loaded dose this time.
Within minutes of the drug I get a sore throat feeling. The throat does not swell or itch or anything like that it just feels sore like sandpaper has been down there. Then I get groggy and dopey, which could be the piriton.
One thing did make me laugh. Dr useless has a very inflated opinion of himself. He has mastery over patients heart rates and BPs apparently..... When i came in my heart rate was 130. I have tachycardia. it is part of autonomic neuropathy brought on by a reaction to rtx, my bp despite meds is 150/80 which isnt too bad. anyway. he decides this is because I am "a little anxious" and when I tell him I am not frightened this time as I know I was not allergic last time, he pats my hand knowingly.
git
funnily enough after 20 mins of him being there my heart rate was 132 and BP was 150/88 if anything up a bit!!! HAI will need to see a cardiologist at some point I think.
it didn't come down all the time I was there.
The dr then told me ideally I could stay 3 hours but after 2 I felt ready to come home. My temp was up a smidge (as normal for me really in evenings) but they let me home.
The sore throat feeling has now passed and I feel much more "alive" and "well" in myself. I don't think there is such a dramatic change as there was the first dose. BUT. Definately brighter. Able to roll a bit in bed, able to get up better etc.
I am seeing the rheummy on thurs, well rheummy nurse but the big chief is on that day so she can grab him. Im afraid the increasing hardness in my lower leg, lower arms with a few more lumps and weakness of muscles continues.
I go to hydro on friday to try and help my stability so I can stand better.
on the 30th I am seeing the cheif endocrine man as I am "complex" apparently...!
There! So now you know!
Love
Jenni xx
how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 176
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Lovely to read your post!
Definately brighter. Able to roll a bit in bed, able to get up better etc.
I wish you a little of this every day! AND the sun is shining!
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Oh Jenni,
How frustrating you must feel some Docs have no idea but on a brighter note but it seems to be working
for you. Fingers crossed
rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Very happy for you Jenni  Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Great news Jenni Love, Doreen xx PS how is Richard?
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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What an absolute pratt that ruddy doctor is (I was going to say something much worse, but decided against it).
I'm really upset that the hardness in your leg etc hasn't subsided but it is early days yet, and things could get better as time goes along
Thank goodness yo are now able to move at least a little more easily. Everything little extra movement has to be a bonus.
Praying that you will continue to improve - albeit slowly.
Love and prayers for your rheummy and endocrine appointments.
Much love to you all
Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jenny Thank you for your update - much appreciated  Good to know it is all going in the right direction, and have a good positive approach ( and a sense of humor! ) to the medical profession, you certainly need too these days. Hope you get on well on Friday at the hydro,to start building up your muscle strength. Take care, Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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 Good to read your update Jenni um as for doc well. good news more movement,all very best for thursday and endo apointment also for hydro and for chief to help re hardness of leg,prayers thoughts melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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posted me twice lol no stuttering herelol cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jenni, Great news, so glad the new meds are working, Lets hope you go from strength to strength. Sending hugs for you all Lorna xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Jenni - I am glad to hear that you are still getting a little relief and a bit more movement. Glad to hear that you are seeing the main endocrine man though.
Your comments about your doctor make me laugh - I call my rheumy Professor Pig :)
Julie xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, sounds good so far!! so pleased its going so well," a bit more mov ement" and "able to roll over in bed" so pleased its all going so well x x x As for the doctor, lets just all guess what I'm thinking!!! BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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Jenni the weakness of the muscles could go with Scleroderma ?????? causes something with the muscles not sure what ? i got tested as once i did not walk well . just encase you need to check it out Christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
So glad the Cimzia is continuing to work for you. You are so brave after all you have been through.
As for Doctors ...... it must be a pre-requisite in training that they must have delusions of grandeur. I think it stems back to the good old days when a doctor was considered to be god-like but at least he was respected for the service he gave as he had time to listen and knew your family well. Not like today when the computer has already written the prescription or diagnosed your condition before you have barely put your bum on the seat.
Hope your appointments for later this week go well.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Jenni
I'm really pleased that your new treatment is going well, it's no more than you deserve after all this time. Glad you're able to move a little more. Enjoy your hydro!
I hope Richard is improving too.
Love Lyn
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello Jenni, it's lovey to read that you are still OK on the cisimy whatsit. Shame that docs such a twit though. Lets hope it's the start of something really good. Glenys.x
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Rank: Member
Groups: Registered
Joined: 12/7/2009
Posts: 27
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Hi Jenni
Glad to hear the new treatment is going well. hugs x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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great to hear about your progress.
Love
Maria x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi all
Seeing the dr tomorrow (non twit division) and he is going to poke my legs about abit.
Kinda hoping it will be alright, but the weakness etc is really rough. TBH the nerve pain in my muscles and legs is not much fun at night, I have been trying with 2 nortryptalin as I cant cope with the dreams when it gets to 3! but the pain, OOOooooh the pain. "oramorph my friend!" I thought, but have slept all morning with it.
Never mind.
At least on the cimzia I feel well in myself, feeling ill all the time is far far worse.
Love Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Prayers for tomorrow.
Love you loads
Jeanxxxxx
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