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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello everyone
I am home from my final loaded dose of the cimzia. I just go for a maintaince dose every fortnight now.
Just to tell you how it feels for me. Most of you know that I have had serious and life threatening reactions to drugs in the past. I got to the point where I vowed not to have another biologic drug for the ra. Then things accelerated within the space of a few months and I landed in hospital unable to move and with the immune system just wrecking every part of me. The choices I was presented with were- 1) Full Chemo, 2) Bone Marrow transplant or 3) The new biologic Cimzia.
Having had anaphalaxis on the last drug I investigated the risk profile of all the 3 options. With consultation the 3rd option was better because even if I had anaphalaxis again they would almost certainly bring me back. the safety profile of the Cimzia is the same as the other anti TNFs ie you are 3-5 times more likely to get serious infection and having had a few of these I am wary but these days A and E do know much more about the drug profiles etc. the other 2 options take a long time, a lot of time away from the family, higher risk of serious infection and no guarantees I wouldnt be allergic to those drugs either. Still, we might have to face that route one day.
Anyway.
With Cimzia you have 3 loaded doses of 400mg (2x200) injections. The injection I can hand on heart say is painless- not even a MTX type sting and the syringe is ergonomically designed for rheummy hands to do although because of my reactions in the past I am still going to hospital for mine. Then you go onto a one injection a fortnight regime.
Cimzia belongs to a group of drugs called tumor necrosis factor (TNF) blockers. There are different types of TNF, and Cimzia binds preferentially to TNF-alpha. TNF-alpha is a naturally occurring chemical in the body that is involved in inflammation and other immune system functions. TNF-alpha can contribute to Rheumatoid disease by encouraging inflammation, and people with RA often have high TNF-alpha levels. Blocking TNF-alpha helps to decrease the inflammation and to relieve the signs and symptoms of RA and aims to control and slow the progress of the disease.
Interestingly, Cimzia is actually a fragment of a human antibody. It is produced in special bacteria that were designed to produce this human antibody fragment. The antibody fragment is then "pegylated," which means it is attached to a polyethylene glycol molecule. This process helps Cimzia stay in the body longer (so it can be taken less often).
Anyway- when I have the injection I have a piriton tablet first. then I wait 30mins. then I have jab one one side of the tummy and jab 2 the other side. within about 10mins I feel this prickly sandpapery throat like I have swallowed something without chewing or that I am recovering from flu. I feel groggy like my thinking and function is dragged down by lead weights and I have a sleep.
After about 2 hours I wake up and am bright eyed and bushy tailed. The side effects fot me are an increase in neuropathic pain (tackled with pain relief- gabapentin) that really is it!
the very day after the first jab I felt brighter and this has continued throughout the last few mega doses which have been equally well tollerated.
When I had the first jab my CRP was a huge 92 just on the RA alone. ESR in the 80s.
Today I have been told ESR is 40 and (wait for it!) the CRP is 20! It has not been here for a good number of years. I am very anaemic still- might need to take some pills to sort this and you know I have muscle weakness and ridgidity with lumps inside legs which have not resolved at all. But this together with the news that I have secondary addisons and a chance to reduce some steroid and the RA is being well controlled gives me hope, such hope of being functional again!
Isnt it nice to share some lovely news about a drug for a change?!
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 154
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Jenni, that is the best news ever!  I am just so pleased for you, you have no idea how much. I had heard good things of Cimzia, but knowing it is good for you without the dramatic side effects is just the best  I hope they can get to the root of your leg problems and the news about Addisons is better than it looked at first. Do hope Richard is making progress too, he must be so happy for you too. Take great care Jenni, Love Liz xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, thats fantastic news!!! so pleased for you  May it long continue. I will get my daughter to translate the info lol! she is doing biology and chemistry A levels, so she can put it in simple terms for her simple mum!! BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Wow Jenni, it looks as if something is working for you at last! Love, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 176
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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YEEEEEEEEEHIIIIIIIIIIIIIII
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Jenni - that sounds really good news! To be the best you have been in a while is great and long may it continue to improve! Hope the leg problems can also be sorted. XX Ailsa
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Actually,Ailsa, I've offered to go down with the old Black and Decker and remove the offending leg. Strangely, Jenni wasn't so keen 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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black and decker eh Jean?! You know where your friends are dont you- eh!
I would quite like some new legs actually- Some super model who could loan them out??
lol
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Such wonderful news Jenni!!!!
Julie xxx
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jenni, It is such a joy to hear how well you have responded to this drug. I hope it turns your life around and you have better movement than you have had in a long time, legs too. Little Bernice will hopefully then have mummy chasing at her heels when she gets into mischief ha ha  Seriously I really hope you go from strength to strength, its about time you got your life back the way you want it. Sending my best wishes for you and your family, hope Richard is well on the mend too. Love Lorna xx
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Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
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Jenni what wonderful news.,so delighted for you. Your esr & crp have come down so dramatically. Long may it last.As you know I am on cimzia, about to take the2nd loaded dose tomorrow. Like you my brain feels so so clear I am doing all sorts of Semi! intelectual pursuits & instaid of sleeping half the day I can carry on with another task.Hubby is delighted I can help him a bit more. My hand elbow & sh. jts are not stiff & painful in the morning which is great. Are you on mtx as well. I am & ihave been suffering badly with tummy aches & all thet goes with that, This has always been my problem, after only 10mg, of weekly injections after being on it for5mths Ihave to stop it. My consult. says cimzia works better with mtx, ..was thinking if your not on it I might be able to give it up. No side effects from cimzia though. Keep up the good work ,delighted for you Love rosexx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Wow Jenni-you SO deserve this! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Wow, Jenni, I'm so pleased for you. Long may it continue!
Love Lyn
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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treacleglaze wrote:Jenni what wonderful news.,so delighted for you. Your esr & crp have come down so dramatically. Long may it last.As you know I am on cimzia, about to take the2nd loaded dose tomorrow. Like you my brain feels so so clear I am doing all sorts of Semi! intelectual pursuits & instaid of sleeping half the day I can carry on with another task.Hubby is delighted I can help him a bit more. My hand elbow & sh. jts are not stiff & painful in the morning which is great. Are you on mtx as well. I am & ihave been suffering badly with tummy aches & all thet goes with that, This has always been my problem, after only 10mg, of weekly injections after being on it for5mths Ihave to stop it. My consult. says cimzia works better with mtx, ..was thinking if your not on it I might be able to give it up. No side effects from cimzia though. Keep up the good work ,delighted for you Love rosexx hi the cimzia gives you hurty tum too...
Im not on the MTX- it never did work and so its not necessary for me.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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That is SO good to hear, Jenni!! I truly hope you go from strength to strength on the Cimzia! Kathleen x PS I`ve been in touch with Elle McPherson about lending you her legs - I`ll let you know the outcome. We can`t let Jean loose with a Black & Decker!
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Spoilsport 
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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It is wonderful to read about your progress, Jenni. You have been through such a lot for a very long time. Everybody in your family must be really pleased to see a new Jenni.
May you go from strength to strength and start really enjoying your life. You so deserve it.
Much love Merete
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