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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Oh Jenni I'm so glad I'm not in your red boots at the moment. Decision time and such a difficult one for you to make. I'm sure you will be guided by the endocrine specialist but when the times comes you will know what is right for you. Intuition is invariably the way forward and if you have doubts ... don't! Poor little Bernice hope she starts to improve soon.  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 3/23/2010 Posts: 32 Location: Stratford on Avon
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hi Jenni Just to say Good luck and God Bless I'm sure your doctors will take the upmost care of you. Best Wishes Trisha aka Travelgirl life is too important to be taken seriously Oscar Wilde
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 62
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Hi Jenni
I have just come in on this and wish you and Bernice well. I really don't know what to say about the new drug knowing how ill you have been in the past. Hopefully you will get more information tomorrow which will help you decide.
Love Brenda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Jenni,
Thinking of you and Bernice, and hoping and keeping my fingers crossed that all will go well with the new drug.
love,
Barbara
XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Been thinking of you Jenni - how did it go with the endocrine doc?
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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How did things go Jenni?
Much love
Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Dear Jenni,
I have just read your posts on your new drug and Bernice being
poorly too.
I hope all goes well with the new treatment and that Bernice is soon
fighting fit again.
With much love,
Fiona
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Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
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Hi Jennie , I am so sorry to hear that you continue having no let up with RA. I to might be going on cimzia! Ive just come onto the forum to try and find out about it, so was pleased to read your post. , but reading it & knowing your experience I have to say has made me somewhat fearful.I do not imagine you will remember but I posted about a year ago , that although I passed the Das test for anti TNF the new rheumy. didn,t think Ikneeded it. when Iwas at A very low ebb after having uneffective treatment For 6 yrs. Every one including you advised me to try another Rheumy & I finally had the courage to dump my ra.team 3wks ago &saw the Rheumy who first diag nosed me who I completely trust. It means an hours drive but just to be there & see a tight team is a relief. AS a result, he thinks anti tnf could help me & so I now have the second das test in a weeks time. I have just been praying to pass & not really worrying too much about the side effects .I do know your med. history & all your complications, so can understand, your fear. I understand it is a Chrones drug & can have a good result ,with in a week. I have given you my backgrond , boring I k now I thought if I get on it, that would be in May, we could help each other & compare notes. I am somewhat surprised he is putting me on this wihout trying the other anti tnf,s first & was wondering if it might be a trial.Iwill be thinking of you when you start this & pray to God it will turn your life around ,so you can have fun with your family. Looking forward to your posts & take courage. love from Rose .,seeing o.rthopaedic bloke to day re. hip replacement. Its all go with Ra never a boring moment. lots of good luck , keeping fingers crossed xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi
I have been to see the endocrine dr and also spoken to various family and friends about the drug.
I think first things first, if it was 10 yrs ago before I had tried a single TNF or B cell or T cell treatment I would have absolutely gone for the Cimzia. no question. It is a really good drug with pretty stunning, quick results. When the "risks" are academic and you are so desperate, young and want to be a mum and adopt some children it really is a great option.
It works in a similar way to the other anti tnfs- but there is a key difference in the structure of the molecules in the drug. It is also much less painful injection than some of the other injectables out there and results in less than 24 hrs of dose in some cases but all who are going to respond do so within 6 mths.
You have a "Loaded dose" the first 3 times and then lesser amounts so it means you can reduce the amount you have over time. getting down to one jab a fortnight i think it then goes to once a month..
They are much more open about the risk data than they were when I started- 7.7% got serious infections on placebo compared to over 15% on the Cimzia. That is a similar profile to all the others and if you are able to limit your contact with infectious people, dont have the serious reactions I have had all the way through then great!
The pack with the drug is very impressive- it is FULL of photos of people running up steps, laughing and looking gorgeous- not a rheummy hand in sight. It reminds me of the Tampax adverts all those slim, happy women rollerskating along the beach with their dog! lol!
But for me- I do not have just the RA I am diabetic due to the Addisons disease and so my risk is already pretty high. Plus now 5 serious adverse events on the biological treatments. The endocrine dr expressed some alarm that after my track record I was even considering the drug but when I explained I have such severe disease accepting life as a fully disabled woman with constant crippling pain and being dependent is not a life I choose lightly.
Especially with a jubilant and active 2 yr old, a marriage and other relationships with friends and family that are important to me plus the stuff I actually WANT to do!
Anyway- endocrinolgy wise- the bloods are not good. the hydrocortisone is shooting my hormone levels all over the place and I feel grotty plus the RA is bloody awful. heart rate and BP all over the place and sudden weight gain.
Endocrinology are taking me into hospital for a day for short interval bloods through the day to check things over.
So no Cizima at least until I am doing a little better endocrine wise.
Much love- sorry to be depressing!
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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o Jenni sorry to read this, you seem to have so many hurdles,
so sorry you have to deal with all this but don't give up, ever xx
I really hope they can help you somehow, do you have a date for those endrocrinology tests?
How is Berenice? Is she getting bit better now? xx
lots of love and big gentle hug from Liz xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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So sorry to read this Jenni - you have so much to contend with, and so many things to take into consideration. I hope they don`t keep you waiting too long before the day in hospital, and that this will prove beneficial. I wish you could be in someone else`s body for a while - preferably a young, fit, pain-free body! Take care, Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Dear Jenni,
it sounds as if the decision has been removed from you for the time being. It is hard to face a 'no quick fix response' but you are so well used to this now. Sending you lots of positive vibes and praying that someone , somewhere is working on the safe,answer to it all in a lab somewhere.
Love Eleanor x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jenni,
Sorry to read this but at least it has been decided for you for the time being.
Hope there is a lot to be gained from your day in hospital.
Love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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I can't say any more than has already been said on that I am pleased that someone is finally going to keep an eye on you and at least find out if they can help with some of the problems you have. Am always thinking of you Jenni. Take care.
Julie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Can't add anymore except to say i'm thinking of you
much love
maria x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jenni Sorry to hear this, but at least the dire state of your current health problems will now perhaps be fully investigated and possibly a more appropriate long term treatment plan will emerge. Thinking of you Jenni, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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So sorry to read all this Jenni.
I do think it is the best option though at present.
God Bless,
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
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Hi Jenni, Thank you for the great information about cimzia, when you talk about the positive side, it sounds good, especially running along the beach ,just to walk would be good., but Ive got a love,ly tampax ad in my head now. Back to you, It must be some relief to know that they are really not allowing you to start cimzia before they have taken responsibility with all your health problems, I really can,t imagine how you cope, & my heart goes out to you.lets hope that your time in hospital will give some fruitful answes. Ill post if I get on cimzia, Thinking of you, love Rose xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Jenni ok so lot to mull over,but most of all endocrine wise things not good enough to try as yet sorry hear this hun,the day in for test sounds good sending u hug and my prayers for things all round to improve. things can be complex when more than 1 auto immune problem but the endocrine person sounds very good end of day its your body life,with your family also to consider.not easy hun but here for support thinkking of you melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 35
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Thinking of you Jenni - you really have so much to contend with. Jo xx
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