We now know what the drug i will be on as to when i get it that is another question. I will have to go to walsgrave hospital to be given that,the x-ray is done had bloods done for rheumy and now i am waiting for an appointment. I had to wait nearly 2hrs for the x-ray and now i am fed up and very exhausted.
The drug is cimzia so if any one knows anything about it comments would be welcome. I know they will be injections and i know how much they cost which is a lot of money,i just hope they work as i have forgotten what it is like to have a pain free day.
Hope you are all not suffering too much today. I will keep this short as i am shattered. Have a lovely afternon everyone of you all.xxx
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sylvi
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Yayyyy well done sylv,I'm sorry I know nothing about the drug but I'm so pleased for you that finally you are seeing light at the end of the tunnels:))))) I'm sure there will be other friends on here that will be able to help you.great news for you lots of love Michelle,xxx
Good news Sylvi .Let's hope this does the trick for you. You've had to wait too long.
Hello Sylvi, hope this does the trick to help you feel more in control & start living again. You so deserve this.
lots of
love Alison xx
Great news sylvi, I was offered cimzia but because i am due to have an operation on my parathyroids it was changed to Enbrell as this comes out of your system quicker when you stop taking it. My Rhuemy spoke highly of both Cimzia and Enbrell apparently very similar drugs. Hope it works for you. My Enbrell comes tomorrow so happy days. Hope your feeling a tad better sylvi . soft hugs lena xxx
Hi Sylvi, Sorry to hear your bushed, but happy that you have finally received the news you have been waiting for. I downloaded some information and sent it separately to you. Have a good rest and sleep if you can. xxx
Hello Sylvi! Just wanted to say I am very happy for you that you're getting biologics!! I don't know much about Cimzia but I am a huge anti-tnf groupie as they've worked exceptionally well for me. I hope this gives you hope and that you'll get your date for the first injection really soon!! You very much deserve to be painfree and I anm keeping my fingers crossed!! All the best, Christine xx
cimza is one of the newer ones.. think it does give results. it is an injection not A PEN ,I saw it but i preferred a pen so if I GET approval??!! tomorrow that is my choice
Pleased for you and jealous lots of love
Alison x
Sylvi hope this works for you & your pain free days stretch ahead into the future.
Excellent news, you so deceive it, i hope everything goes , Lots of love Shirley xx
Great news Sylvi 0 good luck - Sci/ Joanne takes this drug too I believe. Tilda x
Hi Sylvi,
#waving# ( ouch that hurt :))
Congratulations on the new drug, but sorry cause qualifying means your DAS must be over 5.1 or more :/
Is this your first anti tnf?
Its been a while since I've been on hu however next Wednesday will be my third dose off cimzea.
I don't know loads about it however I know you inject every second week, the first three injection times you do two injections rather than the one this is apparently to build you up and give it a more intense blast to start with, they are not pens like the enbrel but some fancy syringe which is very RA friendly, you have all the usual risks involved with an anti tnf drug you now need to be extra careful for picking germs bugs etc up as its designed to lower your immune system which I'm sure you already know, you also "this is the bad bit" have to be careful with your food and there is some foods your recommend to avoid soft cheeses ( sobbing here as I love goats cheese) mayonnaise, certain raw vegetables, raw honey, tofu, raw or soft boiled eggs, you have to be extra careful that your meats are well cooked there maybe more but can't think.
You have to contact your RA nurse whenever you pick up a bug or been in contact with kids with chicken pox and other illnesses so they can decide whether you should skip a dose or not.
You will be given a warning card to carry everywhere with you, your supposed to show it to every doctor, nurse or dentist you see even if its only for a check up. And you will get a green leather file with a DVD and a diary to monitor your progress etc.
Your RA nurse may or may not have told you but while your on cimzea , cimzea pay for your membership with NRAS , not sure about you but this has saved me £25 already cause mine was just about to run out, you also get the option off support from shaw trust which the cimzea drug company fund, however its for people who are off working age and want to either continue working or to help them find something suitable.
I'm waiting for them to contact me back and hoping they can help me stay in work.
If your nurse hasn't mentioned the NRAS membership its worth you asking her, I don't know if your a member off NRAS or not but I find I get amazing support from them and loads off interesting reads etc.
When do you start your cimzea?
I really hope this is both mine and your wonder drug and I don't know about you but I would be happy with one totally pain free day a year, even better one and month or one a week, but wouldn't it be a total dream to be pain free and to not have to rely on the wheels of your scooter or my wheelchair.
Fingers crossed for us both.
If you want to ask anything else about cimzea let me know and if I can help I will.
Julia,thank you very much for the info,i have been told very little at this stage. I have been a member of nras for years and yes they are very helpful. Soft cheese doesn't bother me as much as mayonaisse does as i like a drop of the stuff. Thats a lot of info for me to digest,but if it gives me like you say one day of being painfree it has to be worth it. My das score has been over 6 for a while now that why tnfs have been mentioned before,but until yesterday the paperwork wasn't done. I had had the bloods done for it,but now the x-ray has been done and the paperwork is being done and the letter to my dr is being done as well,it is just a waiting game for the appointment.I have to go to walsgrave hospital as the eliot don't do them so am waiting for the letter.
Many thanks for the info and i hope you soon get some relief with it and i look forward to hearing how you get on with it.xxxxx
lets hope this ( cimzia ) stuff ... gives you plenty of pain free days ,, dont worry about the cost ,, your worth it .. fingers crossed :)))) great news
Thank you all for your comments here and you have all been my cheerleaders as you have seen me suffer and kept me going and for that i will be eternally grateful.xxx
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