Date: 08.07.2009
From: Emma
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Subject: Humira Blog
A week from now i'm going to start Humira injections and since it was first discussed as an option back in April i've don't countless amounts of research and found some really quite frightening information, but it's still the best course of action for me take right now so i'm going ahead with it. Through my research though i've found very little in the way of information from patients on the drug or receiving Anti-TNF treatment in general and decided to start my own blog that will follow each injection, how i feel, side effects, improvments, reaction, any complications and advice in general and hope to provide people in my situation with some first hand information. Im here at: http://myhumira.wordpress.com/2009/07/08/hi-folks/ and that's my introductory post. The first proper post will be on the 15th July when I receive my first injection. Thanks for reading and feel free to spread the word. Emma
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Date: 09.07.2009
From: Lynne
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Subject: Re: Humira Blog
Hi sweetie we don't need a proper post .. just you ..thats all.. we come here to chat about things other people don't understand.. we just talk about how arthritis affects us.. please feel free to chat on here.. there is some good support..
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Date: 09.07.2009
From: val h
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Subject: Re: Humira Blog
emma thats a good idea 4 people who wish the information. but dont forget to come and visit us 4 a good moan or scream u can also give good news. we dont mind we just like every one to keep in touch. good luck hope it goes smooth 4 u. keep in mind we all react different so it will be a personal acc. which will differ for each person which is prob why u have not heard from many people but will pop on from time to time to c how u doing
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Date: 09.07.2009
From: Jill
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Subject: Re: Humira Blog
goood luck Emmma....how I accept my meds and be positive about taken them is this... If I wasnt on them I would be far far worse(was always hospitalised b4 meds....) and also althose scary things I read about the side affects infact havnt happened to me, apart from fatigue, which is part and parcel of my prob anyway, and also the sicky feeling, apart from that and oh yes mouth absesses, its been a small price to pay for the benefits of the meds... we r all different as Val said, also ive found, reading Too much can be a worry and not helpful....Also we r looked after very well, and as long as my Blood tests come back Normal, I k now that my body is coping with the Toxic rubbish I have no choice but put into it.... so all in all Im happy that I take these wonderful meds, becos its saved me from detiriorating(cant spell that word today LOL) and thats Y I take them... i think your blog idea is gr8, trying to get on it, but my puta wont cut and paste for me... will read with interest, Im sure U will be lots bertter very soon lots love Jill x
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Date: 09.07.2009
From: Lynne
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Subject: Re: Humira Blog
Sorry emma that didn't come out quite right. What I meant to say was I don't need a proper post to talk to you. You can talk to us about anything like val and Jill said. Blogs a great idea. If you want to shout and scream or just chat about feelings you can't share with loved one, or they don't understand.. this is the place, everyone very supportive.. Great bunch of people
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Date: 14.07.2009
From: Emma
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Subject: Re: Humira Blog
Thanks everyone for the support :) I've had RA/Inflammatory Arthritis since I was 14 and i'm now 23. It's been a rough ride as nothing has stopped the flare thus far but i'm hoping Humira might do the trick, though I had the same hopes for Methatrexate. The journal is for my own use as well as anyone who might be interested in some of the more personal aspects that some folk might not be comfortable sharing on a forum as well as something I can look back at over the years to see what has changed gradually if not significantly. I appreciate the support and it's fantastic there are forums for us to come get together and vent and share good news because sometimes it's incredibly hard for your friends and family to understand how difficult the disease is to live with. Don't worry Lynne, i took no offense to your comment at all and saw where you were coming from :) Hope to get to know you all better. Emma
x
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Date: 14.07.2009
From: Lynne
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Subject: Re: Humira Blog
Emma we all all keeping our fingers crossed for you in the hope that the Meds work. Gosh sweetie you were quite young to get it. You would be suprised at the subjects we talk about on here, feel free to have a shout and stamp your feet. we all do from time to time
((((((((( LOTS OF HUGS)))))
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Date: 14.07.2009
From: Emma
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Subject: Re: Humira Blog
Thank you Lynne, I was just reading through some posts and was curious if you were the same lynne who had to come off all your drugs to qualify for Enbrel? If so how did that work out for you? *lots of hugs back* :)
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Date: 14.07.2009
From: Lynne
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Subject: Re: Humira Blog
Yes that's me, was in a bad place then when no meds. could not believe how bad I got. Now I am much better thank you . can manage alot better now on enbrel. Hope yours work sweetheart x
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Date: 15.07.2009
From: Emma
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Subject: Re: Humira Blog
Good lord, i found that absolutely disgusting that you had to sacrifice your health so much in order to get on the Anti-TNF. I hope you don't think i'm prying too much, but was this in England? It's just I live in Scotland but my boyfriend lives down in England and recently asked me to move in with him. I would like to, but we've talked about how i've just started this new treatment and how it isn't as easily funded by the government in England, only in exceptional cases which kind of sucks for us. It's been 24 hrs now since my fist injection and I woke up this morning without my usual aches and my thumbs aren't stiff and almost entirely pain free for the first time in about a year :o ! Could be conincidence so I guess we'll see how i'm feeling by the time the next injection rolls around :)
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Date: 15.07.2009
From: val h
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Subject: Re: Humira Blog
emma glad u feeling ok today and hope it lasts
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Date: 15.07.2009
From: Emma
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Subject: Re: Humira Blog
Thanks Val! This would some amazing relief if I get the benefits this drug has given others. Some respite is very welcome :)
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Date: 15.07.2009
From: val h
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Subject: Re: Humira Blog
fingers r crossed 4 u and toes just to b on safe side dont over do things though u know how easy that is look after your self :-)
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Date: 15.07.2009
From: Lynne
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Subject: Re: Humira Blog
Hi emma yes it was in fact lancashire. If your on It already I don't think you will have a problem getting it in england. I recently moved counties and had no problem getting if. What you do need though is a letter from your rheumy in Scotland to give to your new GP in England stateing what your on. You need to do this asap as you move cos it does take a little time to get the paper work done. Also make sure you have extra meds before you moved just in case it takes a month or so. You also need to make sure your new GP gets you in to see your new rheumy ASAP.as it is only your rheumy who can prescribe your meds. Good luck
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Date: 20.07.2009
From: Jules
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Subject: Re: Humira Blog
That's good advise from lynne I didn't do that when I moved and so it took me nearly two months to get my meds
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Date: 21.07.2009
From: Lynne
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Subject: Re: Humira Blog
Hi emma how did you get on xx
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Date: 25.07.2009
From: Emma
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Subject: Re: Humira Blog
Hey Lynne. The first injection went great :] Stung like a bitch, but I was prepared for that. Injection site didn't bleed or react but it did hurt for about a week, like it had been badly bruised? The day after the injection I noticed a massive difference. Woke up without aches and pains and no stiffness, my thumbs didn't hurt even when i squeezed them really hard and I could kneel on the floor. It's almost time for my second injection and i'm actually looking forward to it now as the aches have slowly been creeping back :[ Hopefully the more doses i get the pain will retreat completely *crosses fingers* That week or so though was wonderful <3
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Date: 25.07.2009
From: amber
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Subject: Re: Humira Blog
Hi Emma
It's a wonderful drug if it works for you. Fingers crossed for you that it does and suits you.
Took me ages to get Embrel. Had to do 12 months on Sulphalizine (sp?), then 12 months Methotrexate and then the Rhuemy nurse specialist said i should be able to go on it next time i see the specialist, as the others just wern't working on me at all. So when that day came he didn't even mention it and tried to whisk me off with no word about it. So i pulled him up on the matter and said i had been told i could have TNF's on my next visit to you. So then i got put on it. They don't seem to like to advertise the fact that you can go on TNF's to much, must be due to the cost. My Specialist told me it cost 8k per patient for 1 years supply of Anti TNF's eek! That was about 4 years ago now, so don't know the cost these days.
But have had to be off it for the past 2 years along with the Methotrexate (i was taking both) because i have been trying to get pregnant.
Good luck with it all and hope it works for you. I'll have a nosey at your new blog and see how your getting on, Should be really interesting. Look after yourself Emma and everbody else. xhugsx
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Date: 25.07.2009
From: Lynne
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Subject: Re: Humira Blog
Hi emma pleases your getting some relief at last. Know what you mean about the injection site being sore I'm on enbrel and it's the same with that. The relief it gives is worth thepain xx
hi Amber your so right about challenging your rheumy. That's one thing we always advise newbys to arthritis to do. Other wise you do not get the treatment we so desereve. Sad fact. Well done you xxx
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Date: 12.08.2009
From: Brenda
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Subject: Re: Humira Blog
I have a condition called seronegative spondyloarthropathy' I was [ut on Sulphalizine, which I was told to stop it by my docotor, it was effecting my liver and lungs, so now I am told to start this drug called Methotrexate. I am not sure if I should, after the problems I had with the Sulphalizine. I have swelling and the doctors hope this will work.. I am also not sure about all this side effect.. I have asthma now, and the shortness of breath does scare me a bit.. I would hope someone can make me feel better about this drug.
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Date: 12.08.2009
From: val h :-)
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Subject: Re: Humira Blog
hi brenda can not help with meds as not on those think jill might be but is away at the moment but i am sure they will monitor u well while taking it they would not offer it if it was not going to help u try it u have nothing to loose if no help or side affects to much stop but try u will never know till u try good luck
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Date: 12.08.2009
From: Brenda
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Subject: Re: Humira Blog
Hi Val, Thank you so much, I am glad there is something on here so we can write about it. I will try it, I just hate side effects...
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Date: 12.08.2009
From: val h :-)
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Subject: Re: Humira Blog
i know but they have got to be better than lots of damage to your joints :-)
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Date: 12.08.2009
From: Brenda
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Subject: Re: Humira Blog
Val,
I have pain and suffer for years, I been to so many doctors a test, I was told I have 2 contions and this is all depressing, the specialist don't think this Methotrexate with help. But He wants to try me on this other medicine, but with the NHS , I need to see if this works first, and I been doing reserch on my condition, with the Methotrexate, I am just an ginny pig. I have swollen joints that is in my bones also, I had an MRI, this is how I know this information. I have to switch specialist , because the first one was not listening to me at all.
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Date: 13.08.2009
From: val h :-)
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Subject: Re: Humira Blog
poor u we go to them expecting help and answers .they some times loose sight of the fact that with out the patiants (oops)they would have no job they should listen one day they might have it and i hope they get doc like them selves who do not listen and give right meds :-(.well give them a go u both know its jumping through hoops but if it is what it takes to get meds you need then go for it this specialist sounds ok u have to trust him if it is the only way to get other meds wrong i know but called playing the system
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Date: 13.08.2009
From: Sue Morrison
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Subject: Re: Humira Blog
Dear Emma My name is Sue & i work for a research co in London. In September we are going to be carrying out PAID research for patients being prescribed Humira.
If you would like to take part in the research please email me on
sue.morrison@ems.eu.com
or
anna.marc@ems.eu.com Hope to hear from you soon wishing you well regards
Sue
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