Discussions that mention humira

Arthritis board


Hi Ronnie

Im 36yrs old now and have tried every drug under the sun apparently, so they have put me on a drug call Humira (self injecting) fortnightly but prob b ever 10days soon as wearing off quicker than expected. My fingers were that bad that I couldn't pick anything up to be honest, they just bent back on themselves is the best way to describe it. The pain was unberable to be honest as well unable to do anything so had no choice unfortunately but for them to operate. Some fingers the false joints didn't work as the bone is crumbling but others they are false at the middle joint and fused from there to the tip. So far only had a couple of knuckles done - at least I can use my hands more now, pain is better but still need the joints to be re-replaced now and again and obviously look better so don't get as many looks either, which i am sure u know wot i mean. I am shattered all the time and sometimes just aint got the energy to do anything but have to pull myself together as still need to work and also don't like my hubby to worry to much. How old r u now???? I should really give up work but feel that if i don't keep myself going i feel worse also i can't afford to give it up to be honest, although i keep getting told i should but ho hum. Wots ur Rheumy doing to help with the anti-tnf meds etc???? Have u tried Methotrexate, Cyclosporin etc?? Do u have psoriasis as well????:jester:
Speak in a mo
Hi

Ouch, sounds so painful. I am now 50 and struggled on at work up until last year when my mum was diagnosed with cancer and I need to have bowel surgery myself, so collapsed at doctors in tears and he signed me off for 6 months, then another. So really could go back if I felt well enough, but to be honest at my age and with all my problems I probably wont. Money is very tight and wonder whether we will cope some times, but the relief of not having to make myself get to work was wonderful and I can now choose to sit all day and do nothing or get out and about, but when working I had to get to work every day feeling awful. I have been on methotrexate but my hair fell out and my liver count shot sky high and was rushed to hospital for 4 days, also had two blood clots. Been on all sulphasalazine, arava, methotrex etc. Tried to get Humira last year and they told me I didnt meet the criteria!! But I have badgered my gp to see whether I can, and he has given me Nice guidlines which say I should now be able to as I am worse. My advice to you on work is if you can manage without the money do it, as you will feel a huge relief. Your hands sound so bad, mine are painful but I can still use them. Opening packages etc is annoying and picking things up is difficult. My Rheumatologist appt is in 3 weeks time, (last one 3 months ago) so I will see what they can do for me again. Did you have any trouble getting the Humira? Are you registered disabled? Do you claim DLA? If not, why not try as that may help you with your work hours.

Ronnie :)
Blimey, I hope ur mum gets better. I know its very difficult looking after parents when they r ill as I lost my Mum in May and nursed her for the last few months of her life and me Dad a year and half ago - and to be honest with the added stress (even if u don't think u r) can actually cause probs with the PA and P so I advise to get as much help as possible. Fingers crossed that she is over the worse and that ur op does the trick. xx. :angel:
Unfortunately, please don't take this the wrong way, but as I am only 36yrs I am so trying hard for this bloody disease not take over my life, even though it does sometimes. Its very hard sometimes to pretend all is fine when it isn't half the time but even though my Hubby is great and trys so hard to understand and hates it when I don't let him know when I am in pain etc, I feel I have to hide this from him as there is nothing he can do to take it away and I don't want him to worry and upset anymore than I have too. I really do feel for him sometimes, after all he is the one who is pacing up and down the corridors for a few hours whilst i'm asleep on the operating table - Ha!. Love him. I hope u have a strong family support as its very important!!
I am I guess registered disabled but try not to admit it to be honest, I have the blue badge and the DLA but unfortunately still not enough to support us and mortgage etc and my hubby recently changed jobs and has taken a big pay cut. Did u know that u could possibly get ur car tax free as well???
Didn't really have any probs getting the Humira that I remember, unfortunately as we were living in Oxford at the time, the funding was confirmed there, then my hubby finished his 23yrs in the services so we sold everything and went travelling for a year so that woz put on hold, and then when we bought in Stafford and moved here they wouldn't transfer the funding so had to start all over again here. Thankfully they realised the severity and prior funding etc that they got it sorted relatively fast and then bobs ur uncle they delivered a 2mths supply to the door and I started. TO be honest it seems to be helping but unfortunately a bit late for some parts of my body as the deformities are already there but ho hum.
I find I get down a lot more than ever have though, i get upset over the slightest thing lately, not sure if its a combination of me mum/dad etc but very annoying when I am watching something thats funny and i start getting upset. Ha! Blimey u had a rough time hun on the meth, i have never heard of anyones hair falling out - u poor thing. Wot r u on now, have u tried Cyclosporin?? Unfortunately if u haven't tried every drug on the market the hospitals won't put u forward for humira so try wotever u can - u never know something else mite do the trick and u won't have to go on the Humira as to be honest its bloomin awful when taking and i get real bad acid reflux which i have never done before but its worth i feel.
Keep smiling sweetheart it can only get better (we hope) xxxx