Anyone on HUMIRA???

emsjane

Hi,

My Rheumy said she might put me on Humira if the methotrexate isn't working for me. Is anyone else on this drug?

I read on the leaflet that you can't eat cheeses like brie, camembert, feta and goats cheese!!!! Well im a vegetarian and i eat these all the time!!!!!!

Any advise from anyone about this drug would be appreciated, thanks

tillytop

Hello Emsjane

I was on Humira for a couple of years and it worked well for the RA. I didn't like doing the fortnightly injections but that was worth it for the benefit.

The "cheese warning" is because the drug is a significant immunosuppressant, you are, theoretically, more vulnerable to food poisoning type bugs and infections so avoiding unpasteurised cheeses is recommended. This is likely to be the case I think with any of the biologic drugs.

I know there are other forum members on Humira so I am sure you will get more replies in due course.

Tillyxxx

tkachev

I'm on Humira and its has been a blessing for me. I don't mind the injections and they don't hurt unless you catch a stretch mark.

Tilly top has explained the cheese situation very well. it's unfortunate that you love it so much and it is primary part of your diet.Pate is another thing to avoid.

All the best
Elizabeth

dreamdaisy

I've been on it since summer 2009 and it has worked wonders for my blood test results, but that's all. I dont miss the cheese any more, I did have some paté over Christmas and am still here but I think it is best to do as the docs advise. The most important thing is fighting the arthritis, slowing its progress and thus reducing joint damage. That matters. I wish you well. DD

emsjane

Thanks for you replies everyone.

DD, are you saying Humira didn't help with the pain????

Im beginning to wonder what exactly does help with the pain!!!! :?

dreamdaisy

Yup, I'm sorry to say that for me it is true and I reckon this is why: I am into my fifiteenth year of this and I went un-treated for at least five, so it all had a good chance to get a proper hold (which it has ) The pain is now mainly due to the OA which is in my knees and ankles and has come as a result of the joint damage caused by my PsA (psoriatic arthritis). Of course the humira, sulph and meth are not designed to help OA. Those who have reclaimed their lives thanks to the big H don't post much (if at all) as they are busy getting on with stuff, and good for them! Having the both kinds means that life is kinda different for me but that doesn't matter. When I began it my consultant told me I would be able to drop some of the tablets and lose the crutches. I am pleased to say I have thoroughly proved her wrong! Now, sit up and pay attention because this bit is important : just 'cos it ain't worked as I wished for me doesn't mean it won't work for you. If you have just the one sort of arthritis, and are relatively 'new' to all of this, then I reckon you have a fighting chance of success and that it can change your life for the better, and I sincerely hope it does so that you can join the ranks of those who don't need to post any more - now, wouldn't that be good? DD

emsjane

DD - Ive got this horrible feeling it's not going to help me either. Im 42 and ive had OA since i was 29/30 and it's only in the last 5 years that ive been getting some serious help! The Rheumatologist told me on Friday that i have seronegative RA, as i have arthritis in so many joints now but my blood test don't show the rheumatoid factor. So ive got this horrible feeling that the Humira won't help me either. Ive just upped my dose of Methotrexate from 10mg to 15mg for 2 weeks, then to 20mg from then onwards. So i will see if it helps me at all! Ill let you know!!!!! :shock:

Colin1

Jane what DD says is right i was one of the people it never worked for but you have to be strong and give it a go. If it doesent work there are other meds you can try. You must try to be positive tell yourself its going to work. Alot of our type of illness effects us mentaly ( when i say Us im not included ) thats because of the constant pain and worry of the illness. I know it difficukt and i hate saying keep your chin and think positive but alas thats what i'm going to tell you.
Take Care
Colin

RoseEllen

Hi, I am due to start Humira, well, when the delivery arrives!!!

I have both RA and OA with fibromyalgia, my rheumatologist says that if the Humira doesnt work its due to my pain being the fibro huh??!!!

So I assume that he wont try anything else after this.

I have had OA for around 14 years, so by the looks of it, my ankle pain and knee pain are not due to RA.

I really was hoping it would work as I'm really struggling with work right now, I am a nanny and care for two little boys for 9 hours a day three days per week. Also one more little one on two days, so its very physical.

Ah well, keep taking the pain pills and hope for the best

:? :? :?
Take care all x

tillytop

It's so frustrating isn't it that no-one can tell us for certain whether these drugs will work for us and it alarms me that there are still rheumatologists out there who promise miracles for anyone who takes them! And those like Rosellen's who seem to suggest that if the Humira doesn't work, then the pain is caused by something else!

That said, I do want to say to you EmsJane and to Rosellen not to lose hope completely on the basis of having had arthritis for a long time. I had aggressive RA for 7 years and had pretty much run out of drug options by the time the first biologics became available on the NHS. But the first one I had, Infliximab, was for me, literally a miracle, and gave me five, virtually arthritis free years. I am on my third biologic now and although things have never again been as good as with the Infliximab, they are still much, much better than than would have been without them.

I know that my situation is different from both of yours in that I did have early help with my RA and I am fortunate in that I am not also coping with OA but no-one really knows how well these drugs will work until they try. So my best advice - and my own approach these days, it to go into any new drug with an open mind, a little hope and see what happens.

Really good luck to both of you - and please do keep us posted.

Tillyxxx

emsjane

Thank you everyone for all your supportive words! I am prepared to give all the drugs a go, but i am also aware that they may not make any difference, as, i suppose, the damage to my joints has already been done and therefore i will still get the pain. I just hope the drugs stop the disease from getting any worse!

RoseEllen, i don't know how you can do a Nanny job! I had to give up a part time TA job in a primary school because it was too much!! You must be exhausted at the end of each day and in a lot of pain!!

LondonLass

Hi, I have been on humira for a while and it has really stopped the progression of my PsA, completely cleared the Psoriasis to the extent that my finger nails have reattached themselves after 10 years!

However, I have become completely allergic (have to carry an epipen) to all soft unpasteurised cheeses and pine nuts! The allergy specialist believes that it is probably the combination of the diclofenic sodium and humira thats to blame.

I too am a vegetarian although, now, seriously, considering veganism.

dreamdaisy

I'm the opposite to Londonlass, the advent of humira meant that I could find out first-hand what all those treats were like, the ones I missed as a child. I was chronically intolerant to all dairy and fruit (indulging led to appalling skin splits and/or boils) and my summers were wrecked with asthma thanks to the planetary explosion of grasses, flowers and tree pollens. My conclusions after all the experimentation is that soggy cereal is disgusting (I was used to eating it dry and still will!), fruit is hellishly unreliable in texture and taste (looks gorgoeus, is either rock solid or a mush, tastes vary from bland to very acidic so just what is the point? I will stick to my raw veggies!) and that buying cut flowers to decorate the house is a waste of money as they die anyway. And I still won't garden as raising and caring for one's enemy is a dangerous past-time. DD

tkachev

Hi


Humira worked very well for me and I have read a few posters who have had positive results (Scorpio and Fireman Phil spring to mind). I have been on it for 3 and a half years.

It is definately worth a try.




I also had a lot of damage to my joints by a delayed diagnosis and also have OA so its not a picnic but that awful all over pain had gone. I also get side effects of chest infections so often have to miss the injection and/or Methotrexate.

Hope it all goes well
Elizabeth

ps. I also eat pate and have not had any problems.