Discussions that mention humira

Arthritis board


Hi all...:)
Well I went to my rheumy Appt. on Friday the 28th. And he said "yep you have RA" What a relief ! - Not that I have RA, but that I have the diagnosis. It's like a weight being lifted off my shoulders being able to finally know whats wrong with me, to cause all this pain. I'm sure some of you know what I'm talking about.:)
So... here's the med's he put me on... Humira - self injections - every other week. Hydroxychloroquine 200mg - take 2 once a day. Prednisone 5mg once a day - after I finish the intro pack. ( He said he was only going to have me on Prednisone until the Humira and Hydroxychloroquine kicks in. Which he says in about 2 months. ) And he wants me to stay on the Ketoprofen 75mg - 2 times a day.
Does all this sound about right to you all ? I told him I really didn't want to take the Prednisone, because I didn't want to gain a lot of weight, but he said not to worry, just eat more carrot sticks and less buttered popcorn and pizza and I'd be fine. He said it wasn't the drug that make you gain weight. It's what you eat. It makes you more hungry. He also said to watch my salt intake.
It's amazing what those drugs have done for me in just 2 days ! Almost no pain. And I was even able to finally sleep for more than 2 hours last night. I got 6 hours ! Now I know this is probly just temporary and that these drugs will probly stop working for me after awhile, but for now it feels good. Compaired to the way I was... anything is better.
Have any of you had any experience with any of these med's ? If so I'd like to hear your comments. Or for that matter any comments on anything I've had to say. :) That's why I'm writing here... to share with others and to get feedback.
Bye for now...
Hi, yes I know all too well what a relief it is to finally have a diagnosis for something. I got diagnosed with my spine problems right away after having an MRI. But I still have other inflammatory issues and joint pains, etc that I thought were diagnosed, but now it seems not. Lupus was suspected for me about 18 yrs ago due to facial rash & the dermatologist asked all sorts of other questions like other symptoms I might have been having, which I was. He suspected lupus, but I couldnt really follow up due to no health insurance. So over the years I've had flare ups of joint pains, swelling, rashes, visual problems, headaches, hives, angiodaema, muscle pains, major fatigue, etc..
In 2004 I finally got health insurance thru a job and finally saw a rheumy for the first time. He gave me Bextra first , but a few weeks later it was taken off the market. And of course the Bextra was working pretty good. He had me try Mobic & relafen (both of which cause my eyes to swell shut), then I went down fast. I got so bad he finally put me on Prednisone. I took 40mg per day for about 1 or 2 months, then tapered off slowly over 8 months. I tell you this Prednisone is like a miracle drug, I hadnt felt that good in years! Every symptom disappeared, including in areas I didnt realize were bothering me. I did gain some weight, which was mostly bloat and moon face...but I was able to exercise again so I guess that helped to keep me from gaining too much. He also had me start Plaquenil (200mg twice per day) at the same time. Plaquenil takes many months to build up in your system so the doc gave this at the same time so that it would be built up enough when the steroids were stopped. So I've been on the same dose of Plaquenil for several years now without any side effects or anything. It seemed to keep my flares more under control...either they were less severe or didnt last as long. Sorry I do not have any experience with Humira but Im sure others will post about that.

One strange thing...I didnt gain too much weight from the oral prednisone, but I did gain alot (and massive moon face) from all the spinal epidural steroid injections i've had. But then again I had developed severe spine problems so therefore could not exercise at all. I also had one ankle act up on me again. However, I did watch what I ate (I seem to completely lose my appetite while on any steroids)..so I ate even less than before and that did not prevent me from gaining steroid weight and bloat. The good thing is, the steroid weight will gradually come off once the med is stopped. For me it takes a while (5 to 6 months) but at least it does go away.

Again, I'm really happy that you are being treated & that the treatments are working for you. I hope it stays that way and you are able to get back to a more normal life!
Hi Davidzzz
Am very pleased that things seem to be getting sorted out for you, it is so very hard to come to terms with having RA as things that we could all do once seem so difficult such as bathing, dressing, driving etc. I have only recently been dx but have joined a few societies where you can discuss with others about drugs/support etc they have used which really helps you to make decisions as to what to do. It's a nice way of meeting others as you find there are people who live near you who are in the same boat and can possibly meet up! In england you are offered the old style drugs first such as MTX etc before you can try the newish ones such as humira, i guess that's the NHS system for ya, all comes down to budgets etc.!Good luck and keep us posted of your progress.
wenXXX.
Hello, message for Wen,

I have read your threads and wanted to talk to you as you live in England. I live in England as well and appreciate the NHS very much when reading how people in other countries have to cope with getting drugs etc.. I have been on all the DMARDS, sulph, mtx and leflunomide and am now on daily dose oral steroids. You mentioned that you were on steroids and plaquenil, I havent heard of plaquenil or been offered it, do you feel its working well? I have been trying to get the anti tnf drugs - humira or remicaide but when I was assessed my arthritis was quiet and only a few joints were hurting and didnt qualify for it!! I am back to rheumatologist in November to see where I go from here. I have psoriatic arthritis and have had it for 4 years, I have now had to give up work and a times use a wheelchair if my toes ankles and knees hurt too much. Are you still working? You mentioned meeting up with other sufferers do you know a website that informs of these organisations?

Regards and best wishes,
Ronnie
Thank you all for all the comments... keep them coming. It's good to talk about it.
As for me ? I'm doing o.k. Some of my pain is coming back due to ( I think ) the lower doses of Prednisone I'm now taken. My first six days of it came in a blister pack. You take 6 the first day, 5 the next, 4 the next and so on until you get to one a day. and thats were I'm at now. After the 4 a day is when the pain came back. My Dr. also has me on Plaquenil ( Hydroxychloroquine ) 400mg once a day. I've also only have had one shot of Humira so far. ( I didn't like giving myself the shot ! :( ) The next shot I have to give myself is Oct. 12 - it's every two weeks. Also taken Ketoprofen 75mg twice a day for pain. So folks I'm just going day by day and waiting to see if all this works. I don't go back to see my rheumey until Nov 28th. Oh yea... for got to add that I'm not really having any side effects from any of the drugs except a couple of times some light headedness and some pounding in the heart, that went away shortly after it started.
Bye for now you all... Try and stay positive - it helps...
Hello Davidzzzz
Humira has received very positive reviews, some call it the wonder cure! Goodluck and best wishes, keep us posted of progress.

Hello Becauseofhim
Try not to feel so sad and lonely as you always have people on here that are listening and chatting to you. Am sure your doctor could help and there must be local/national organisations with in your own country/town to help with specific illnesses or even counselling services. Takecare.

Hello Ronnnie
Sorry to hear you've had bad day, every day something on me is swollen or unuseable, that's the joy of having RA (great isnt it)! Im from Suffolk, was in Bedforshire a while ago as went to Whipsnade animal park, a very nice place. Do consider joining the organisations i mentioned as they really are very good and have all the latest up to date info on all types of arthritis. Am looking in to trying to have use of a hydropool as this is ment to really help with pain and overall well being, plus it enables you to meet others who are in similar situation as yourself. Do you attend anything like this?
wenXXX.
wenXXX.
Hi All
I'm sorta new to this board but just wanted to say that I have been on Humira a few months now, hubby injects me as my hands aren't strong enough. Wot a difference its making to mine and my hubby's life. I know its not a miracle cure but even if it only lasts for a few months I will be happy. I have had all drugs under the sun to help slow the progression of PA but no joy. I have had numerous ops on hands, fingers have been fused and some false joints, thumbs joints taken out and fused. Wrists are fusing on their own and well painful. The deformities in my feet have become unbearable now and so have to finally agree to an op - which I ain't looking forward to but hey ho, such is I guess. If anyone has had the Fowler's procedure please let me know.
I just wanted to say really that no matter wot people think, our NHS system is the best ever, after spending a year travelling to all parts of the world recently and seeing other countries medical side u cannot beat the UK. I know sometimes u gotta wait a while before things can get sorted but they get their eventually - as I am only 36yrs and the PA has got so much worse in the last year they decided to put me on the Humira, and as this is such an expensive drug and some can be on the waiting list for funding for ages I count myself extremely lucky.
Whoever has the opportunity to get this drug, its not very nice injecting the horrible solution in as it stings to hell and the area normally stays swollen, red and itchy for at least 3 days afterwards, its something really worth considering.
Its not that I am out of pain all the time but more that it has eased it considerably, unfortunately they didn't catch in time before the deformities happened but as I said before Hey Ho, theres people worse off in this world eh!
Would love to hear from anyone who mite know about this foot op (Fowler's procedure) and if anyone has had all joints in toes removed etc.
Hope to hear from you soon.
Keep smiling guys and don't let the **** get u down. :jester: