Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Weaning off the Humira =)

Hey, I've mention in several post that I'm going to be weaning off the Humira, so here goes. These are my first results after dragging the dosage of the Humira from once every 2 weeks to once every 3 weeks.

I'm posting this out of responsibility I guess, not here to prove anything. I've acknowledge the fact that this treatment plan may not work for everybody. However I would like to share this experience with most of you here. It would be at your best interest to consult your own rheumy on your individual treatment plan.

If anyone is wondering why the results look so folded its because my stupid scanner wouldn't let me scan 2 pages so I had to actually fold the second page and merge it with the 1st =/.

This was the latest result of my blood test before the new treatment plan. I was on humira once ever 2 weeks for close to 8 months ( started on mid september last year).


http://img59.imageshack.us/i/18feb.jpg/

And this is my FIRST results after doing the once every 3 weeks(I have on this for 6 weeks going on my 7th). (yes I've noticed the results was receive on aprils fools day but this isn't a joke....)

http://img266.imageshack.us/i/april01.jpg/

I'll be doing the once every 3 weeks for another 9 weeks and then my rheumy will decide where to go off from there. If all goes well, it'll be once every 4 weeks, then 5 weeks then so on and so forth, from what hes told me 8 weeks is the max. Tehn after that it'll probably be no more humira but that will all depend on my condition.

I'm praying really hard that I may be one of the lucky ones who go into perma remission cause my family doesn't have insurance and we've been paying out of our own pockets. My family has been really supportive of me thou.

Meanwhile, I'll try to to play my part by doing regular exercise and pick up from my life where I left off. I'm 25 this year and I had to stop school for slightly over a year cause of AS. Now that I'm back and feeling way better I'm going to continue where I left off. Wish me all the best, I'll post my results if or when I get to once ever 4 week dosage.

I did try the NSD for close to 2 weeks but gave up after that, not because I lost faith in the diet but mostly because it would be literally impossible to tell if the diet was working for me when the Anti-tnf was already doing so well.

However I'll be doing the LSD for now and if I need to, I'll use the NSD as my triump card. I figured it would be better to start off with the LSD first then do the NSD.

Current treatment plan are as follows : Humira once every 3 weeks, salazopyrin enteric coated (ssz depends on what coutnry you're from, they call it by different names) and Norgesic. No signs of inflammation or damage in spine (x-ray taken slightly more then a month ago) and slight signs of inflamamtion in my hips(x-ray taken just after i started on humira, should be reduced now, I can now bend my hips). Symptons of inflamamtion started in my knees but there no more swelling and it no longer hurts.

Hey,
I hope you continue to have good results! I have questions though, if you don't mind.

Will you continue the ssz and norgesic after weaning from Humira?
Were you taking these prior to Humira? if so, for how long?
Why are you weaning from Humira if you're having good results - is it the lack of insurance?
Were your inflammation markers high before starting the tnf?
Unless i'm reading incorrectly, your lymphocytes are elevated, does this mean anything?
Sorry for bombarding you with questions - You may have already explained some of this in other posts but my doctor wants me to go on tnf's and i'm on a fact-finding mission. She doesn't want me to go back on ssz, said it didn't seem to help me but I was only on it a month and some have said it takes 3 months. Is it better to be on ssz and tnf - maybe helping peripheral and spine?

thanks, Mary Cay

Will you continue the ssz and norgesic after weaning from Humira?

Yes I will still be on SSZ and Norgesic even after weaning off the humira, I'm currently on 6 tablets a day for SSZ and 2 tabs at night for Norgesic.

Were you taking these prior to Humira? if so, for how long?

Before I met my rheumy, I went to several doctors, First I went to a hospital but those specialist at the hospital were rather useless, they warded me for 1 night, and discharge me wtihout any medication and any diagnosis. They ahd like 1 specialist and 2 doctors to come look at me. They told me to come back 1 month later. Unsatisfied I decided to seek help from other doctors. I still remember this day, cause it was on my birthday that I was warded, 30 december 2008.

I went to family doctor who again did not diagnose me but merely treated me with celebrex to treat the inflamamtion. Again not satisfied, I went to an orthopedic who again treated me with celebrex and dexamethasone and omeprazole. Although the orthopedic did literally nothing for my AS, whaat he did was to list down a few key points why this "mysterious illness" was out of his erm...specialisation. funny thing was even after he listed why this was out of his specialisation
he still wanted me to go back to him, without referring me to another doc.

I had wasted about 5 months on those doctors and specialist and still non of them managed to daignose me or help me with the symptons.

So once again, I decided to seek help from else where on my own. It was by chance, or the grace of god ( what my dad believes) that we finally ran into my current rheumy. Within my first appointment, I was immediately asked to take a blood test and within a week, I was diagnose with seronegative spondylitis. I wasn't immediately diagnose to AS, it took a few months into seeing him to confirm that i had as.

I was then treat with Arcoxia, zimor caps ( for the stomach protecton against arcoxia), SSZ and norgesic. These treatment helped me but it wasn't effective enough. It did reduce my esr level from a 100 to 40 plus but could never really bring it to the "normal" rate. The orginal plan was to stick with SSZ for a couple of months to determine its efficiency. I was told of this "magic bullet" (humira, enbrel remicade) treatments but my rheumy didn't push me for it. He just wanted me to be aware of the avaliable options. So i was doing this treatment of SSZ, zmior caps, arcoxia and norgesic for close to 5 months. My inflammation in my knee had been greatly reduced and I was able to walk normally again but still with pain.

This was when it all changed, One fine day, I started to flare up again. My knees swelled to what it orignally was before meeting my rheumy. Prednisone was prescribed for 2 weeks but it did nothing for me and my knees literally ballooned, full of inflammation/liquid.

It was then that my family panicked and decided I needed to go for these "magic bullet" treatments. My dad actually went down to the rheumy office to had a little chat with the rheumy and when he got back, I was scheduled for the "magic bullet" injections next week. So this was how I came accross the Humira.

Why are you weaning from Humira if you're having good results - is it the lack of insurance?

Nope definately not. I don't have insurace to begin with. Every treatment I've had inclduing X-rays MRI, etc etc was all coming out of my familys pocket. Not trying to be boastful or anything but I happen to be one of the luckier ones born in a well to do family. My dad has actually pledge to support me financially with any forms of medical treatment for life.

I'm actually weaning of the Humira because I've been told its part of my medical treatment by my rheumy. Infact every single session I always ask him why I'm weaning off the humira and he has continously assured me it normal to wean off the humira. I don't have any signs of inflammation in my spine and I've been told humria actually works very well for people with inflammation in their knees and hips.

I then went to seek another opinion of my family doctor and again was told that this was part of the "normal" treatment. However it was made known by both (rheumy and family doctor) that there was a chance I might flare up again under this treatment. There have been some successful cases and not so successful cases.

Were your inflammation markers high before starting the tnf?

Yes they were over a 100+ but when on the SSZ, zimor caps, norgesic and arcoxia it redduced to around 40+. Within a week of taking the Humira I felt the inflammation on my knees going down. A month latter everything on my blood test was within the normal range. I've been told again by my rheumy that some people do not react to the TNFs as fast as I do.

Unless i'm reading incorrectly, your lymphocytes are elevated, does this mean anything?

I dont think so. The first report had elevated lymphocytes but the 2nd report was within the normal range. My rheumy actually reads my blood test and then puts his signature down everytime its out. That would explain why there are white patches on my both reports. Its is actually my rheumys signature, I had to edit them out. I'm sure if theres anything wrong with my results, my rheumy would contact me.

Sorry for bombarding you with questions - You may have already explained some of this in other posts but my doctor wants me to go on tnf's and i'm on a fact-finding mission. She doesn't want me to go back on ssz, said it didn't seem to help me but I was only on it a month and some have said it takes 3 months. Is it better to be on ssz and tnf - maybe helping peripheral and spine?

thanks, Mary Cay

I can't say much about your treatment plan, it would be best to leave it to the "specaliast". SSZ actually take months to work, wheather its efficient or not you can only tell through time, which is what we dont have when suffering with a degenerative illness... I'm suffering from AS of the peripheral joints but nothing on my spine.

When in doubt, its always best to ask for a 2nd or 3rd opinion. From what I've been reading, AS is actually an individual diesease. What works for others might no work for some.

My best advice is not to soley rely on your rheumy for everything. You have to play your part as well as a patient. Things like exercising, empowering yourself with knowledge of the illness etc etc. Your rheumy + yourself = a very powerful combination. If you wanted, you could even do dmards + tnf + NSD. SSZ isn't the only Dmard out there, there many different types. The thing is not to lose faith but to constantly try and not give up. I got "cheated" by so many doctors but I didnt give up. So don't give up whether you're on the NSD, or tnf treatment.

I'm currently doing SSZ, norgesic, Humira and LSD. I'm taking no prisoners...I will not let this stupid diesease consume me ever again...

Thanks so much! Your answers have been very helpful. I've been a bit confused by my rheum's insistence to not try SSZ again, i went off because of unusual,yet mild,symptoms - we were planning to start at lower dose and work up gradual but now she's wants to go the tnf route. I told her I didn't want to do mtx and she didn't push it.
Your doctor visits sound much like mine - noone could tell me anything was wrong, wrote prescriptions for celebrex (which i never filled) and would schedule me to come back - only to be seen by an assistant and to be poked a bit. My rheum was the only one to have any answers but I don't want to just follow everthing she wants me to do w/o knowing for sure its the best step. I do plan to get other opinions.

I've never heard of weaning off tnf's early in treatment when they're working. A few articles i've read say that symptoms come back once off, but maybe with the ssz combo its possible - I hope so for you, that would be awesome. Keep us posted.

best of luck for continued success as you wean, Mary Cay

HEY ALL!

Long time since I posted here. Its time to update my status.

I've been given the green light by my rheumy to go ahead with the once ever 4 weeks humira injection, but still on daily pills of ssz and norgesic.

Just a brief summery, I started last year,2009, mid september on one humira injection once every 2 weeks, then on apirl 8th 2010, I started the one humira injection once every 3 weeks.

Now its august 2010 and I'm doing the once every 4 weeks humira injection. My blood test has been constantly within the normal range for CRP and C reactive.

I'm keeping my fngers crossed, cause once every 4 weeks would be the "critical" period for weaning off the humira. I hope i'm one of the lucky onces who can wean off the dosage of humira but still keep its efficiency.

If all goes well, my rheumy will let me try once every 6 weeks humira injection and then once every 8 weeks. Once I pass the 8 weeks period, my rheumy would then literally cut me off the humira...then I would be considered "normal" again That doesn't mean I am cured of AS thou.

It would just mean my AS is in a dormant state until it decides or whatever triggers it off again.

We must remeber that people with HLA B27 does not always mean you have AS. There are people out there with HLA B27 but no AS.

Its been quite the journey I must say. When I started the once ever 3 weeks humira injection on april, I was rather worried because I was gradually rehabilating and getting my life in order again.

I enrolled myself back into school and the though of a weakened immunity system from humira literally scared the crap out of me. I was rather worried because I hadn't been in public for almost over a year since I was diagnosed with AS and I was afraid of catching unwanted bacteria or germs from human contact.

Initially I felt ill and caught the flu bugs from the people around me. But as time went by, I started getting sick less often and my health gradually improved.

Its been a long time since I fell sick(lets keep it that way) and I guess my immunity against bacteria is gradually improving. My body is adapting to its new environment

I also decided to lead a healtier and active life style which means less fatty oily food and daily swimming for at least 1h 30 minutes at night.

I found my overall fitness getting better and lean muscles have been developing all around my body. I also have less body fat as compared to when I was first diagnosed with AS. I should probably give some credit to the wheat protein I have been drinking right after my swims.

I'm very very satisfied with my body and trying to live my life to the fullest and enjoying every moment of it. Its been a long time since I felt this way.

Hopefully all goes well for me. Wish me luck guys.

Sad thing is I broke my scanner and I won't be posting my blood results for the once every 4 weeks.

However I'll update this thread again if i managed to get to the once every 6 weeks humira injection.

CYA people, I wish you guys all the very best in your fight against AS !!!

I have a small confession to make...sometimes...just sometimes...I forget I have AS and go crazy for a while

That is wonderful news. I hope that you can continue with the plan without any flares. If you succeed in this, you will be giving hope to a lot of fellow AS sufferers.
Donna