Humira usage and concerns

[Trithan]

Hello all, I am newly registered to the forum, but have been viewing it for some time. I have suffered from Crohns since approx 2005, off and on flare ups. Seemed to get worse as years progressed. I went through all the tests for years and was always told that I am fine. Was finally diagnosed with Crohns/colitis in 2011. Was on various meds to see what would work for me.........asacol, buscopan, azathriopine, pentasa, flagyl, prednisone......etc. nothing worked except for prednisone, but when I tapered off them, my symptoms would come back. I was then told that I am steroid dependant. Due to prednisone not being to nice on the body for long term use, I was given an option for Remicade or Humira. Since I lie an active lifestyle I chose Humira so I an take in the comfort of my own home. My first injections were 4 in one day. Two weeks later, 2 shots. Then down to 1 shot every2 weeks. At the time of injection i was also suffering from migratory arthritis.........due to my flare ups. Felt like I was 80yrs old. The next day after my injections all of my arthritis pains went away. My Crohns symptoms slowly want away over the course of a month. About 4mths later I started getting rashes on my feet, palms, wrists and patches on my legs. Specialists claim it is psoriasis. Humira is supposed to cure psoriasis, but found out that a small percentage gets psoriasis. I feel pretty good on Humira and can almost eat normally. My concern is that I am 34 yrs old and am supposed to be on it for life. I have recently reviewed a lot of stories and problems with Humira and looking for answers on long term effects. I want to find a natural path for my Crohns and not a pharmaceutical one. I am a huge supporter of medical marijuana and will most likely resort to smoking and making oils. I have had success with smoking in the past but would like to try ingesting oils.

 

[Angrybird]

Hello and welcome to the forum

I do not have any experience myself with Humira so could not say about the short or long term effects of this, we do have a treatment section though that is definetly worth checking out so you can have a look at our Humira sub forum but also there is a thread there regarding medical marijuana: http://www.crohnsforum.com/forumdisplay.php?f=16. We do also have a diet and sups forum that you should have a look at to get further information in this area: http://www.crohnsforum.com/forumdisplay.php?f=17. I am also tagging Gianni as I know he has some helpful info in this area as well, out of interest what are the docs suggesting beings you are having problems with the Humira?

AB
xx

 

[Trithan]

Thanks for the info. I will check out the other forums as well. The docs havent suggested any altenative meds besides Remicade. But after reading all the not so lovely preblems with both Humira and Remicade, it has made me rethink my approach. I like your advice on supplements and what I need to start doing is eating properly/healthy. Like I said, the Humira did work very well, but at what cost down the road. I thin k it is worth suffering a bit and managing my symptoms on my own then to get cancer or something in a few years from Pharmacuetical drugs.

 

[Angrybird]

One thing I would aways advise is if you do decide to stop meds that you keep your GI in the loop and have regular checks ups to monitor disease activity, even when feeling well it is best to make sure things are not bubbling away inside going unnoticed.

 

[Chally2]

Hi Trithan
I have been on Humira for just over two years now, it has had a great effect on my Crohns and flare ups went from every week to maybe one every other month and even that was nothing to talk about unfortunately I also have the rashes on my hands and feet and I believe it is a side effect of the Humira I put a cream called ichthammol on it, it smells like engine oil but works. The rashes seem to come back now and then but they are not really a problem I also have severe joint pain but unfortunately the Humira hasn't had an effect on that. Hope that info was useful.

 

[Gianni]

Hey Trithan.

I was on Humira for a year and I had many of the concerns that you did. I could just feel that while the humira ket my system at bay, my body didn't like it. I came down with pneumonia three times in just one year while on Humira. While longterm useage of the drug is scary and so is the realization that the drug hasn't been around very long and that we the patients are essentially a long term study, you must realize that the people posting their reactions and horror stories on these drugs are the only ones on the blogs telling their story. The people who have had great success on these drugs are living their lives and not telling their success stories on the internet, so these blogs don't always give the best unbiased look on things.

I decided to discontinue Humira as I felt that my body deserved better. I took a natural approach through diet and delved into the wonderful world of nutrition. I believe that nutrition is much more powerful than we originally thought. I am now a vegan whom includes a ton of vegetables as I think vegetables hold great healing benefits. One thing that has tremendously benefitted me was Juicing. Juicing is the extraction of pulp from a fruit of vegetable and attaining natural, nutrient and mineral dense juice. I believe juicing can be truly healing for Crohn's

You can read about why I think juicing is so great for Crohnies here: http://www.crohnsforum.com/showthread.php?t=41838

And you can take a gander at some of my juicing recipes here: http://www.crohnsforum.com/showthread.php?t=41839

I would love to hear about your diet specifics when you have the chance, so please feel free to post that here or in the diet fitness and supplement forum when you have the chance.

As for medical marijuana, I did initially try the MM route when I was first diagnosed. I received the medical marijuana card but after a few months I decided it was effecting my schoolwork and felt that it just wasn't for me. I know researchers are developing a pill that would give you all the great benefits of MM without the actual high which is something I am extremely interested in as I believe MM is very healing.

Oh and Welcome to the Forum!

Gianni

 

[Trithan]

Thanks all for the great feedback. Good point 'Angrybird,' I will keep my GI in the loop!! Sorry to hear about the joint pains 'Chally2.' That was one thing that Humira did amazing for me. I could barely get around at times, especially when the inflamation in my body was severe, it would put pressure on my ciatic nerve..........oh wow!! Felt like someone was stabbing me in my ass cheek and lower back everytime I moved. It hurt so bad, at times I just had to laugh!!! LOL. I love the juicing ideas 'Gianni." I had a friend tell me about juicing as well and will definetely look into it. I am happy with the Humira, but as Gianni nailed it.......we all are kind of the guinea pigs for what the effects will be. I noticed quite a bit of Lawsuits and Class Actions against Humira/Abbott going around. I agree and feel that my body deserves better. I may suffer down the road, but at lease I wont leave my children early. The MM that I was looking into was for the oils. Did some research on the 'Rick Simpson' ideas and would like to test it out. This way I wont be stoned from smoking it and can just pop a couple pills........we'll see.