Humira --- the promise of remission?

[wmonique2]

Hello everybody,

Has anyone tried Humira? For those of us who are difficult to treat because of auto-immunity, can Humira be the answer?

This drug doesn't only appease inflammation like entocort or mesalamine do, it actually heals the gut.


Monique

[jmayk8]

I *think* Joe has been on Humira but, I'm not positive. I'll wait to see if he responds.
My Dr has always said that we can try that as a last resort since prednisone doesn't work for me. I think i'd be too nervous to try it with all the side effects.

[tex]

I believe that Joe is using Imuran, which is an older immune system suppressant, not an anti-TNF drug. He's using it to treat Crohn's disease.

We have a couple of members who used Humira and/or one of the other anti-TNF drugs to treat psoriatic arthritis. It seemed to make their MC worse, especially right after each treatment (when it should have shown the most benefits).

Tex

[wmonique2]

Thanks, Tex. I was wondering how the biologic therapy can help since it works differently than other therapies. I went to see my GP and mentioned how I am not seeing any healing in two years considering everything I am doing. His answer was: probably because you have diabetes.

BTW, I mentioned that some folks manage to control their symptoms with diet and an anti-histamine. I explained the mast cell issue I have and how an H-1 receptor anti-histamine can work. He asked me how did I know that I have mastocytosis and when I explained he just nodded his head in disbelief. Then he said, That's pretty good. I went on to explain that people on this board are medical detectives and he was just awed. Then he said, You guys own this disease, you know it better than anybody else.

Anyway, he said he'll try the therapy for the people he has and asked for this website. Anyway, here's a dude that's open minded! Not an imbecile like some of the GI docs!

Monique

[Nettierud]

I take an anti-TNF drug- Enbrel shots for my psoriatic arthritis. I have been on it for 3 years and still came down with MC. I also think that it makes the condition worse and noticed minor flares the day after my shot until I cut back the dosage drastically and started to have joint pain again. Makes me wonder if the body sees the inflammation in the joints as it's first priority to send antibodies to and once the joints aren't so inflamed then the gut becomes the focus. So in other words if my joints are a little swollen then my gut seems quiet.

[tex]

Wow Monique!

You have an awesome GI specialist!

Thanks for making my day.

Love,
Tex

[wmonique2]

Tex,

De nada

Monique

[tex]

I take an anti-TNF drug- Enbrel shots for my psoriatic arthritis. I have been on it for 3 years and still came down with MC.

That's a very profound observation, and extremely strong evidence that anti-TNF drugs are contraindicated for MC. If an anti-TNF drug can't even prevent the development of MC, how could it possibly be an effective way to control it?

Your theory may be right on target, because that's basically the way that helminth therapy works to prevent autoimmune symptoms (by directing the immune system's attention elsewhere). It's pretty clear (IMO) that the immune system definitely has priorities, and it also has a hierarchy for the way it selects which issues it will focus on.

Thanks for posting that information.

Tex

[wmonique2]

Tex,

Your theory begs the question. Is MC an auto-immune disease or not? And could it be possible that it is for some and not for others?

Monique

[tex]

Monique,

I'm not sure how to answer those questions, because according to my theory, virtually none of the syndromes that are categorized as "autoimmune" actually meet the definition of an "autoimmune" disease, because many/most of them can be resolved by (or at least be shown to respond to) the removal of one or more exogenous antigens from the diet. IMO, a true AI disease should not be capable of being resolved by the removal of an exogenous antigen in the diet, because that proves by definition that it was not actually an autoimmune disease in the first place, but merely a normal immune system response to an external antigen.

MC falls in to the same category as most of the other diseases that are classified as "autoimmune". IOW, if one chooses to refer to them as autoimmune, then MC would also meet the same standard.

And since AI versions and non-AI versions of many diseases exist (at least according to conventional medical definition), then it is almost certain that AI versions and non-AI versions of MC also exist. Of course this requires that we ignore my theory, and pretend that AI diseases actually exist.

Tex

[Joefnh]

Hello Jenny, Tex and Monique. Jenny your right...sort of, I had tried swtiching to Humira from Imuran last Autumn, as Humira would address the Anklyosing Spondylitis (AS) and Crohns (unknown for MC) where the Imuran treats the Crohns and MC but not the AS.

I had tried switching over for several months but had significant GI issues, so it was decided to switch back. It's not a good idea to use both meds as the level of suppression would be extreme. Now that I have the Myasthenia Gravis to deal with which also does not respond to Humira the puzzle gets a little tougher to deal with. As I have been getting regular steroid injections into the spine this past year for pain management with the stenosis and osteoporosis, the belief is that the steroids will keep the AS in check. This whole issue of autoimmune management does need to be sorted out at some point. To that end Jenny I do go and see Dr. Yost again to try and work out a long term plan.

So the plan for now is to stay with and actually increase the Imuran to the upper therapeutic limit to try and bring the MG under better control. To help with this, next week I will be going into the hospital for a 6 hour IVIG infusion each day, which will boost the immune system for a while until the Imuran dosage change has had a chance to take hold fully. Imuran really slowly nudges the immune system, the changes in dosage take several months to be realized and effective. Hopefully the IVIG will help the breathing issues that MG has brought on and overall give me better control?

Certainly as far as MC and Crohns go, Imuran works very well, I did not have good control of the GI issues with Humira.

[Lesley]

I have been thinking of you and wondering how you are doing.

Actually crossing everything that can safely be crossed for you.

[JFR]

Joe,

Sorry you are dealing with so much. Did you stop getting good results from the MG medicine you were taking? It must be hard to stay calm in the midst of so much. A friend once said that she tried to envision herself like a rock in a fast flowing stream. I have always found that image useful.

Thinking of you,
Jean

[tex]

Hi Joe,

Thanks for verifying the problem with the Anti-TNF drugs. I apologize for not following up on the MG treatment for my friend's wife, that we discussed previously. My friend wasn't at the board meeting, due to a kidney stone problem, and I missed the following meeting (which was held last week), because I had the flu. Hopefully we'll both be healthy enough to attend the next meeting, and I'll ask him about her treatment and her progress. I don't recall him mentioning any breathing problems before, but I'll ask about that, also.

I hope you will see some big benefits from your current treatment.

Tex

[wmonique2]

Hi Joe (and everybody else),

Thanks for responding to my post. Like others I've been wondering about you too.

When I get overwhelmed about juggling my two conditions, all I have to do is think about you and your four (Am I correct?) conditions...So you have plenty of solidarity here.

Take care,

Monique