Total Frustration Humira / Methadrexate

[borderholic]

I have had Crohn's' since 1988. I was on Remicade in the late 90's which worked great. But I had 2 infusions that were given way to fast and had severe reactions.

I was then placed on Humira. never felt as good after I did when I was on the Remicade. I have been on Humira since 2010 and developed bad skin condition and have had several false positives for Lupus because of the Humira. Last year I had surgery for Colon cancer. I had a colonoscopy in February and it showed that the colon looked to be in good shape, no flare up.

I have been told I need to take Methotrexate along with my Humira to clear up the skin condition. After taking them weekly / bi-weekly I get really tired. I was told to take B-12 to try and increase my energy level.

This past week I was just "Out of it", really tired and had a hard time breathing. Turned out I have Pneumonia. I know my immune system will be depleted due to the meds, but I was also told that Pneumonia is always a big concern. I feel so claustrophobic because of the tightness in my chest and breathing is hard.

I am so frustrated. Is there any other alternative rather than taking these meds that compromise the immune system? Because of my reactions from the fast infusions of Remicade I was told I can't go back on that again.

What is the benefit of taking these meds if I get Pneumonia in May? What is it going to be like during the winter? Because of the cancer I was told I have to take something. I am not even sure if the Humira didn't cause the cancer.

Has anyone gone through or is going through the same thing?

 

[Clash]

Sorry I have no experience with this. My son(17) was on remicade and methotrexate for a couple of years. At this time he is only on methotrexate. We really haven't had the issues with frequent illness with him, in fact the rest of the household tends to catch more things than he does. He had no side effects with Remicade or methotrexate(along with daily pxed folic acid).

Maybe you could discuss your concerns with your GI and determine if there is another direction you could take with your treatment.

 

[Daisy123]

I had the pneumonia vaccine a few years ago because of having asthma and on immune suppressants. It is worth looking into. Sorry you are having such a difficult time.

 

[LodgeLady]

I had pneumonia after getting the flu while on Humira . I had both the flu shot and pneumonia shot. No question the Humira made me so immunosuppressed as my WBC's were 3! I have never been so sick in my life! So yes I agree with your question what good is it if you get sicker from the meds than from the disease!

 

[borderholic]

Because of the cancer, my GI wants me to stay on the Humira. If I stop taking it, then I am considered NON-COMPLIANT. Then getting all my follow up blood work, cat scan and colonoscopy's will be hard to schedule.

What is even more frustrating is, if the Humira is working. How do I get cancer? Did the Humira cause the Cancer? If there is no way to tell and it was the cause, what is it doing to me every time I inject?

I keep hearing about Marijuana and NY is close to passing this into law. Considering this helps for certain cancers and crohn's disease maybe this would be an alternative. I have never smoked a day in my life, but I am sure there are other ways to get it into the system.

This morning I have been coughing up blood and through my nose. I have had pneumonia for over 5 days now and breathing is difficult at best. Every time someone has a cold I run a risk of catching it and then turning into pneumonia? There really has to be a better alternative.

 

[Lisa]

Are you under a doctors' care for the pneumonia? Coughing up blood is not something to ignore. You need to be on medications asap if you are not already. I had a friend almost die last year from untreated pneumonia, by the time his wife brow beat him into going to the doctor he ended up very very sick.

As for cancer, anyone can get it, and those with IBD can have a greater chance of developing it, especially hte longer you have had the disease. It is a real risk for me too, as I have been diagnosed since about 1979.

From the information I have read and studied, the biologics don't necessarily make you immunosupppressed, rather they help to suppress what is probably an over active immune system - basically bringing it back down to a 'normal' level....

I had pneumonia once a few years ago, was pretty bad but was able to get over it and have not had a reoccurrance although I do occasionally get colds - but generally I am much HEALTHIER than the rest of my family.