Remicade

[elsawind]

Hi, so glad I found this site!!
my husband has and aggresive form of WG, which is refractory to standard and intensified therapy.
Started Infliximab (Remicade) on Feb 24th and next week will have the third infusion.
I would like to know if anybody used this option and the results.
Thanks, and the best to everybody.

[Palmyra]

Hi Elsawind,
My daughter used Remicade for 3+ years, to treat Crohn's disease. It controlled her 'refractory' Crohn's very well with minimal side effects. It was a common experience within the Crohn's community for one to develope antibodies to the medication after awhile, making it no longer effective. Long story short, Humira (another TNF~alpha inhibitor) was utilized next, she then developed Weg. She is currently maintained with Rituximab.

Good luck to him, and I hope he gets a favorable result.

[elsawind]

That is encouraging. I hope he gets some sort of remission because this is a nightmare!
He tried Rituximab in May 09 and another set of infusions in Nov. 09 with Methotraxate, but it did not work.
Thanks a lot for your reply!
good luck to your daughter!

[drz]

That is encouraging. I hope he gets some sort of remission because this is a nightmare!
He tried Rituximab in May 09 and another set of infusions in Nov. 09 with Methotraxate, but it did not work.
Thanks a lot for your reply!
good luck to your daughter!

Hope it goes well. Keep us posted.

[DuaneHart]

I have been on Remicade since August '10 and have had very good luck with it. Wegs is in remission and Crohn's and Ulcerative Colitis are getting there. I have Remicade every 8 weeks, methotrexate injection weekly and prednisone daily. Hope it works out well for your husband!

[pberggren1]

Duane, did you try ctx or rtx or something else like Aza or mtx and they did not work and that is why you are on Remicade?

[Sangye]

Nice to hear from you, Duane. How's everything?

[DuaneHart]

They tried Imuran at first but I could not tolerate it so they started Remicade and things turned around. I'm down to 3mg pred, going down 1 mg every 4 weeks plus the mtx weekly. When I get off the pred then they will think about getting off the mtx.

[Sangye]

That's great! :w00t:

[pberggren1]

Duane, you must have had mild involvlement for them to start you off on mtx.

[drz]

They tried Imuran at first but I could not tolerate it so they started Remicade and things turned around. I'm down to 3mg pred, going down 1 mg every 4 weeks plus the mtx weekly. When I get off the pred then they will think about getting off the mtx.

That sounds like excellent progress and great plan. Glad things are going well for you!

[DuaneHart]

It was pretty mild involvement, but I was still sick. Any kind of Wegener's is no fun.

[elsawind]

Thank you very much for your info. My husband has another hurdle now, he has a cyst in his face close to the ear that appeared late Dec. and an aspiration biopsy found squamous cell carcinoma. MRI on sunday and next week the tumor will be review at a board of doctors at Kaiser Sunset. On top of everything he still has bone showing on his forehead due to a sebaceous and squamous cell carcinoma that was removed in Oct. 2010 using the Mohs method. Now I understand when some make reference to "Midline destructive syndrome".
Thanks for all the good wishes!

[onatreetop]

I just had my third iv infusion last thursday. But ...........I was informed it would be my last for sometime. I have to wait 4 weeks then start back on cytx again. have been on methotrxate liquid orally for 12 weeks. swtiched from oral tablet. Lungs are not responding to the treatment so its time to go with heavier meds. this will be my second round with ctyx. oral tabs. Was hoping that the remicade would take care of the swelling with the methotrexate but it hasnt. My swelling is in my hands. have had cysts removed before but swelling came back. Hope your husband finds his cocktail mix soon. I am working on mine again.

[elsawind]

The cysts that you had removed, where they benign? My husband was on Ctyx for 6 month once and for 4 months at another time, but had to be stopped when skin cancer started to show in different places, protein in the urine, etc. At that time were "just" basal cells. Now it is the heavy stuff, sebaceous and squamous on the forehead and now on the side of his face.
Unfortunately, nothing works for him, so I’m trying different approaches. I read http://hubpages.com/hub/How-I-Cured-Stage-4-Cancer-in-Two-Weeks-For-Less-Than-The-Cost-Of-A-Night-At-The-Movies (http://hubpages.com/hub/How-I-Cured-Stage-4-Cancer-in-Two-Weeks-For-Less-Than-The-Cost-Of-A-Night-At-The-Movies)
We started to do that with the Habanero peppers, there is a study done at UCLA were researchers found that the heat of habanero peppers shrank tumors by 80%, we take three apricot kernels with every meal, lots of veg. no process foods, we even started with the black (or fermented) garlic that South Koreans are so fond of. Flax seed, chia seed, cottage cheese with flax seed oil, ginger etc.; I really believe that some of these potions are keeping him alive.
Off to do an MRI. Good luck to you and let us know about your progress.

[onatreetop]

yes. They called them rare white cell masses on the biopsy. The surg. did help relieve the pain but that was most likely due to nerve damage during the surg. which I am greatful for. The pain is no where near what it was before the removel. they went in for one cyst and found three more which they removed also.
Have they tried graphing with the man made mesh? my mother had a wound that became infected.They tried three times to do a skin graph they wouldnt take. then they used the man made mesh and part of it took then they did it a few more times and finally the whole was covered.It took almost a whole year.But was worth it. my mother is only 64 now but has many medical issues but no wegeners.
hope the mri goes well. i can nap in them now. I also know most of the techsthat work there,all of them.

[elsawind]

he has an appointment with the surgeon on Thursday, I will ask him about the man made mesh. On the forehead the plastic surgeon did not go with the graph because he has many open sores and did not want to create another problem. The vasculitis on the skin presents like boils in any part of the body, some burst, and takes for ever to heal, some others go away in the same way they came. But actually that is nothing compare with this WG attacks in the lungs, the perforated septum, the throat........ what a nnightmare of a disease!
On Wednesday have the app. with the oncologist we will see the results of today's MRI. I'll post the results.

[onatreetop]

I hope all went well. It took a few surgs. but it did take for my mom. Hers was on the side of her calf. Started as a thorn wound in the garden. It soon was a gaping whole the size of a silver dollar. She is diabetic also so that didnt help either. Sores are no good. mine seem to take forever to heal and always scare. No matter how big or small. I have the red freckle type rash on my arms and legs. And when the hot flashes come even redder. I also have a folding fan with me at all times. please let us no when you can. Hoping for amazing results.