Questions about Remicade (Infliximab) infusion

[Guest guest]

Dear Friends,

In a couple of weeks I get started with a new trial treatment for my

neurosarcoidosis in the Netherlands.

It is of course Infliximab.

I know that a few of you have experiences with this immunotherapy.

What can I expect of this new medication?

Side effects? Nausea? I'm curious for all details.

For my it's the last opportunity for relief. I have, may be as you

know, neurosarcoidosis for 6 years now and the small fiber neuropathy

has diminished 60% of my thin nerves (found by the skin biopty).

A big hug from the Netherlands,

Yvonne

p.s. I have already read the documents in the files folder of this

group and hope to hear some personal experiences.

[Guest guest]

Yvonne,

I've been on the Remicade for almost 2 yrs now. I did find that I had to up the dosage to 7mg/kg and infuse each 28 days. It has helped so much with the sarcoid induced arthritis issues, along with some of the dementia issues.

It is important that they use it with Methotrexate preferably (it was developed to work with MTX) but if you can't take that, small dose prednisone or Imuran will help so that you don't build a tolerance against the Remicade.

I find that by the time I'm done with the infusion (2 hrs) that I have some energy. However, it is not for real! so don't try to go grocery shopping or to the mall. You'll get there-- but you will find that within the next hour or two, you will drop-- and sleep is gonna be needed.

The longer I stay on it, I'm realizing that it takes a 4-5 days to recover from my infusion, and then I'm good to go for the next 20 days or so! I can tell when it's wearing off (basically at day 24/28) and my lymphnodes swell, and get painful, as well as my fingers feeling too short-- that's the arthritis part for me. It has helped so very much with the spine pain-- as well as the hip pain.

I have found that for me, the small nerve fibre neuropathy responds best to a diet of no refined sugars, and plenty of fluids, along with my MSM! It really really helps in the middle of night when I wake up and that neuropathy is in full fire-- I take a tbsp of MSM in 1/4 cup of water, then drink a glass a water-- and within 10 min the fire is gone.

You will want the MD's to make sure to do a CBC and a LFT monthly-- so that any signs of lymphoma, leukemia or liver problems are caught immediately-- and that way you won't develop these conditions.

Make sure you take the Folic Acid-- to avoid pernicious anemia. Also, I use the Milk Thistle capsules, and as long as I'm not coming down with anything, my liver function is better now that it was prior to the Remicade!

Good luck with this, you'll get the first infusion, then 2 wks later a 2nd, then they will go out 6 more weeks for a 3rd, then each 6-8 wks. If you don't last that long without flares between infusions, make sure you tell the MD-- because it will need to be taylored to what you need.

Take care,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Dear Tracie,Thanks for your own story about remicade.I will ask my neurologist to give my MTX, or the Imuran, I didn't know that these are against the Remicade intolerance. Good to hear.Also to take Folic Acid. I had to look up on the internet what you mean with Milk Thistle capsules, they don't sell them in the Netherlands but a saw already some internetshops were I can buy them.

I'll keep you posted !Thanks a lot and of course a big hug from the Netherlands,Yvonne

[Guest guest]

Yvonne,

The reason that you have to have MTX or Imuran with the Remicade is that you can develop antibodies against the Remicade. It would then make the Remicade useless.

I was looking for the word--antibodies that is, when I sent you the email the other day, and it was escaping me. NS for sure!

I'm sure you'll do fine, for those of us that can tolerate the Remicade it has been a good choice. For those with allergies to it-- it has been nasty.

I'm visualizing you being one that can handle it!

Hugs back,

Tracie************************************** See what's free at http://www.aol.com.