Re: Remicade issues!

[Guest guest]

Thank you for all the great info.tiodaat@... wrote: This is a note that I wrote to Kim re: Remicade. I hope it clears up some of your questions and concerns. I know that for me--it has been an answer to many of my sarc problems. I've been able to be off my oxygen during the days since I've been getting regular infusions!As far as the Remicade-- Kim, this is wonderful. I can tell you that I do so much better on it. My thought processes are much, much better--and so is the bone pain, joint and ligament pain, as well as the sarcoid arthritis. Over the last 2 1/2 weeks, I was really struggling mentally to do everyday tasks. I got my infusion last Friday, and within hours was more mentally alert. By Monday, I had

gotten about 3 days of badly needed sleep-- and my body pains are greatly reduced.Now, you should be given oral or IV Benadryl with the infusion (or prior to) and if needed, My script reads:May premedicate or treat with Acetomenophen 1000 mg as needed.Beadryl 25-50 mg oral or IV if needed.Zofran 4-8 mg IV if needed.Decadron 8 mg IV if needed.The dose is 5mg/kg.You should get the first infusion, then 2 wks later a 2nd infusion, then 4 wks later a 3rd infusion. Then they will try to have you go 8 wks between infusions. I lasted 6 wks--then it wore off. So they backed it down to 6 wks--and I started lasting only about 4 1/2 wks before the mental fog was coming back, along with the lymph swelling and pain, and the inside the bone pain. so as of last week--I'm at 4 wk intervals now. This should make it so that I don't have my immune system saying that it's free to run amuck--and get that little unprotected boost

and start to attack it's imaginary problems. Which is what was happening as we went out 6-8 weeks. So, that will take time to figure out what each of you need-- and customize it to your specific needs. Now, Remicade MUST be given with either Methotrexate, or another immune supressant. That is because you can and will build antibodies that attack the proteins that make Remicade work. So, you'll need to make sure that they are coordinating that. If you had a problem with MTX, then prednisone or Cellcept or whatever (they can call Remicade's helpline to get other options that will work). Also, you should be on Folic Acid--1mg daily. This is extremely important--as you can develop pernicious anemia from the MTX or other immune supressants. Get the pharmacist to prescribe it--that way it's for sure that you are getting the dosage you'll need. (Folic Acid over the counter is not always dependable). As what

to expect:You may have a raise or drop in blood pressure during the infusion. You may have a metallic taste (I thought I was sucking on a lead pipe--that is no longer a problem). If you feel like you're going to barf--let someone know. One of those drugs above helps with nausea. (That has never been a problem for me.)If you have an allergy to the medication--the Benadryl will help and would get you out of crisis if it was a severe allergic reaction.You will not lose your hair. You will be tired--although initially you'll feel energized, because you're hydrated! Don't go shopping afterwards--it'll hit you while you're trying to shop--and you'll want to go to sleep--immediately. (Experienced this--LOL!)Eat a decent meal before the infusion--it will help protect against the nausea. I seem to want yogurt following my infusion--frozen is best. (Personal choice). Drink plenty of fluids--your

liver needs the extra help with all the meds we're on--and it makes getting the IV into a vein so much easier. Drink plenty of fluids afterwards--it'll help with any toxicity, and you'll feel so much better. If tea's your thing--use the Milk Thistle tea, Peppermint or Chamomile. These are the easiet on the liver and stomach. Always use a decaf tea (herbals).You may find you have alot of energy for a day or two--then you're body is going to tell you that you're "fighting something." That "something" is the fact the medication is supressing your immune system--so you feel tired. Listen to your body at that time--and give it that extra rest. We must have the rest to heal, So listen LISTEN to what your body tells you it needs. Kim, we had talked about malnutrition--and dehydration many times over. I know you are having an exceptionally difficult time--but I can't stress enough the importance of feeding

yourself. Even if it is fruit and vegetable juices (diabetics need more vegetable juice to keep the blood sugar down.) Use common sense with your diet, and you'll find yourself feeling so much better. I'm a firm believer in the Remicade. After the first infusion--my hand distortion of my fingers ended--my thumbs were able to straighten back out, and work like they should. My inside the bone pain was gone almost immediately, and my lymph nodes settled down tremendously after the 3rd infusion, and keep getting better with each infusion. If the infusions don't last out 8 weeks, tell your MD's. They can adjust the infusions so that you don't have the immune system attack between infusions. Don't play the stoic patient and suffer-- it's not necessary. Tell them what is happening so they can best help you. If for some reason Remicade doesn't work for you--both Enbrel and Humira have shown to work

well. Some people can tolerate these drugs easier. So don't give up hope if this isn't the perfect answer. (I believe you'll all do fine!)With loving compassion,TracieNS Co-owner/moderator

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[Guest guest]

Thanks for sending this, Tracie.. It certainly answers a lot of

questions.......and it really helps coming from someone who is

going through it right now.........

Thanks again so much....

Darlene

NS Co-Owner/Moderator

> This is a note that I wrote to Kim re: Remicade. I hope it clears up

> some

> of your questions and concerns. I know that for me--it has been an answer

> to

> many of my sarc problems. > With loving compassion,

> Tracie

> NS Co-owner/moderator

>

>

>