Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Starting remicade

Thanks for checking in with me!

I am starting remicade in one week. I am excited and anxious both! I was wondering if anyone has any thoughts, reservations or advice to give me on this drug?

I truly value the opinions of everyone here so go ahead and hit me-good or bad I want to hear it! Thanks bunches

Hi there! We missed you! Glad to hear that you are gonna get help even if it is one week away! I'm soooooo very happy for you. You deserve this! I hope it makes a world of change for you in a positive way! If not I have 2 words! Dr. Gre*-#$ I'm tellin you sista! HOLA! Jk ill be there for you I promise and I'm all you need! I'm a smile and tears in one I'm like the medical groupie. Lol
This will be soo good! I can't wait for you to get some relief! OUT

just want to say Good Luck! and i hope it helps you as much as it has helped others here!

no way to know what will and won't help without at least trying it,
so glad you are doing that.

let us know how it goes,

Oh Girl this is wonderful...

You can pm me with ANY questions or thoughts or concerns, we have several here on the boards with Remicade.

On September 8th will go for my 7th Infusion.

I will say insurance wise it is a pain in the butt, at least for mine I had to have a current TB test, current x-rays, blood work and I guess everything that we had tried up till then. It took about 6 weks to get the ok from the insurance.

This is different for everyone but my treatments at least on explanation of benifits is about $4000.00 an infusion but then BCBS shield comes in and is lke ok with the discount, stuff we don't pay for blah, blah, blah so it is costing around $2500.00. So far I have not paid a penny BUT I have Medicare as secondary to pick up any balance so I have been blessed greatly in this or I wouldn't have been able to do it.

Now drawback wise is anything can happen, not trying to scare you just inform you. I know several people on here have had reactions bad enough to quit remicade, some have to take benadryl to combat the itching ect.. I can tell you that I have never had anything happen to me so far in the 6 treatments that I have had. Now that doesn't mean it couldn't sometime. Biggest complaint I have heard about like I said is maybe itching, I think there have been 1 or 2 on the board that have had major reactions maybe they will chime in.

Ok, Im sure you know all of this but the remicade works kind of by taming or turning off your immune system, it doesn't completely shut it off but enough to get your body to stop attacking itself. The med comes in 300, 400 and 500mgs or that kind of dosage and you can only do it thru infusion in your Drs. office or at the hospital.

It takes me about 4 hours to do my treatment, longer in the beginning because they will start the drip very slow to make sure you don't have a reaction. When getting mine they start at 50 dph (drips per hour) she turns the timer on for 15 minutes comes back to check on me if everything is ok then she bumps it up to 60 dph, same thing to 70 dph, then 80 dph then the next time as long as I am ok she ups it to 90 dph and leaves it there.

I have mine done in the Dr. office and they have to what they call Infusion rooms, very nice with couches, recliners, cable TV..I can bring my laptop, sleep do anything I want to do. If I need to go to the restroom I can unplug the drip and it will work for 30 minutes so I take me and my little IV pole to the bathroom and then back..lol

I have to do my infusion in the top of my hand as I have tiny veins and they can't fond a big one that won't roll but it does not hurt at all. After my treatment I have an apt with the Dr. and he does a complete exam as well as a complete conversation about how am I doing now compared to the last time. He goes over all the joints, muscles anything that could be wrong, asks me to tell him about ANY thing that has been going on.

I thought this was funny but so far after every treatment before I even leave the office I start sneezing BIG like 5 or 6 sneezes and my nose starts running I have this for about 24 hours and I think it is due to the remicade shutting down my natural histamines.

ok..it is almost 2 in the morning and my brain isn't working anymore..lol if you think of ANYTHING just let me know.

Don't be afraid Remicade has and is helping alot of people. Don't get discouraged if it doesn't for you.

Right now I am having some issues with it. I have been on the 300, the 400 and the next infusion is 500 because it isn't working as well as we had hoped but I am not giving up yet. You are also suppose to go like Infusion, 2 weeks, 4 weeks, 6 weeks and the 1 time every 6 weeks but so far 4 weeks is the furthest I can get but we are still working on it.

Keep us updated,

Hugs,

Lisa

Thank you Lisa, what a great explanation!! I do hope you get a bigger kick to your tx! Please please let me know how it goes-ok? I am going into it with great optimism and I have confidence that no matter what, there will always be something else if this doesn't work - so what the heck! My insurance is being great so far-its all about deductibles for me. Next year is when I get hit!haha

You are so kind-thx!

Thx Sue,

I will let you know how it goes! No guts no glory, huh!!!

Thx Sue,

I will let you know how it goes! No guts no glory, huh!!! Why is that we get so desperate, that we will strip our bodies of seemingly necessary stuff and fill it with foreign stuff just to get relief! Thank goodness for the brave previous victims on this site that give me strength!! haha

OMG fellow sista! What a goof, but it is so reassuring to know that you have my back! I know that Dr. Gre@#$% has become a serious ally for you-finally-and I am happy for that. It's not the tears, but your faithful and contageous laughter that gets me thru--thx bunches dear!!

I don't know how Sue rcvd two response posts....I guess my brain still works faster than my fingers - that's good, right? M

I started remicade in March pain has dissappeared almost at all times.

I feel better inside/blood pressure is below/at normal.My breathing is not a prob now.I'm back at riding my bike 100-300 km.per.month,walking with a quick pace,,eyes are not sore every morning,I feel like I'm 20 again and no more headaches,because of swelling in the jaw/ear area.

The doc's were after me for 5 yrs to start this,i was hurting badly,CSB approx 200+ every month,but with my parnoia/and basically scared,I said I would suffer.And suffer i did.

I'm glad i waited tho as it would hav run its course and start becoming more ineffective by now with what I read about how long it works

But when I start eating starches again since atarting Remicade after a couple days the effects of remicade are weary.The pain is quite
noticeable,back,hips,neck,headaches,,etc.So I avoid,starches n dairy,Drug works great than after 3-4 days

I hav had NO side effects yet,,knock on wood,,and its been 6 monthd,wow I feel great going back to work full time,and getting a new car(2nd hand new to me,,lol)

But in my experience stick with the NSD always,I find the drug does the job a lot better with the swelling caused by my auto-immune eating away at me,,,hope this insight with my experence helps you with your decision to get on remicade.

cheers,,,Andy

Hi Andy,

You have helped immensely! Thx for the insight to your own experience. I can only hope mine will be as successful. I do agree with the starch issues too. I notice a big difference when I stay away from them.

I am so happy for you-hope it keeps up for you!