Remicade......Yes or No?

[KyWoman]

I'm going through H*** trying to decide whether or not to let my rheumy put me on Remicade.

My immediate family (namely my husband and son) are having a fit, saying that I am writing my death warrant if I do it. In the literature I gave them to read from the manufacturer (Centocor), almost every other paragraph mentions I could have "fatal" reactions if I take it. Did I give them the wrong literature?

It says I must start treatment for TB before I take Remicade? WHAAAAT??? That's just downright SCARY!

And how the heck am I supposed to know if I live in a "region where histoplasmosis or coccidioidomycosis is common"?

Blood disorders, some fatal? What is that all about?

Nervous system disorders? Numbness? Weakness? Tingling? Visual disturbances?

Lymphoma? (jeeeeez, what kind of life is THAT?)

Serious infusion reactions? Hives, Low blood pressure (yah, that'll be the day), Difficult breathing?

I'm really having second thoughts now, about starting Remicade therapy, but my Rheumy says this is the end of the line. The crossroads. Because nothing else is working.

My rheumy also told me when I asked him about the possibility of coming off it after a while, he said, "I'm afraid not. Once you're on Remicade, it's a life-long committment." But along with that, he said treatment is "...a crap shoot." A CRAP SHOOT!!!!!

So now, I'm wondering if my family isn't right, and life-long may mean just a few limited infusions or something. Am I really writing my death warrant?

Has anybody here ever taken Remicade and successfully come OFF it?

I'm aching for the return of flexibility so I can continue to do my job (I'm a technical writer of policies and education materials), but my fingers are quickly curling up to where soon, I won't be able to type (work). Which, in turn means that my brain will cease to function, and I'll just die anyway. I really love my job!

Do I "can" the notion to start Remicade treatment and take the gamble that my fingers and toes (and hips and shoulders) are NOT going to get worse?

See what I mean by torn up going through H***?

There's got to be a reason...
I don't ever want to waste another day...
I want to make it through---in spite of my tears.

Can Anybody Hear Me?
Is Anybody Out There?

[docmks]

Hi KYWOMAN,

I'm out here and I am listening! I've not had to make the Remicade decision yet, but many folks on this board have, and they will be along to share their experiences. A lot of people here have been helped by this biologic.

The side effects that you are reading about are similar among all of the biologics -- Enbrel and Humira, including the references to TB and Lymphoma. Biologics suppress our immune system and therefore a very small percentage of people may develop infections that they wouldn't otherwise like TB and the ones with the long names that you've mentioned. Also, our immune systems are related to various kinds of blood forming cells, and thus the reference to certain blood disorders. However, there are ways to monitor these things very carefully, but doing the appropriate tests before starting treatment and during treatment. These include diagnostic tests (chest x-ray and skin test for TB) and blood tests (white count, CBC, etc). The reference to Lymphoma you are going to see with every treatment available to us, whether it be Methotrexate, Enbrel, Humira, or what have you. There is some evidence that some of us might have a higher risk of lymphoma no matter what treatment we are on due to our genetic makeup.

One thing I do know about Remicade is that they are cautious, initially, of allergic reactions when they first start treatment. This is because of the kind of antibiodies they use in making Remicade and a small percentage of people do have allergic reactions. So they give you antihistamines to guard against this. Also, a lot of rheumies recommend being on Methotrexate (MTX) with Remicade.

You can and should take some time to decide. You should get another opinion from another rheumy if you are uncertain, and you are certainly in the right place to find other remicade users. I am sure you will be hearing from them; remember, the weekends can be a little slow on the Message Boards, but people will be along. I do know someone who went on Remicade for Crohn's Disease. She went into a remission and she is no longer on Remicade. The last time I saw her she looked incredibly healthy and said she felt great. Docs are obligated, as are drug companies, to tell us absolutely everything that can happen with a medication, no matter how low the percentage. A medication is a "crap shoot" in the sense that what works for one patient won't work for another---we are all different. There are probabilities of developing certain side effects and most of them are low. In the case of biologics, we don't always know long term risks, because they have not been out long enough. We with PA and P have got to weigh these risks and benefits for ourselves and decide. There is no way of knowing for sure how badly you;ll develop PA without medication. However, it does tend to be highly aggressive and destructive in many people. A number of people loose mobility and spend a great deal of time in chronic pain. Ultimately, it is going to have to be your decision as to how you weight the potential benefits against the risks.

In the meantime, do try to slow down a bit, and know that you can take some time to research this and find out all you can. Try not to add to your stress by getting caught up in fear and in the unknown. It can happen easily to us if we let it but it makes things worse. Take good care, and please keep posting. We're all here to help; we've all been in similar places!

MK

[Saxmom]

I was on Remicade for a short time two years ago. IF you have been tested for TB and had a negative reaction to the test you will be fine and shouldn't need further treatment for it. A lot of the other questions you have should be things that your doctor has already taken into account about your location and such.

When you have your influsions, they do give you a few pills to take to ward off any allergic reactions. The biggest side effect is that some people's blood pressure drops very low but that is really very rare and if you've never had that problem you probably will not have it with your infusions.

As for being on it the rest of your life, if it works well for you, why wouldn't you want to be on it the rest of your life? If it is not working, then you'll try something else.

Have you been on Enbrel or Humira? If not then those are two options to try if the Remicade doesn't work for you. Also there are new drugs being researched all the time. The is a new infusion drug which is right now awaiting FDA approval. It is a drug that is supposed to be for those of us who have not responded to the current biological drugs.

So I would say that first you need to calm down some and then go back through some of the other threads on the boards from the past where this topic is discussed. If you are still uncomfortable, talk to your doc again and then get a second option.

Good Luck with your decision,
Paige

[mdt13]

I've been on Remicade for around a year now and I am extremely thankful to be living in an age where medicine is available to help stop PA. Before remicade, my PA was getting worse despite the tolectin (NSAID) and sulfasalazime regime I'd been on for the previous year. Remicade has made me feel mostly normal again. The only adverse effects I've encountered were raised liver enzymes from my methotrexate. When the blood tests revealed that, my mtx dosage was cut in half and I have had no problems since. Of course, every person will have different results, but I certainly view Remicade as a true miracle drug and not a "death warrant".

[RebeccaSK]

I'm on Remicade and have been since the spring sometime. It has helped my PA to the point that I'm mostly pain free. The past seven weeks I have had no pain from PA. I'm a little stiff in the morning, but rarely longer than 20 minutes. My P cleared fairly quickly except for a smalll patch on my right ankle.

Now, the bad news. About 2-3 months ago, I developed what was initially diagnosed as ppp. Very mild case. But over the last month, I have p (some form of it) back in all the unusual places - some of which I don't care to even mention here. I am in a lot of pain from it. I have patches under may right arm, buttocks (and other nearby areas), ears, right leg, almost entire right foot, hands with a particularly bad patch on the palm side of my thumb -- makes using the space bar on the computer "touchy." This "P" does not look like any other P. My skin is basically very red and peeling. I get patches of scales in places, but on my hands the skin is just cracking and peeling off, leaving hang nail pieces of skin.

My groin is full of inflamed areas.

My rheumy is sort of stumped and sent me immediately down the hall to see a derm who saw me right away. The derm says he has never seen anything like this with a person on remicade (and I'm also on MTX). He says the change in appearance of the P might be due to the remicade and/or MTX. He has prescribed 3 different topicals for the different areas and wants to see me in two weeks.

So, what do I think? Well, I'm repulsed by the appearance of my skin. I am sickened with discomfort I feel by just using the restroom -- very painful from either orifice. Sorry to be graphic, but I know of no other way to put it.

But having all that, is much better than the pain I felt from the PA. Better is not right word -- I can't really think of a word for how I feel other than depressed. I'm happy to be PA pain-free, but I'm disgusted by the return of the "P."

I was mostly clear for several months and it was so worth it to be able to wear shorts and short sleeves.

PA can damage your bones. Stopping it is essential, IMO. I can live with the ugly skin. I think so, anyway. It's up to you, but IMO, remicade is great.