What would you do?

LilacTree · ‎03-25-2012

Spoke to my new rheumatologist yesterday who I will be seeing in two weeks. She said based upon my labs, she will probably be recommending Rituxan/rituximab given in two infusions. I had heard of it, but never researched it before.

As soon as l posted this on my family Facebook page, I received two warning messages from members of my family about this med. I then posted on my two forums, and read about others’ experiences with this drug. All warned against this drug. One man said he almost died during the first hour of the first six hour infusion, and although they stopped the infusion once he began exhibiting dire symptoms, he has never been the same again.

Then I read the black box warning about this med which corroborated what all had said. This is a very dangerous and life threatening drug. I don’t know why this rheumatologist wants to start out with this kind of treatment and I already have decided I will not take this dangerous med.

I had such high hopes for this rheumatologist . . . Now I don’t know. This seems too radical to me.

What do you think? Should I go to this one appointment or just cancel?

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986

Puppy Lips · ‎05-09-2010

I would go to the appointment to see what the Doctor has to say. But if you have decided not to use this drug, I would not let the Doctor convince you otherwise. Maybe they have something else that could help you.

Good luck.

Always remember that you are absolutely unique. Just like everyone else. Margaret Mead

pommom · ‎03-10-2010

I would get a second opinion.

If your face brightens when you meet a friend, you have struck gold. - unknown

Laura14 · ‎06-09-2014

This is primarily a cancer drug so if you can live with your symptoms as is, I'd be hesitant as well.

I assume your family and the posters are not medical professionals (nor am I) so absolutely speak to the doctors who know you and your situation and then make an informed decision.

Don't ever be afraid to say no to something you do not want to risk side effects for as long as you have all the information. I've done it and no is a complete sentence as long as you can live with the other side of it.

sydsgma1 · ‎03-09-2010

Lilac tree...I just completed my 2 infusion induction of Ritauxan. It is one of the LAST biologicsthat my rheumatologist uses..only after onehas tried and become immune to enbrel, humira, remicade,, Orencia, actemra etc, I am honestly appalled that you would start infusions on this drug.

you know I have found biologics to be very helpful to me but I would caution you to really question this decision. My infusions with it were a little rocky but I did ok.

Please keep me posted...(((Hugs)))

tansy · ‎01-02-2011

I would go to the appointment, let her know your concerns and then listen to why she thinks the benefits of the drug override the side effects.

Desertdi · ‎03-13-2010

I personally would freak out if knew about those "side effects"..........cancel the appointment and find another doc.

♥Surface of the Sun♥

alliswell · ‎07-12-2012

@Desertdi wrote:
I personally would freak out if knew about those "side effects"..........cancel the appointment and find another doc.

Ditto

AuntG · ‎03-09-2010

I'd to go the appointment but I wouldn't mention all the negative things I've heard. Wouldn't want to appear defensive at the get go. However it's highly unlikely I'd agree to this treatment. I keep thinking back to a lady I knew - they over treated her to the point of killing her and the doctor refused to discuss the aftermath with her family.

Ketra · ‎02-16-2018

@LilacTree wrote:
Spoke to my new rheumatologist yesterday who I will be seeing in two weeks. She said based upon my labs, she will probably be recommending Rituxan/rituximab given in two infusions. I had heard of it, but never researched it before.

As soon as l posted this on my family Facebook page, I received two warning messages from members of my family about this med. I then posted on my two forums, and read about others’ experiences with this drug. All warned against this drug. One man said he almost died during the first hour of the first six hour infusion, and although they stopped the infusion once he began exhibiting dire symptoms, he has never been the same again.

Then I read the black box warning about this med which corroborated what all had said. This is a very dangerous and life threatening drug. I don’t know why this rheumatologist wants to start out with this kind of treatment and I already have decided I will not take this dangerous med.

I had such high hopes for this rheumatologist . . . Now I don’t know. This seems too radical to me.

What do you think? Should I go to this one appointment or just cancel?

@LilacTree I would definitely go to the appointment, but tell her you do not wish to take that drug if you do indeed feel that way. Ask if she has additional recommendations and ask her to go into detail regarding the side effects. If you need time to think about her suggestions and want to do research on the alternate drugs please do so! Tell her you’ll call her nurse and let her know what you’ve decided to do. Even the best of doctors aren’t aware of all the side effects of the drugs they prescribe. It’s your life, and you have the final say about what you put into your body. I’ll pray that the Holy Spirit guides you to the right decision.