topic Re: What would you do? in Wellness

What would you do?

LilacTree — Fri, 31 May 2019 18:03:49 GMT

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?

Re: What would you do?

Puppy Lips — Fri, 31 May 2019 18:07:20 GMT

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.

Re: What would you do?

pommom — Fri, 31 May 2019 18:07:21 GMT

I would get a second opinion.

Re: What would you do?

Laura14 — Fri, 31 May 2019 18:08:44 GMT

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.

Re: What would you do?

sydsgma1 — Fri, 31 May 2019 18:15:50 GMT

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)))

Re: What would you do?

tansy — Fri, 31 May 2019 18:15:46 GMT

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.

Re: What would you do?

Desertdi — Fri, 31 May 2019 18:19:45 GMT

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

Re: What would you do?

alliswell — Fri, 31 May 2019 18:34:33 GMT

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

Ditto

Re: What would you do?

AuntG — Fri, 31 May 2019 19:16:12 GMT

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.

Re: What would you do?

Ketra — Fri, 31 May 2019 19:29:40 GMT

@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.

Re: What would you do?

reiki604 — Fri, 31 May 2019 20:35:32 GMT

I'm surprised the MD offered you this drug given your aversion to taking biologics. This drug is a biologic. I would speak to the MD to see what the rationale is for ordering this.

Re: What would you do?

LilacTree — Fri, 31 May 2019 21:43:16 GMT

@reiki604 wrote:
I'm surprised the MD offered you this drug given your aversion to taking biologics. This drug is a biologic. I would speak to the MD to see what the rationale is for ordering this.

@reiki604

This ia a new doc, she doesn’t know anything about my aversion to any meds.

I will go to the appt., let her give me her plan, and then ask many questions. She will then find out soon enough. As you said I want to hear her rationale first. There might be something in my labs that she feels I need this strong a treatment for. No matter what it is, it won’t be this med.

Thank you everyone!!

Re: What would you do?

LilacTree — Fri, 31 May 2019 21:46:50 GMT

@sydsgma1 wrote:
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)))

@sydsgma1

I’m so happy you survived this! Were you aware of the dangers before you took it?

Re: What would you do?

LilacTree — Fri, 31 May 2019 21:49:34 GMT

@Laura14 wrote:
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.

@Laura14

I really like that . . . “No is a complete sentence!”

Re: What would you do?

eddyandme — Fri, 31 May 2019 21:52:12 GMT

Would you consider alternative medicine? Perhaps acupuncture would work?

I'd changed doctors if at first she wants to prescribe such a dangerous drug. At least get a second opinion.

Re: What would you do?

LilacTree — Fri, 31 May 2019 21:57:56 GMT

@eddyandme wrote:
Would you consider alternative medicine? Perhaps acupuncture would work?

I'd changed doctors if at first she wants to prescribe such a dangerous drug. At least get a second opinion.

@eddyandme

I would love to try acupuncture. However, Medicare doesn’t cover it, and I can’t afford it.

Re: What would you do?

hckynut — Sat, 01 Jun 2019 01:39:23 GMT

Hi my friend @LilacTree .

From what you've posted here, and you know them to be factual? You didn't mention what the benefits of this drug.

All the meds and procedures I have had done, were not risk free, so I weighed which one I felt better choosing. I really cannot fully answer, other than to say what I do, and have done.

This posted originally before I was done, and I changed it.

Your Friend,

JOhn

Re: What would you do?

eddyandme — Fri, 31 May 2019 22:15:07 GMT

@LilacTree wrote:
@eddyandme wrote:
Would you consider alternative medicine? Perhaps acupuncture would work?

I'd changed doctors if at first she wants to prescribe such a dangerous drug. At least get a second opinion.
@eddyandme
I would love to try acupuncture. However, Medicare doesn’t cover it, and I can’t afford it.

I would check around with different accupuncture doctors, explaining my financial situation. Perhaps, a payment plan or students working on you would be advised. I prefer alternative medicine whenever possible and have had acupuncture and was very pleased - it doesn't hurt - needles are tiny.

Sort of OT: When my precious Jade had metastatic bone cancer, I did not like Tufts Vet Hospital's protocol (they do have acupuncture but did not offer it for this cancer). I got a vet who makes house calls and does acupuncture (and a Tufts graduate). Though we did not win the battle, the head of oncology there was amazed at how long Jade lived. We were asked to come backfor a day at their cost and our convenience so they could re-evaluate Jade. My vet, and now friend (she sees Eddy now for regular check-ups), met with Tufts several times explaining what we did. Long story short, Jade could not walk and was barely hanging on when Karen agreed to take her on; withint two months of weekly treatments, Jade was running in our yard - on video on her site. So, imho a combination of western and eastern medicine can work wonders. I'm sure there are kind practitioners out there who will advise you and help you get assistance.

Re: What would you do?

RedTop — Fri, 31 May 2019 23:00:57 GMT

Honestly, I think if I had numerous chronic health problems, I would try to get medical marijuana and stop the doctors visits and the search for the right meds.

Re: What would you do?

sydsgma1 — Fri, 31 May 2019 23:23:43 GMT

@LilacTree I was very aware of the side effects long before I agreed to it. Not only did I talk to my dr and the infusion nurses, but also spoke ton3 people who have had a lot of success with it. I

I did not choose this without greatthought . You know I like to be active, travel etc. and this has relieved all of my symptoms..no pain, stiffness, swelling etc. I did not feel well for a couple of days but it was manageable.

It is a chemo drug, but is used very successfully for ra. That being said, I would be interested in why your dr chose it as a first biologic. And I do know your aversion to these drugs.