Need advice about chemo and SJS and RA help plz

[juliechurch]

So today my doc brought up that i may could try chemo for the pain i have been having. have any with Sjs or RA looked in to this. I am scared of doing it bc i have saw what chemo did to my sister in law before she passed the pass Christmas eve  and what my grandma is dealing with now going throw chemo. need advice plz 

[Joe S.]

So, your doctor wants to poison you to see if that will help with your pain?

I do not see the logic here. I think you need more information, a second opinion or both.

[ellieas]

chemo may stop one kind of pain but creates other kinds. I had Rituxan for lymphoma treatment and my joint pain was worse for awhile. I now take Imuran for the Sjogren-an immunosupressant for my lung disease caused by Sjogrens.Doesn't do a lot for pain either. I would not these drugs for anything except cancer-you feel crummy afterward.

Just my opinion

Hugs,
Lesley

[juliechurch]

I told him no because of what i have seen with chemo and what it dose to people.
I didn't know if anyone else was told or had info on this. i will just take my pilocarpine 3x daily

[Tharrell]

Hi Julie. May I ask what chemo drug your doctor is talking about? Is it perchance methotrexate? If so the dose you would be taking is much much smaller than what a cancer patient takes. It is quite common second line drug for RA. I have taken methotrexate with out any side effect, others found their stomach could not handle it and went on to do the mtx injections instead. Has your doctor offered plaquenil which is usually the first drug they prescribe. Many people report a relieve in pain symptoms on that.

[juliechurch]

he never said what kind of chemo it would be and yes i did the plaquenil and it messed up my eyes so i had to stop taking it nd went 2 years with out meds until this week when he gave me Pilocarpine for my dry mouth and eyes. i think he brouth it up bc i told him i am not a pill popper i hate taken meds but i had to do something about my mouth bc my teeth. but i have a 14 month old baby boy so chemo is a no go anyways at less for now 

[Jasper]

Several drugs carry the label of chemotherapy but they are not equivalent or the same as what people generally think of as chemotherapy for cancer.  Technically, several drugs are classified as chemotherapy but, as stated, there are several different classes of drugs with that label.

Your doctor may be talking about Methotrexate or Rituximab or another drug used for autoimmune disorders.

I am on Ritucimab, which is considered chemotherapy,  and it has vastly improved all of my Sjogren's symptoms. I have been on it for over a year and recieve a "course" of infusions/treatment every 24 weeks. A "course" of treatment consists of an infusion on Day 1, and infusion on Day 15. Then this "course" of treatment is repeated every 24 weeks.

Other than some reaction to the infusion on the day I get the infusion, I have no side effects. The infusion reactions are easily managed with IV steroids and IV benadryl during the infusion.

The infusions do suppress the immune system so a person can be more susceptible to infections.

However, as stated, side effects to the chemotherapy used for Autoimmune Disorders is not the same thing as the chemotherapy that is generally used for Cancer.

Rituximab is used to treat Lymphoma as well as Autoimmune Disorders but, again, Rituximab is considered a very safe drug and it is generally well tolerated.

Just to put this in perspective, most of the drugs currently used for Rheumatoid Arthritis, and there are several of them, would be considered chemotherapy. Yet, most people with RA are treated aggressively with these drugs in order to achieve remission and/or as much of a decrease in disease activity as possible.

Personally, I think you are very lucky to have a Rheumatologist who is actually willing to treat your disease as opposed to many on this forum who are not being offered effective treatment and wish their Rheumatologista would treat them more aggressively.