Author Topic: Chemo for Sjogren's  (Read 2404 times)

ttdub

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Chemo for Sjogren's
« on: March 19, 2012, 08:42:44 PM »
Has anyone else gone through this? I've been speaking with a very kind person who has lupus and sjogren's, and was curious if anyone else has gone through this before. This person said the autoimmune disease has spread to the brain, and they are using chemo to help.

irish

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Re: Chemo for Sjogren's
« Reply #1 on: March 19, 2012, 11:20:51 PM »
Lupus has the propensity to cause psychiatric/CNS issues. It may be that the chemo is being given more for the lupus.

Chemo is given to people with sjogrens. In fact, most of the meds such as cellcept, methotrexate, etc are considered "chemo" drugs and are given at lower dosages than when used for malignancy or to prevent rejection in transplants..

Some of these drugs are in the first line up of drugs many years ago and now are used more as oral low dose meds for the sjogrens and other autoimmune diseases.

You need to ask your doctors about this as there is a lot of info out there and no one here can give you an answer that is specific enough---just generalities. Irish ;D

CathyO

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Re: Chemo for Sjogren's
« Reply #2 on: March 19, 2012, 11:40:11 PM »
I had a friend who did chemo for a super rare blood condition (like 1 out of 6 in the world, so 1 in a billion!). It did help her. Her sister had MS. 

gardenlover

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Re: Chemo for Sjogren's
« Reply #3 on: March 20, 2012, 07:50:21 AM »
I have a friend who has/had UVitis or iritis (kind of like arthritis in the eyes).  She was on a strong dose of methotrexate for 2-3 years.  She'd do treatment on the weekend and usually felt better by the first of the week.  She is in remission now and highly recommends it (she was working with a specialist at Harvard).
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Aquarius

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Re: Chemo for Sjogren's
« Reply #4 on: March 20, 2012, 11:04:32 AM »
My sister has CNS lupus and has suffered greatly.  Over 10 years she tried many treatments including plasmapharesis.   The plasmapharesis almost killed her because she developed sepsis.

The only thing that has helped is chemotherapy with rituxan and cytoxan.   

rnathans

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Re: Chemo for Sjogren's
« Reply #5 on: March 20, 2012, 01:43:02 PM »
When Sjogrens caused me severe gastroparesis to the point of being on a feeding tube for 6 months I was treated for a year with cytoxan. It worked. Feeding tube no longer needed and my  stomach is back to almost normal.

Daisy1234

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Re: Chemo for Sjogren's
« Reply #6 on: March 21, 2012, 12:24:45 AM »
Just want to add my two cents worth.  I'm currently on a chemo cocktail and I have severe Sjs and non-hodgkins Lymphoma caused by Sjs. 

Let me tell you, that I am struggling quite a bit with the side effects.  So much so that that the first 4 months that I was on the chemo, my Oncologist told me that they were going to stop giving me chemo because the chemotherapy was killing me faster than the cancer was. 

So they took me off of chemo and restarted it again 3 months later and I've been back on it again since January 2012 and frankly its brought me to my knees again and I am struggling to try and stay on it so that the cancer can be properly treated.Chemo is not to be taken lightly! 

Also, there are many different types of chemotherapy as well which all interact very differently with your body and have different side-effects and degrees of impact.  One of the chemo drugs I am on as a side-effect has caused me to have permanent severe peripheral neuropathy in both of my feet, just as an example. It has also damaged nerves in my bladder wall.  I could go on and on as I am having some very significant issues with the chemo treatment I am receiving, but then again compared to cancer, it is smaller potatoes.

If you are curious about chemo being considered for your own situation, do make sure that you fully discuss what is the best option for your Sjogrens disease and there are many other avenues to be explored first long before chemo is thrown into the mix.

Daisy
« Last Edit: March 21, 2012, 12:26:53 AM by Daisy1234 »

Joe S.

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Re: Chemo for Sjogren's
« Reply #7 on: March 21, 2012, 05:16:25 AM »
MTX is a chemo drug that is often Rx'd for us. There appears to be a level for AI diseases and a level for chemo. (pills vs injections). 50ml twice per day was too much for me.
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rnathans

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Re: Chemo for Sjogren's
« Reply #8 on: March 21, 2012, 09:15:29 AM »
Well said Daisy. So sorry you are experiencing so many side effects.
I only went on cytoxan after many other things were tried and when my health had been so compromised that it seemed worth the risks. And as soon as we could stop it and switch back to smaller guns we did.

Linda196

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Re: Chemo for Sjogren's
« Reply #9 on: March 21, 2012, 11:10:03 AM »
Joe S. I hope you followed up with whomever ordered that dose of MTX. Even for chemotherapy for malignancy the dose rarely exceeds 30 mg/m2 (that's short for body surface area reached by multiplying body weight in kg by height in meters) and I've never heard of it being given more than once a day, and even then only for about 5 days before the dosing was interrupted.

For an average sized adult (5"5"", 140 lbs) the once a day dose for Choriocarcinoma is approximately 3,000 mg daily for 5 days with a minimal one week break before the next round., and that is the highest dosing, used only for that particular malignancy and for Trophoblastic Disease.

Even if the 50 ml you were prescribed was the pediatric concentration of 10 mg/ml, each vial contained 500 mg, which I'm assuming was given IV. Far more likely it was the 25 mg/ml because the pediatric concentration warnings are very prominent, which would make the total dose/day 2500 mg!

The usual rheumatological dose is approximately 5-10% of the chemotherapy dose.

I must admit it's been several years since I was actively involved in administrating this type of medication, and protocols may have been altered, but when I read your dose, I literally gasped!
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Joe S.

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Re: Chemo for Sjogren's
« Reply #10 on: March 21, 2012, 11:21:43 AM »
Linda196, after going to the ER twice I changed Rhumies. This site provided me with the information that she over dosed me.
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meow

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Re: Chemo for Sjogren's
« Reply #11 on: March 21, 2012, 11:35:36 AM »
For me the MTX is 7.5 mg once a week. 3 pills.
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Patty

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Re: Chemo for Sjogren's
« Reply #12 on: March 21, 2012, 04:20:22 PM »
I had cytoxan infusions after trying all the oral meds over a course of 6 years. Now I am waiting to be scheduled for rituxan infusions. It looks like I would need to repeat the cytoxan infusions too frequently to stay with it. It carries a high risk of bladder cancer and has made my neuropathy worse. I started infusions because of CNS involvement from vasculitis.  Chemotherapy is not something you want to do unless all else has failed.
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