[Irenemz]

Stem cell transplant with Sjogrens syndrome

by Irenemz on Wed Jul 13, 2016 2:38 am

Hi everyone,

This is the first time I am posting a message although I have been following this forum since I was first diagnosed with multiple myeloma in November 2015. I find the information very helpful.

My question is if anyone with autoimmune problems has had a transplant and how did they do.

I currently have Sjogren's that is active as well as lupus, Raynauds, IBS, and glaucoma. I am scheduled to begin the stem cell transplant process the end of July. I am most concerned about the Sjogren's because of all of the moisture issues. I have dry eyes and nasal passages, and occasional mouth sores. I use prescription eye drops as well as a room humidifier and a hand held humidifier and a sinus rinse twice a day to keep things under control.

The doctor at Stanford thought I might be a little higher of a risk because of my stomach issues. Although she thought the risk is still worth it. She did say if I didn't do well after the stem cell harvest we would not continue. I am hoping that I can complete the stem cell transplant.

Has anyone been through a situation similar to this?

I would appreciate any thoughts or options. Thank you.

[cnv2855]

Re: Stem cell transplant with Sjogrens syndrome

by cnv2855 on Thu Jul 14, 2016 6:16 pm

Could you please inform me how you went about getting approved for this procedure?

I was hit with autoimmune disease that include both lupus, Sjogren's, and other symptoms. While not life threatening, I feel like I'm spending the majority of my time surviving, not living. I've tried everything from Cellcept, to Rituxan, and Benlysta (which has helped a little), to years on prednisone.

I am reaching the end of my rope and would accept all of the risks of this type of procedure at just a chance at living a normal life. I can't find any information on how to apply, where they're done, or who to contact.

[Irenemz]

Re: Stem cell transplant with Sjogrens syndrome

by Irenemz on Thu Jul 14, 2016 9:49 pm

Hi,

I'm sorry to hear about all of your autoimmune issues. I know how difficult it can be.

The reason I was approved for the stem cell transplant was due to the multiple myeloma. The oncologist said that this procedure may also help with my autoimmune problems. Even though I have these autoimmune problems, the reason I was approved for this procedure is to bring my myeloma into complete remission. That is the hope anyway.

I hope somehow you are able to get some relief. Take care.

[Multibilly]

Re: Stem cell transplant with Sjogrens syndrome

by Multibilly on Thu Jul 14, 2016 10:53 pm

cnv,

Several insurance companies consider transplant treatment for autoimmune diseases to be experimental. But you might want to check with your insurance company to see what their ruling is. Then I would look at clinical trials at https://clinicaltrials.gov . Just search for open trials using the key words "lupus transplant" or something similar to that.

There are also many non-transplant trials going on for various autoimmune diseases.

[gkevinphd]

Re: Stem cell transplant with Sjogrens syndrome

by gkevinphd on Fri Jul 15, 2016 7:59 am

I was diagnosed with celiac sprue about six months prior to my multiple myeloma diagnosis. Since I have IgA lambda myeloma, I am inclined to believe there is a causal relationship between the two diseases. No definitive proof, but some research groups have proposed relational mecha­nisms which are biochemically plausible. Is your myeloma IgA?

Regardless, to answer your question, I had an autologous stem cell transplant in April 2015. I had NO problems with harvest, transplant, or recovery. I have not challenged my system or had a repeat blood test for celiac. I'm in CR and, to quote my myeloma specialist, "with this type of response, I wouldn't mess with anything!" So the gluten-free diet will remain.