Seronegatve Sjogren's Disease: Link to good article

[Jasper]

Excellent article about Seronegative Sjogren's Disease in Minnesota Physician, June 2016:

Click on the link below and go to pages 14 and 15 to read the article.

https://issuu.com/mppub/docs/mn_physician_june_2016

[Carolina]

Thanks for an informative article.   It looks like some doctors and some research are catching up with 'the facts on the ground'.

Hugs,  Elaine

[Jasper]

Carolina ..... Yes, I agree with you.

The author of the article, Dr. Parastoo Fazeli, is my Rheumatologist. She is superb ..... very well educated, competent, and compassionate. I am very fortunate to have her as my Rheumatologist. Thanks to her, and the Rituxan infusions she prescribed, I now have much of my life back.

[Sharon]

Thanks for the article Jasper, I may send it to my GP.
What symptoms did the Rituxan help you with?

[Jasper]

Sharon .....

I had 1000 mg Rituxan infusion on Feb. 25th and another 1000 mg infusion on March 10th. Within a month of the first infusion I started to feel better.  Rituxan has been very effective in lifting the fatigue and giving me energy. I am accomplishing things. I can think more clearly, process thoughts more rapidly, concentrate better, remember more. I can figure things out (like how to operate new electrical equipment).  I feel better than I have felt for years and years.  I can plan and do things now, which I could not do before Rituxan. My peripheral neuropathy pain/burning is much improved, at least 50% improved. My joint pain and stiffness is much improved. My urinary symptoms are improved. I feel globally improved. For me, Rituxan has been a miracle.

Rituxan may have improved my saliva flow but I am not sure about that since my saliva flow had already increased with CoQ10 and possibly other supplements such as Omega 3s. I no longer needed to carry water with me or drink water at night even before I had the Rituxan infusions. So, Rituxan may not have improved the saliva flow.

Rituxan did not do anything that I can tell for my dry eyes. I still use Restasis and, if I do not use Restasis, I will know within a few hours because my eyes get gritty and feel like there is a foreign body or sand in them.

I have my second set of infusions on Aug. 11th and Aug. 26th (2 infusions every 24 weeks). The studies showed even more improvement with the second set of infusions, so I am hoping that I improve even more.

[Deb 27]

So glad you found a medication that is working Jasper. I think a lot of us don't get the right treatment.

Thanks for a very good article! What they described was exactly what I went through. Years of not knowing what I had, thinking it was fibromyalgia or depression or something else. It  greatly impacted my life and my career. All doctors should read this.

[warmwaters]

good article Jasper. Thanks

[Sharon]

That's great Jasper, happy you found a treatment that helps you!
Any unwanted side effects (short or long term) from the Rituxan?

[Jasper]

Sharon .....

About 80% of people have some type of transfusion reaction with the infusions.  To help avoid these reactions and to lessen their severity, people receiving Rituxan infusions are premedicated with IV steroids, oral Benadryl, and Tylenol. However, as stated, about 80% of people will still have some type of infusion reaction. Unless it is a very severe reaction, additional IV steroids and IV Benadryl are given and these additional drugs generally clear up the reaction and the infusion can be finished.

I had transfusion reactions both times I received the infusions. I received additional IV steroids and IV Benadryl and this kept the reaction under control. After the infusion, at home, I took 50 mg Hydroxyzine for a couple of days for some residual edema and itchy throat and cough. After that, I was fine and had no further reactions of any kind to Rituxan infusions.

I do know that Rituxan, as well as other immune suppressants and biologics, suppress the immune system so they do make us more susceptible to infections. I did get a sore throat, cough, and very bad sinus infection about a month after receiving the first Rituxan infusion. I needed 2 courses of antibiotics to clear up the sinus infection and the dry cough lingered for months, even with additional treatment such as a short course of Prednisone. It is finally mostly gone.

In the past I developed Shingles while on high dose Prednisone.  Last December I developed Shingles  and an abscess (2 separate problems) while on Cellcept, so increased susceptibility to infections will occur with any immune suppressant.

However, increased susceptibility to infections will not stop me from using Rituxan. I will take my chances. I have a life on Rituxan whereas life without Rituxan was a constant struggle to do anything more than just exist. One just has to weigh the pros and cons and, for me, the pros vastly outweigh the cons.

[Sharon]

Thanks for all the info Jasper,
So true that we need to strive to do more than "just exist"!

[Kathy57]

Thanks for posting this. Jasper!

I am seronegative and two Iowa City doctors (ENT and Oralmaxilifacial Surgeon) were certain that I had Sjogrens until they saw my lab.  I was very bummed out because I knew I had it but couldn't understand why I felt so sick and my bloodwork was negative.

Thankfully, my Rheumatoligist understood and told me he felt certain that I had Sj?gren's and told me that it is not all uncommon to have negative blood work.

I've heard good news about Rituxan.  I hope it continues to work wonders for you and I am hoping that you avoid any infections! 

Loved the article!

Kathy