I might need to take Rituxan for low platelets
Four IV treatments one Tx a week for four weeks
I've heard it can cause your hair to thin, and lower immune resistance.
Omg
Who has had this medication?
What were your side effects?
Did it help with your medical problem?
Thank you.
I don't have personal exeperience with it, but my sister gets it. She has MS, RA, and fibro and is in a lot of pain. She loves it. The infusions last for months and make her feel much much better. She has no complaints with it.
I hope you find it helps you.
Nomad .....
I have been on Rituximab since last February. I had 1000 mg on Feb. 26 and again on March 10th. 24 weeks after the first dose, I had 1000 mg on Aug. 11 and again on Aug. 26th.
Rituximab has been a miracle drug for me.
I had profound fatigue prior to starting Rituximab. I had no energy. No matter how much I wanted to do things, I could barely move. I could barely do anything, even cook or eat. I was eating sandwiches and soup as I had no energy to prepare food. I had not done laundry in 5 months or cleaned the floors in 5 months. Every step was an effort. I could not think clearly and I was affected cognitively. I could not even concentrate to read or watch TV. It was terrible. I got up each day only to wait to lie down again.
I was NOT depressed. I WAS profoundly fatigued. There is a huge difference between the two.
About 4 weeks after starting Rituximab, I noticed more energy and less fatigue. By 2 months after starting Rituximab, I had considerably less fatigue and considerably more energy. I also had more salive, considerably less neuropathy pain and fewer neuropathy symptoms. My joint aches and pain are considerably less. My cognitive function is vastly improved.
I am not back to a pre-Sjogren's state of health or energy. I used to be like the energizer bunny, full of energy and never fatigued. However, I am happy with the vast improvement that Rituximab has given to me. My symptoms have improved dramatically on Rituximab. I can function. I can walk, cook, clean, travel, participate in activities and events, socialize, carry on a relatively normal life. No, I cannot do 10 mile hikes. Yes, I can do 2-3 mile walks. I can do several things in a day, not just 1 thing or nothing. I can read and concentrate. My PN symptoms have improved dramatically.
I have a life now. (I did not have a life prior to Rituximab, at least not for several months/years prior to Rituximab.) This is the best I have felt in years.
In addition, I have not had any flares since starting Rituximab. In contrast, I had 5 flares in 2015 and was on Prednisone tapers for each of those 5 flares.
I have no side effects from Rituximab. I did have some infusion reaction problems on the days of the infusions, but they were taken care of by additional Prednisone and Benadryl infusions. After that, I have had no side effects.
My Rheumatologist told me she is using Rituximab infusions more and more on her Sjogren's patients and is having very good results. She told me she is even able to wean some patients off of Prednisone. And it is working on patients who did not respond to the other drugs.
Both my Rheumatologist and my Dermatologist said that most people tolerate Rituximab very well. My Rheumatologist has had no one develop side effects from Rituximab (other than transfusion reactions, which are generally very easily treated).
I go for my third set of infusions in Jaunary 2017.
Your Rituximab infusion regimen sounds different than the usual regimen (dose and frequency) used for Sjogren's. That may impact what benefits you have from the infusions. I have a friend with Sjogren's who also has lymphoma. Her regimen is different from mine because she is getting her infusions for the lymphoma. However, her Rituximab infusions have vastly improved her Sjogren's symptoms as well as kept her Lymphoma under control. Before her infusions, she was in the same condition as I was ..... pain, severe fatigue, neuropathy, etc. On the infusions, she feels very good and has a life.
I hope your infusions work out well for you and that you experience benefits from them.
Jasper- Did you have any difficulties getting your health insurance to approve the Rituximab for Sjogren's?
My health insurance approved Rituximab infusions for my sero-negative RA.
They would not have approved Rituximab for my Sjogren's Disease because Rituximab is not yet FDA approved for Sjogren's Disease.
Rituximab has improved my joint pain and stiffness but it has also improved almost all of my Sjogren's manifestations/symptoms as well. In addition, I have not had any Sjogren's flares since being on Rituximab.
Some insurance companies will approve Rituximab for Sjogren's Disease. It is a real shame that all insurance companies do not approved Rituximab for Sjogren's Disease because it is definitely beneficial for many of us.
I can only get it if I get an RA diagnosis, which is being witheld since I do not yet have visible joint swelling. I do have all other RA symptoms. Truly frustrating.
My experience is somewhat similar to Jasper's. I was diagnosed in March after a 9 month illness. Positive SSA/ANA. My local rheumatologist diagnosed Sjogren's based on the blood marker; Johns Hopkins diagnosed "Undifferentiated Connective Tissue Disease, pointing to Sjogren's". Based on the Sjogren's diagnosis, my insurance company (Excellus BC/BS) approved the Rituxan.
I had no problems with the two infusions in August. It took a while but I would say that I am improved overall.
Specifically, I was able to return to work after a semester's leave from teaching and have taken no sick time since September. I have been able to participate in activities and lead a life that appears fairly normal. How do I feel? Compared to how I felt at disease onset, well improved. Compared to my pre-disease self, not close. I still have aches and pains that come and go. My endurance is not great - I used to bike to work regularly. But I think Rituxan has made a significant difference. I had neuropathy that was troubling but that seems to have improved. In its place have come aches and pains!
When I saw my rheumatologist for a follow-up the week after Christmas, he suggested that I NOT do another infusion at the 6 month mark, and wait to see how I'm doing. That has put me in a tailspin! I don't ever want to return to my pretreatment level of illness if I can help it. I'm also willing to try any medication to prevent the progress of this disease.
Jasper - did you notice any cumulative effect from multiple infusions? That would be nice!
Hope my input is helpful!
Anastasia
Anastasia .....
Yes, I have noticed more improvement in the past 24 weeks.
I had significant improvement during the first 24 weeks and I have had even more improvement during these past 24 weeks.
I would lobby to continue treatment if I were you. I would NOT stop and "wait to how you are doing." I would really lobby to keep getting the infusions.
Stopping may jeopardize all you have gained, in terms of improved health and well being, decreased symptoms, decreased disease activity, and improved life (as well as going back to work).
I agree with you and feel the same, I don't ever want to return to my pretreatment level of illness and I'm willing to try any medication to prevent the progress of this disease.
I think the docs do not appreciate how absolutely devastating and debilitating this disease is.
Here is a link to a 120 month study which shows how beneficial Rituximab is for us (at least some of us, probably not all of us). The article is long but it is well worth the read. It clearly demonstrates that people continued to improve even more after 24 weeks. Maybe your doc needs to read this study. Figures 1 and 2 and table 2 show the areas of improvement that patients had as well as the amount of improvement. They also show the time frames of the improvements.
http://arthritis-research.biomedcentral.com/articles/10.1186/ar4359
I think everyone with Sjogren's should be able to try these medications and see which ones work for them. They are treating alopecia and psoriasis with the big gun drugs. Those conditions are not disabling. We become disabled. Why are we not considered sick enough to treat. (II am not saying alopecia and psoriasis should not be treated, but if they are treating those patients, surely we should be able to treat also.)
When I was 5 weeks away from the 24 week mark, I saw my Rheumatologist and discussed the next set of infusions. She never even suggested not doing them. She knows they need to be repeated every 24 weeks. At that time she ordered the next set of infusions. I saw her again in Oct. and she ordered my January infusions.
She told me she is using Rituximab more and more in her Sjogren's patients and she is having very good results, even getting people off of daily steroids.
If I was you, I would really push for getting your next set of infusions.
Best of luck.