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Sjogrens Topics => Living With Sjogren's => Topic started by: Gigi on July 06, 2019, 10:39:53 AM

Title: Rituxan
Post by: Gigi on July 06, 2019, 10:39:53 AM
Just started rituxan .... who has had a good experience from taking it ?
How long does it take to feel the effects ? This disease is really starting to depress me.

Title: Re: Rituxan
Post by: markt on July 07, 2019, 03:22:28 PM
I've been on it for almost two years now and still find that it helps with the arthralgia/oral dryness.  Check some of my older posts for details.  I basically live for the stuff and can't wait for infusions.  It takes about 1.5-2 months to get peak effects; then symptoms creep back in by month 4 or so...  but, everyone's experience is unique and varied based on disease duration/progression.  Lots of articles detailing why...  an added benefit is that Rituximab mitigates lymphoma risk/development and has beneficial effects on a myriad of other AI diseases.

Title: Re: Rituxan
Post by: Gigi on July 07, 2019, 03:32:48 PM
Did you have any side effects?
Title: Re: Rituxan
Post by: markt on July 07, 2019, 06:20:34 PM
Mild infusion reaction on the very first go; I broke out with what seemed like an itchy rash on my head/arms... the nurses slowed the rate of the infusion and it resolved.

Each infusion since has been without issue.  I work and travel a good bit; cannot say that I get anymore illnesses/infections than usual.  I also have two young toddlers though.. so I usually get what they pass on to me.
Title: Re: Rituxan
Post by: Jasper on July 08, 2019, 06:59:46 AM
Gigi .....

I am taking Rituxan infusions and have been since February 2016. I get an infusion on Day 1 and another infusion on Day 15, then I repeat the set of infusions every 24 weeks from Infusion No. 1. Just finished my last "set" of 2 infusions in May.

I have found them very helpful: decreased fatigue, decreased neuropathy pain, virtually no joint pain now, vastly improved cognitive function, increased saliva, and increased energy level. It's not a total magic bullet, but the improvement is very noticeable. I can now function and have a life. I am not doing 15 mile hikes or entertaining 200 people like I used to do, but I can walk 3 miles a day slowly, clean, do errands, cook, attend events, socialize, etc. (not all in the same day, though).

My joints usually feel much better the same day as the infusion but that is from the steroids that I get along with the infusion. I recall that I started to notice a difference/improvement in other symptoms at about 5 weeks and by 6 weeks I knew for sure that the drug was causing improvement. I noticed more improvement as time went on. It can start to wear off at around 20-24 weeks (it varies with different people) but I never go back to the way I was prior to the first set of infusions. Especially my cognitive function stays improved even if my neuropathy, joint pain, and fatigue get worse. Then I get my infusions and everything improves again. I also noticed that with saliva and neuropathy symptoms there is a cumulative benefit. In other words, I did not really notice more saliva after the first 2 infusions but I did notice more saliva after I received more infusions. I think the salivary glands healed some and this took time to show up as more saliva. With the neuropathy, the burning is still there but less, but the electric shocks, wasp bites, vibrating sensations, positional numbness in hands, etc. disappear with the infusions.

So give it about 4-6 weeks to notice the effects. It will start to peak around 8 to 20 weeks and then start to wane. Individual people vary with the time frame.

I have had virtually NO side effects from Rituximab. The serious side effects are rare.

I do get infusion reactions but they are easily controlled by adding more IV steroids and IV Benadryl at the time of infusion. But, other than that I have no side effects and I do benefit from the infusions. So I hope to continue them as long as possible or as long as they work for me.

The immune level is decreased so one may be more susceptible to infections. Avoiding most infections is a matter of common sense. I hand wash often and keep them away from my dace. I steer clear of people who are ill with colds or flu. I avoid enclosed spaces with a lot of people during the winter. I avoid holiday celebrations where there are sick kids. (I check before hand. If anyone is sick, I don't go.) If I go to a play or concert, I sit on the aisle seat and preferably as far away as possible from sick people. If someone is coughing near me, I move. So, basically, common sense.

If you have not had the (new) Shingrix vaccine I would advise getting it as soon as possible (2 injections, 2-6 months apart). You can get the vaccine after you start the infusions, but the injections  have to be timed to fall between the infusions for best effect.

Shingles was the one problem I had after getting infusions. I would get Shingles every year. I am hoping the Shingrix vaccine takes care of that and I no longer get Shingles. I do know how to recognize Shingles and I do keep Valtrex (the drug for Shingles) with me at all times in case I do develop Shingles. I take a full prescription with me on every vacation I am on so I can start immediately in case I get them. Al\lso, if you do get Shingles while on Rituximab, 7 days of Valtrex will not be enough. I take 14 days of treatment when I get Shingles while on Rituximab (ordered by my infectious disease specialist).

I am doing well on Rituximab and hope you do as well or better.
Title: Re: Rituxan
Post by: Sharon on July 08, 2019, 04:24:12 PM
I am considering switching from Orencia to Rituximab as I've had a return of debilitating fatigue.
My main concern is the "rollercoaster effect" you've both described of symptoms waxing and waning.
The big advantage of the Orencia is that I can self inject weekly for steady relief.
Title: Re: Rituxan
Post by: Gigi on July 23, 2019, 07:33:14 PM
Thanks everyone for your feedback . I really appreciate it!
Title: Re: Rituxan
Post by: Cassi307 on July 24, 2019, 08:30:06 PM
Rituxan has been good for me. I have been on it for approximately two years. It brings my inflammation levels down but does not  eliminate it. My problem is that my inflammation levels hurt my kidney function. I know it’s doing well for me because within a few months after the infusion I can usually see a positive change in my kidney function.
 I have been on it for approximately two years  and only get one infusion every six months.  It brings my inflammation levels down but does not bring them to a normal level. My problem is that my inflammation levels hurt my kidney function. I know it’s doing well for me because within a few months after the infusion I can usually see a positive change in my kidney function.
 I have had no side effects. I hope you do well on the infusions.
Title: Re: Rituxan
Post by: markt on July 25, 2019, 06:58:20 AM

Rituximab can be self-administered as subcutaneous injection like Orencia and others.  I'd ask a Rheumatologist on whether (or why) IV seems to be preferred though.

Also, there is another anti CD-20 mab like Rituximab? it is a "biosimilar" called Truxima, which is FDA approved and may be cheaper where available.

My Hopkins Rheumatologist/Neurologist mentioned that it would also be an effective alternative.

Title: Re: Rituxan
Post by: Sharon on July 25, 2019, 12:59:21 PM
markt- I have never heard of Rituximab being available as sc injection so that's very interesting news to me!
Do you know how often it would need to be administered as an injection (monthly, weekly...)?