Author Topic: Rituximab Users  (Read 2189 times)

markt

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Rituximab Users
« on: January 04, 2018, 04:44:04 AM »
Hi all, good morning

I wanted to reach out to folks using Rituximab as part of their treatment regimen... basically I am trying to gather a consensus on how safe (relatively speaking) it is to use... and if it required much change to your daily life, with regards to limiting exposure to people who may be sick, traveling, etc. 

My team at Johns Hopkins recommend I go this route and try Rituximab... so I am trying to talk myself into it, as I am a young guy at 31 with two girls to raise.  My local Rheumatologist in Jacksonville doesn't have much good to say about Rituximab and has treated it as a non option to date... until conferring with the JH Rheumatology team. 

That said... I've searched the forum and from anecdotal experience  people seem to do fine and live their lives.  Folks with RA, UC, SLE also seem to do well with their Biologic treatment options.  Any who, while not ideal, people do it... just seeing what others that have been through it think.

Deb 27

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Re: Rituximab Users
« Reply #1 on: January 05, 2018, 01:35:22 PM »
Hi mark, did you get a diagnosis of Sjogrens? If you don't mine my asking, what were the extent of  your symptoms and what other medications did they try for you? Do you have any other autoimmune conditions? I see you are in Jacksonville, did you try the Mayo Clinic?

I am sorry I don't have any experience with a biologic but I am curious when and why rheumatologists decide to go to that medication. I think a few people here are on biologics, but not many. It might take a while to get a reply.

I used to go to Mayo Clinic in Jacksonville but my rheumatologist there retired. I really liked him. He diagnosed my RA. I didn't get diagnosed with Sjogrens until I moved away from Jacksonville and went to another rheumatologist. We will be moving back to the Jax area at some point in time. I saw another rheumy at Mayo and did not like him at all. I think I'll try another practice in Jax.

Despite having RA and SJS, I am just on plaquenil.... I did have to take prednisone when first diagnosed with RA. I don't think  most rheumatologists take SJS seriously enough to move people to biologics. Not sure if many clinical trials have been done.

I hope you get some more responses. Good luck to you.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

vrystaat

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Re: Rituximab Users
« Reply #2 on: January 05, 2018, 07:31:56 PM »
My Rheumatologist has asked me to consider doing a course of Retuxan  for my severe SS and Polymyositis.
I have failed Cellcept (due to many infections), Imuran (had a complication), & Prednisone (repeated acute sinusitis).
Methotrexate and IVIG do not help me. Imuran gave me skin rash, itching, hives, swelling of the face, lips, & tongue, and confusion. Maybe also severe stomach pain.
The Rheumatologist has told me that with all these infections that I get, it is likely that Retuxan will cause worse infections. But I'm going to give it a try, because it's the last drug that I could try.
I have also been recommended an intense course of IVIG, because I only received one course over 5 days, & it is said that this is not enough. (Actual dose of IVIG was 2 grams per kilogram divided into five doses and 400mg/kg is infused daily for 5 days). The IVIG that I could get is repeated every 4 weeks for five or more regimes (depending on my results).
Sounds like between the Devil and the Deep Blue Sea to me.
« Last Edit: January 06, 2018, 06:20:53 PM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

rnathans

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Re: Rituximab Users
« Reply #3 on: January 07, 2018, 08:23:52 PM »
Do hope you will come back and tell us your symptoms and treatment history. I have done one course of rituxan thus far ( 2 infusions 2 weeks apart) and expect to repeat this after 6 months. I am on it mostly to treat neuro symptoms from my Sjogrens. It has helped my neuromuscular symptoms a great deal. I am also on it for gastroparesis caused by autonomic neuropathy from the Sjogrens. It has had only a slight impact thus far. No worsening but no real improvement. I have been led to believe this takes longer to improve and usually a second round.

markt

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Re: Rituximab Users
« Reply #4 on: January 08, 2018, 07:32:32 AM »
Hi guys/ladies,

Thank you for the replies.  Deb, yep, I was diagnosed last month by Johns Hopkins via lip biopsy (focal score of .37/1.00, but showing typical lymphocytic sialadenitis) and pathology (albeit with negative Rho, La, and RNP antibodies).  I was highly positive for SP-1 and CA-6 antibodies associated with early SS.  My C4 (indicative of inflammatory blood disorders) also came back at the bottom of the range.  My symptoms are limited to Sicca (no basal tears, little spit, periodic thrush, and dry flakey skin).  I have been fortunate to miss out on the fatigue and neuropathy so far. That said, I am doing relatively well treating my symptoms, which is why my local Rheum is hesitant to start the Rituximab (even if it was recommended by the Johns Hopkins team). 

It was ordered/recommended by my JH team because its one of two biologics on the present market that can stand on clinical data showing it to affect Sjogrens related disease activity... with "relative" safety.  Additionally, anecdotal experiences that demonstrated therapeutic benefit for Sjogrens patients (Sicca in particular) were shared by my Rheumatologist.  He seems to think it would help... even though some clearly benefit from it more than others depending on age and time since disease diagnosis, disease activity levels, extra-glandular manifestations, residual capacity/health of glands, etc.

Other medications I am on are pretty standard: plaquenil, cymbalta, cevimelline, and Omega-3 supplements.  Also, on a no-sugar/gluten diet. 
I will be sure to share my experience with you all as I get further down this road, hopefully some others can benefit from it and get their questions answered as well!

Regards,

Mark
« Last Edit: August 15, 2018, 11:30:47 AM by markt »

Deb 27

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Re: Rituximab Users
« Reply #5 on: January 10, 2018, 03:35:54 PM »
 I got diagnosed with a lip biopsy as well. I had a weak ANA, speckled pattern and a high sed rate but the ANA went negative after the first year of treatment.  It sounds like the folks at Hopkins are experts, but it's still a difficult decision.   Let us know how it goes!! Best of luck to you.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

markt

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Re: Rituximab Users
« Reply #6 on: January 11, 2018, 04:34:42 AM »
My hope is that folks electing for Rituxan only have to do it for the short term... it sounds like the next 5 years may actually yield a succession of several Biologic Treatments aimed at Sjogrens.

I have been meaning to write my Rheumatologist at JH to ask him for his take on experimental medications currently being trialed, and when/how likely some are to make it on the market.  As a research institution/Sjogrens clinic, I suppose they have a "pulse" on the pharmaceutical industry and can speak to that for us.  I'll pass on what they can share.

vrystaat

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Re: Rituximab Users
« Reply #7 on: January 11, 2018, 10:39:41 AM »
I had a follow-up with my Rheumatologist at a large Teaching Hospital in California) 1 week ago.
He told me something more: that Physicians don't like to treat SS, because there is usually little treatment available, and the multi-system involvement is always a challenge for the treating Physician. I agree with him.
But he also told me, regarding Polymyositis (and also Sjögrens Syndrome) that IVIG was not favored at his Institution, because it's effects are short-lived and it's basically only a mild anti-inflammatory. Regarding Retuxan, he says it's far from perfect and has far more side-effects than Cellcept (for example, infections).
So there you have it from the horse's mouth, and it's back to the drawing board. Sorry for the downer of a message, but we need to know the truth.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

A Mom on Spin

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Re: Rituximab Users
« Reply #8 on: January 11, 2018, 12:41:14 PM »
Mark,

I apologize for not seeing this earlier.

I just finished my second round of Rituxan infusions- six months after the last set.  Mine was also suggested by JH.  I suppose I am ?lucky? because they also discover sero-positive lupus and RA so I had no issues with insurance coverage.   The first infusions took about three months to work for me, but that?s not unusual.  It was my understanding that the infusions were given to treat my joint pain and eventually it did.  The positive effects did wear off after month 5 or so.  I?m hoping for great improvement from these second infusions and think I?m already feeling a difference since I have weaned down to 2 1/2 msg of prednisone and my joints are feeling okay.

If improvement in sicca symptoms is expected as an off-label benefit, I haven?t experienced that.  Nor have I had any improvement in my PN.  Hopkins wants me to have IVIG infusions for that but insurance has declined because it?s small fiber neuropathy, not CIDP.  No improvement at all in my overwhelming fatigue, but I didn?t expect that either.  I will take any help I can get, and am satisfied enough with the improvement in my joint pain to continue, since the only other thing which provides relief is prednisone, and I can?t stay on that forever.

I am surprised that they would take such a huge leap to Rituxan when your symptoms seem rather moderate.   Assuming your local rheum hasn?t tried methotrexate, etc because you are still of child producing years?  Even as a male, you have to explore all of these drugs because they stay in your system for a long time.

As far as being immunosuppressive goes, it?s my understanding that it?s not as bad as some other drugs on that front.  I just take ordinary precautions (and this is me, who ended up with septic shock from Imuran last year.)

I hope I?ve answered your questions as they pertain to my experience, anyway.

Liz
www.mysjogrenslife.blogspot.com
https://www.amazon.com/author/lizwilkey
Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

Sharon

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Re: Rituximab Users
« Reply #9 on: January 11, 2018, 04:57:40 PM »
I'd just like to chime in here that I am on one of the biologicals
currently in the final trial stages for SS: Abatacept (Orencia).
It has already been approved for RA so I am taking it under that label.
I cannot compare it to Rituxmab since I have only tried Orencia, but it's an alternative you may
want to consider. It has helped me with severe joint and tendon pain, GI issues, brain fog and fatigue.
You can take it in weekly injections and stop immediately if you have side effects.


Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

A Mom on Spin

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Re: Rituximab Users
« Reply #10 on: January 11, 2018, 05:50:24 PM »
My daughter was also on Orencia for a few years before she was forced onto new insurance.  I?m sure she would echo Sharon?s statements about its effectiveness regarding her joint and tendon pain. 

She has lupus, however, not SS.
www.mysjogrenslife.blogspot.com
https://www.amazon.com/author/lizwilkey
Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

markt

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Re: Rituximab Users
« Reply #11 on: January 12, 2018, 05:55:08 AM »
Liz / Sharon,

Thank you both for your perspectives!  I think I have read enough shared by others here (and elsewhere) to be at ease with at least trying it, as was suggested by my Rheumatologist.  From what I gather, the therapeutic benefits of Rituxan really are different from person to person, just as are our symptoms/experience with Sjogrens. 

Here's to finding what works... even if it's a little bit. I will let you all know how it goes.

Regards,

Mark

P.S.  I had my two girls right before my AI disease came on in July 17. No more babies for me, I am done at two!  ;D  So MTX and other drugs aren't really a concern.  I don't have joint pain or arthritic symptoms, nor blood work to suggest that may developing (not yet anyways).  I guess that's why my local Rheum is okay with just going with the Plaquenil.
« Last Edit: January 12, 2018, 06:01:39 AM by markt »

anastasia

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Re: Rituximab Users
« Reply #12 on: January 12, 2018, 01:49:51 PM »
I have not posted in a while.  I also was treated with Rituxan in August, 2016.  I had no difficulty with the infusions and was pleased with the benefit.  Specifically, I was able to return to work after a semester absence and the symptoms of neuropathy and fatigue greatly improved.  I had improved energy and felt well - not my pre-illness state, but I was pleased enough, given how I felt when diagnosed.
Within 4 months of treatment, my symptoms began to reemerge.  I was retreated with a single dose of Rituxan in February of 2017.  It had zero benefit.  I also developed a facial rash subsequent to the treatment.  That was later confirmed as rosacea. 
I was then treated with methotrexate, prednisone, and Rituxan again in July/August, 2017.  No benefit.  Since then, I have taken methotrexate (no benefit) and occasional prednisone.  I was recently approved for IVIG and did 3 treatments on consecutive days in December.
So I'm still hoping for the miracle treatment.  I was really disappointed to have had the follow up experience with Rituxan that I did.  It has been reported in the literature that some people have this response and develop resistance to it.  However, it was easy to tolerate and I did not ever come down with any infection, in spite of working in a high school (a cesspool of germs!)  So my advice would be to try it.  It has a very good safety record and may just be the miracle you're looking for.  Good luck!

Wxeye

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Re: Rituximab Users
« Reply #13 on: January 14, 2018, 08:57:55 AM »
Hi.  I am new to these boards.  Im a 61 year old male.  Diagnosed with Sjogren's thru lip biopsy at Mass General. Sjogren's is totally debilitating for me.  Mostly neurologic pain, fatigue and an overwhelming sense of malaise (which is not really the right word since mine is so intense).  Some eye tearing and pain but no mouth dryness. So many strange symptoms that come and go.  I sometimes wonder if I am misdiagnosed but have been to so many doctors and no one could figure it out.  Anyhow they put me on Rituxan infusions.  Sets of 2's, 6 months apart.  Tried it for 4 rounds over the past 2 years.  It did nothing for me.  Now they want to try Orencia.  I finally got insurance approval but have not started it since have to take care of a skin cancer Basil Cell first.  Hope Orencia will offer some relieve, totally miserable on a daily basis.

Sharon

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Re: Rituximab Users
« Reply #14 on: January 14, 2018, 01:08:24 PM »
Wxeye- Orencia is definitely worth a try! I know exactlly what you mean by "malaise" and it has really helped me with that, fatigue and more as I wrote above. However, it has not helped my sicca symptoms (dryness) at all.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...