Author Topic: For those on Rituximab or Orencia  (Read 491 times)

Sharon

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For those on Rituximab or Orencia
« on: February 07, 2019, 02:55:07 PM »
A question for those on Rituximab or Orencia:
Did the use of these biologicals actually lower your ANA levels in blood serum?

(I know not everybody believes that's an indicator of illness activity, but I would expect that if these meds suppress our illness that it should be reflected in antibody levels).
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...

rnathans

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Re: For those on Rituximab or Orencia
« Reply #1 on: February 07, 2019, 09:12:36 PM »
We do not even check mine but they have always been low positive or negative in the past

markt

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Re: For those on Rituximab or Orencia
« Reply #2 on: February 08, 2019, 03:50:49 AM »
https://www.sciencedirect.com/science/article/pii/S1521661617301742

2. Effects of rituximab on B cell hyperactivity
2.1. Systemic markers of B cell hyperactivity

Several biomarkers of B cell activation, including gammaglobulins, autoantibodies (RF, anti-SS-A/Ro, anti-SS-B/La), β2-microglobulin, free light chains and B cell activating factor (BAFF/Blys) have been studied in the context of rituximab treatment in pSS (Fig. 1). A small but significant gradual decrease in total serum IgG after 24 weeks of treatment is seen in larger studies (Table 1) [4], [8], [10]. At the same time, a decrease in RF levels (up to 50%) is observed (Table 1) [4], [6], [10], [11], [12]. Interestingly, Dass et al. found that a non-responder had less reduction in RF after treatment compared with responders [6]. Following B cell repopulation, RF levels rise again and this rise can predict relapse of clinical symptoms [5], [12]. Similar to findings in rheumatoid arthritis (RA), combined presence of RF and disease-specific autoantibodies (anti-SS-A/Ro, anti-SS-B/La) may result in higher disease activity in pSS as well [13]. The mechanism behind this synergistic effect is unknown, but crosslinking and/or stabilization of immune complexes, consisting of autoantigens and autoantibodies, by RF is likely involved. In combination with the finding that higher RF levels seem to increase the risk of lymphoma [14], these data suggest that lowering RF levels by rituximab treatment is of clinical importance, as it may protect against disease progression and/or lymphoma development in pSS.

Several studies assessed the effect of rituximab on anti-SS-A/Ro or anti-SSB/La serum levels in pSS patients. While three studies did not find significant changes in anti-SS-A/Ro or anti-SS-B/La autoantibodies after treatment [7], [15], [16], we found a significant reduction of ? 25% in anti-SS-A/Ro and anti-SS-B/La titers at 16 weeks after treatment (Table 1) [17]. The discrepancy between studies may be explained by differences in study population size, baseline systemic disease activity, time point of measurements, or differences in reliability of the immunoassay, but methods for anti-SS-A/Ro and anti-SS-B/La measurement were not specified in most studies. The observed reduction in autoantibodies is likely a result of decreased generation of short-lived plasma cells, due to depletion of CD20+ precursor cells, and/or direct depletion of CD20-expressing (short-lived) plasma cells. There is evidence that anti-SSA/Ro60 antibody production depends ?at least partially? on clonal turnover of short-lived plasma cells and this may also be true for other autoantibodies [18]. B cell depletion therapy can therefore directly affect autoantibody production in pSS patients.


In summary, most biomarkers of B cell activation in the circulation are decreased by B cell depletion therapy (Fig. 1). Lowering of B cell activation likely contributes to amelioration of systemic disease activity in pSS patients, due to lower levels of autoantibodies and pro-inflammatory cytokines.

I haven't had a ANA Titre myself since starting Rituximab a year ago; not too sure if they even come back up to detectible levels (even though there may be enough to cause clinically relevant symptoms).
« Last Edit: February 08, 2019, 04:15:58 AM by markt »

Sharon

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Re: For those on Rituximab or Orencia
« Reply #3 on: February 11, 2019, 03:52:51 PM »
Thanks for your responses.

I am positive for RNP, RNP-a, APCA, not for anything else though my symptoms and x-rays indicate SS & RA.
I was positive before beginning Orencia and still am.
I know neither biological targets these autoantibodies, but RNP is quite general and indicates "connective tissue disease"
which I assumed would somehow be affected by Orencia.
I guess I'm disappointed with the blood test results.  :-\

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...

markt

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Re: For those on Rituximab or Orencia
« Reply #4 on: February 11, 2019, 04:19:10 PM »
Hmmm

I do know that Rituximab indiscriminately depletes B Cells, which are the origin (along with their plasma cells) of antibodies of all types. 

That's likely why I saw a clinical benefit, a significant lowering of SP1, CA6, TPO, RF, etc.

There are in fact many other antibodies at play in sjogrens / sicca syndrome... antibodies to aquaporin, musacrinic receptors, and some unknown at present.

Rituximab should impede production of them. An added benefit is that it treats lymphomas.
« Last Edit: February 11, 2019, 04:20:51 PM by markt »

Sharon

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Re: For those on Rituximab or Orencia
« Reply #5 on: February 13, 2019, 01:20:00 PM »
I thought T cells (targeted by Orencia) were the origin of antibodies of all types...?
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...

irish

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Re: For those on Rituximab or Orencia
« Reply #6 on: February 14, 2019, 06:05:55 AM »
I don't have any experience with those 2 drugs but have another antibody experience. I have Sjogrens plus I have 4 other autoimmune diseases including Myasthenia gravis. I was put on IVIG back in 2006 and have had a hefty dose once a month for 12 years. IVIG is the product used often for Myasthenia. When I started the IVIG my antistriatted antibody was 61,000. Normal is 0-75 or such. Over several recent years of blood work my antibodies have not changed. However, my symptoms are less.

I don't know if having positive blood work convert to negative is something that can always be expected. I would hope that decrease in symptoms would be the most important thing. So many people with autoimmune disease can have negative blood work and suffer many symptoms. I have followed this site and many articles on autoimmune over the years and I have come to the conclusion that antibodies and blood work, i.e.., positive or negative, are very fickle and very unpredictable. Will be interesting if others have anything to offer on this subject. Irish

Sharon

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Re: For those on Rituximab or Orencia
« Reply #7 on: February 14, 2019, 06:21:38 PM »
Wow irish, your antibody levels are the highest I've come across!  :o
True, symptoms are what matter the most.
The only time my antibodies have gone down was when I was on Prednisone (turned "indeterminate")
and that was the only med that made me feel my best- targeted nearly all of my symptoms except for the sicca.
That's why I suspect the antibody levels do reflect disease activity- at least to some degree.
 
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...

irish

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Re: For those on Rituximab or Orencia
« Reply #8 on: February 14, 2019, 08:03:33 PM »
Thats what my immunologist said about my antibodies back in 2006....Amongst the highest he has seen. I had my Sjogrens blood work checked about 8 years ago or so and one of them had gone back to normal. I don't think he has checked them since as he says you have a diagnosis, you have symptoms and you are being treated and that is about it. My Sjogrens is getting worse in my old age and I can verify that IVIG does not help my Sjogrens. Also, Have been on Methorexate and and Cellcept and I get infections. I have to be happy with how I am.

Hope you improve cause summer is a coming. Good luck Irish

ktfabian

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Re: For those on Rituximab or Orencia
« Reply #9 on: March 07, 2019, 09:55:31 PM »
I took Rituxamab for about 7 years when we started noticing my IgM levels were dropping signicificantly. The doctor sent me to an immunologist, which took a little while to get in and when I did, he stopped the Rituxan. The immunologist wanted me off the Rituxan for a year to see if my numbers came up on their own. Instead, my IgG subclass numbers started to drop, and I ended up needed IVIG once a month to bring my numbers back up. I've been on it about 7 months and things were starting to improve, but I missed 3 months because my gastroparesis was acting up and I couldn't get the IV while I was vomitting, so my numbers are down again. It's always something, isn't it??

If there's a witch out there, I could use a spell for good health right now, thanks!
Tracy
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55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

markt

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Re: For those on Rituximab or Orencia
« Reply #10 on: March 08, 2019, 11:57:15 AM »
.

ktfabian

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Re: For those on Rituximab or Orencia
« Reply #11 on: March 09, 2019, 05:32:57 PM »
I should say, the 7 years I was on Rituxan were the better years I've had with my Sjogren's. I still had flares, but they weren't as bad as they get now. And the overall dryness is much worse now than it was when I was on Rituxan. But for me, the biggest relief was that, with Rituxan, I didn't get the daily, disabling headaches that I got without it.

We really didn't keep track of my numbers to the degree that you're discussing, though my doctor, a Sjogren's specialist in Philadelphia who said he only used Rituxan in his more severe cases, did blood work regularly and I'm sure he was watching everything that needed to be watched. But he agreed that the Rituxan was making a big difference in my Sjogren's. Unfortunately, I started having frequent sinus infections, bronchitis and even a round of pneumonia, and it became too difficult to get the Rituxan, so I had to stop.

To this day, my Rheumatologist and my Immunologist can't say for sure that the Rituxan caused the drop in my immune system. I've developed a number of other problems that no one can say for sure are related to my Sjogren's, they just are.

I do know that I missed the Rituxan for quite  while when the headaches came back. Fortunately, I've found a really good family doctor who won't quit until she finds a solution and she found someone who got the headaches under control most days.

I didn't want anyone to think I was being flippant about the subject. Deciding to take Rituxan was one of the hardest decisions I'd ever made because my dad had died about a year earlier from and experimental chemotherapy and I wondered if something  like that could happen to me.

I hope that Rituxan is doing all it can for all who take it.
Tracy
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55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.