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.
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.
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.
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.
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
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.
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.
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.
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
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.
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.
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.
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!
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.
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.
Hi, I was able to receive the first of my Rituximab infusions for Sjogrens at Johns Hopkins this last week. Overall it was pretty well tolerated, granted it's only been 3 days since treatment. The staff/nurses at the clinic were great. I will check back in after a while and share my experiences with it for those that are also considering this.
Regards,
Mark
I just wanted to check-in and share the following update now that several weeks have elapsed since initial infusion of Rituximab. Keep in mind, that this is just my anecdotal experience, not verified with any scientific methodology.
That said, I can tell that my saliva flow and quality is vastly improved. If you were to ask in what way, I would say that I am no longer constantly thinking about keeping my mouth closed to retain moisture and breathing through my nose, or when I am going to swallow next, or when to take my next Cevimelline (even before bed so I don't wake up with near choking dryness). Whatsmore, my saliva is of a normal, satisfyingly thick consistency. Dare I say, much like normal! It's that same kind of satisfying as being able to breathe in a full breath of air!
I have also noticed an improvement in my skin and eye-lids. My skin is no longer tight, flakey or distressed looking. It is mostly normal feeling, and I even get a bit of occasional typical acne... so my skin is trying to produce lipids/oil again near follicles. My eye-lashes are no longer thin/frail looking and tending to fall out due to the Sjogrens induced Blepharitis that I have experienced. Rather, they look very normal. At my last Ophthalmologist appointment, my Dr. noted that I have 18 and 20 healthy lower lid glands (L/R respectively) producing Grade-2 meibum... but still a notable aqueous tear deficiency.
Beyond that, I cannot say that I have noticed improvement in tear film sufficiency/ocular dryness. I am still heavily reliant on the Restasis/ointment combo, or moisture retaining bandage lens contacts. I will see how that does with a little more time.
So... I would say yes, the Rituximab appears to be alleviating some of my Sjogrens induced Sicca symptoms. I cannot speak to arthritic symptoms, fatigue, or the neuropathy that some folks have described. Hopefully this will prevent the onset of such symptoms.
A little about my experience with Sjogrens. I am a 31 year old Naval Officer. I had a very quick, painful, unexpected onset of Sjogrens induced Sicca... it took me away from work for two months. There was nothing slow at all about progression of my immune response. I was prescribed the normal low-risk medications from my Rheum before getting the Dx confirmed at Johns Hopkins (at the 5 month mark from symptom onset). My theory is that the quick turnaround and treatment with Rituximab has benefited me such that I still have a lot of glandular capacity/functionality reserved.
So, in summary... Rituximab may not benefit everyone in the same way for different reasons. There are a lot of ACR abstracts out there explaining why. I am thanking the Lord for the bit of mercy I have received, and the medical professionals fighting for me/with me. Try Rituximab... get your team to fight for it and work with your Insurance Provider. You have nothing to lose until better options come along to bridge the GIANT deficit in the Sjogrens treatment gap.
I have been on Rituximab since February 2016.
I receive a set of 2 infusions every 24 weeks so I have had a total of 10 infusions (or 5 sets of infusions).
I have had vast improvement in fatigue levels, energy levels, joint pain, saliva flow, peripheral neuropathy symptoms, and cognitive function.
My opthamologist says my eyes are the best he has ever seen them.
Rituximab has been a major help for me. It has given me back a life. I am not back to pre-sjogren's levels, but at least I can function and have a life now.
I had tried Cellcept and Imuran in the past. I had terrible side effects from both and had to stop them. Plus they did not help except Cellcept did take my joint pain away.
I find Rituximab easy to take and have no side effects from it except for increased vulnerability to infections. For me, the benefits greatly outweigh the risks.
Mark, it is quite possible that you have seen remarkable improvement in your saliva flow because you don't have as much damage to your salivary glands as some people have. Hopefully Rituximab will prevent progression of the disease in you.
I think doctors need to be more proactive with treating Sjogren's. Currently they wait until we have major damage, often irreversible, until they decide maybe they should treat us, if they decide to treat us at all. Plus, they tend to treat fatigue and cognitive dysfunction as nuisances. They do not realize how disabling these manifestations of Sjogren's are. Even the new guidelines state that the only recommended treatment for Sjogren's fatigue is exercise, which is a joke and clearly demonstrates they have no understanding whatsoever of Sjogren's fatigue.
They need to be proactive and treat us the same way they treat RA, aggressively and at diagnosis.
Jasper, I cannot say that I know you, but I wanted to thank you for sharing your experiences.
I read your posts a while back; your account (along with my Rheum's suggestion and other patient accounts) encouraged me to at least try immunomodulatory therapy via Rituxan. There are not a lot of detailed patient experiences out there to be read on the medication (with regards to Sjogrens anyways). So those of us who do post our experiences create valuable reference points for others to make their treatment decisions.
I drafted up my own clinical summary and emailed it to my team for their reference as another data point in treating Sjogrens. Medical professionals NEED feedback from us just as much. I think that is partly why the ACR hasn't quite adopted Rituxan as a treatment. That, and the fact that it is very expensive (12K per infusion/24K every 6 months). Business managers at each of the practices are very sensitive to the fact that the major insurers are not likely to fully reimburse any claims that they submit (for folks like you and me with Sjogrens); this is because Sjogrens is an "off label" diagnosis for Rituxan prescription. Whether it get's prescribed comes down to money being the main consideration period-end-dot, versus it just not having a history of demonstrating efficacy in Sjogrens. Well, that and what your level of disease activity is and how well your symptoms are being managed with first line prescriptions.
Thank you markt for your update and to Jasper as well for inspiring some people here to try Rituximab.
Woderful to hear something out there helps with the sicca symptoms on the systemic level (not just symptomatic remedies).
I'm on Orencia which has helped with the pain, fatigue, neuropathy aspects but not at all with the sicca or MCS I developed with the SS. I believe the Orencia saved me from severe physical disability which is saying A LOT! These biological treatments can save us from so much suffering and further deterioration.
It's a shame not everyone has the possibility of trying them.
Hopefully we can raise awareness to their effectiveness so they're more readily available to others
in the future.
Quote from: Jasper on March 03, 2018, 07:54:53 AM
They need to be proactive and treat us the same way they treat RA, aggressively and at diagnosis.
^ This time's a million... it is a bad Joke how Sjogrens patients are treated. One Rheum told me, "we usually give Sjogrens patients a pat on the back and send them on their way with encouragement." I wish I could re-live that moment and thoroughly dress him (Dr. Kim at Baptist in Jax) down (Sailor talk for berating someone), but I couldn't pick my jaw up off the floor from disbelief of how unprofessional/uncaring of a comment he could make. I hope the SSF and their CEO hear of more accounts like yours and mine. We need someone advocating for us, because a lot of practitioners do not get it. The SJS treatment guidelines need to be revised, and practitioners need to be at the very least willing to submit claims for Rituxan when warranted (Baptist in Jacksonville was not, because they were afraid of not being reimbursed and wasting their time). Mine ended up being covered. It's disheartening how unwilling people are to go out of their way for us sometimes.
Update:
Starting round two of Rituximab this Friday... the first of two 1000mg infusions. This is quite timely, as I am becoming more symptomatic lately (dry mucosa... trouble clearing throat and swallowing kind of symptoms). I have been able to do without Cevimelline for a few months, but started taking it again in the interim.
On the positive side, my very seasoned DMD saw me this morning and remarked that for a Sjogrens patient, my oral tissues looked great relative to others and my minor salivary glands seem to be doing good work for me.
On the negative side, being immune suppressed caused recurring glossitis/glossidemia (prone to irritating oral coating of tongue). Now I know to treat it with Fluconazole / Clotrimazole as needed. But if this is the means by which I have to preserve salivary gland/unit function... it is totally worth it.
Update since last post: several weeks have elapsed since the infusion... I am no longer waking up with dry mouth, throat, MALT tissues,etc. I feel rather satiated and have no issue swallowing... Backing off cevemelline slowly, as i actually feel as if i am going to slobber a bit. My eyes are still pretty dry overall, which i am managing with restasis, drops, and contacts.
The bacterial overgrowth and irritation on my tongue from having mmune suppressed biome is returning. I think its less of a factor as i discovered apple cider vinegar, cinnamon oil, and cocanut oil, along with anti Candida diet are keeping that down.
So far, my experience with rituximab is consistant with research articles i have read... And no, i do not feel sickly or near death on it. Quietthe opposite, but i am making common sense decisions to promote my health.
1000 MG? Do you mean ml? just askin'
ccc
Thought I'd follow up, as I have just finished my second set of infusions.
Leading up to that week, I had severe dryness begin to set in, becoming more and more dependent on Cevimelline 30mg for daily function (3x daily). This is to clear my throat, swallow, etc.
Less than one week after my second infusion, I feel as if there is nothing wrong with my basal Saliva production... I am already back off of the Cevimeline. Part of me was scared that the infiltrate and dryness may not subside this time. But sure enough... it has eased off and I feel like I can breathe and swallow. It's bizarre, and I suppose confirms my lymphoproliferative / B-Cell driven disease.
On another note, my skin is improving as well... I was basically flaking and shedding going into the week of my infusion.
Unfortunately, I can tell that my side effect is also returning (glossitis and discoloration on the back of my tongue... which really hurts.) I am using alcohol free anti-septic mouthwashes, apple cider vinegar, coconut oil, etc. to stay ahead of it and prevent infection.
Just wanted to leave this as a note for folks considering Rituximab, who are wondering what happens after the first treatment...
I'm glad you are keeping us posted on your progress! I have asked my rheumy about a year ago about rituximab and her reply was that she wasn't ready to kill me yet! I guess that was a defenitive no, ain't gonna happen. Next week I'm going to bring it up again. My symptoms with sjogren's, mctd, Isaac's and motility issues are steadily getting worse! I am beyond frustrated! I hear from other Isaac's patients that it definitely helps with their cramping and fasciculations. It also seems to help with slow motility. I wonder how it would perform for achalasia? That's my next research project. I'm just tired of getting worse systemically and nothing is changing treatment wise.
I am also a younger guy at 38 and have been dealing with Sjogren's and additional auto-immune issues for about 6 years. I have not tried Rituximab yet, but have tried 5 different biologics so far and had semi-positive results. I think they have helped to stop things from getting worse as I was on a pretty steep slope downwards and was sleeping all day everyday and could not function. I am now more functional and my fatigue has greatly improved, I had also developed vasculitis and the biolgics seem to totally reverse that; if I stop it comes back within two months.
I would recommend trying the biologics. Some people have absolutely amazing responses and get almost total remission, having seen it on other people I know being treated. None of my Sicca symptoms have improved so far, but I still have hope as there are a lot of biologics left to try. Currently I am on Cossentyx and jsut doubled the dose. I am extra careful not to be around sick people, you will likely need to be very careful with two school age girls, and or talk to your primary care doctor about having anti-biotics on hand just in case. Supposedly simple infection will explode like wildfire while on the biologics, but the improvement in quality is more than worth the risk. Most biologics take 4-6 months to twll if they are working or not.
Good luck and please keep us updated how it works for you. I am sure everyone will want to try if you get a major improvement. :-)
Kris