Author Topic: Rituximab Users  (Read 1865 times)

markt

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Re: Rituximab Users
« Reply #15 on: February 12, 2018, 06:04:32 AM »
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

markt

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Re: Rituximab Users
« Reply #16 on: March 01, 2018, 08:46:50 AM »
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.

« Last Edit: March 01, 2018, 10:08:01 AM by markt »

Jasper

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Re: Rituximab Users
« Reply #17 on: March 03, 2018, 07:54:53 AM »
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.
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markt

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Re: Rituximab Users
« Reply #18 on: March 05, 2018, 07:30:50 AM »
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.

« Last Edit: March 05, 2018, 07:33:08 AM by markt »

Sharon

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Re: Rituximab Users
« Reply #19 on: March 05, 2018, 11:27:30 AM »
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.
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: Rituximab Users
« Reply #20 on: March 06, 2018, 09:42:36 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. 
« Last Edit: March 06, 2018, 10:33:30 AM by markt »

markt

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Re: Rituximab Users
« Reply #21 on: June 19, 2018, 06:30:03 AM »
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. 

markt

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Re: Rituximab Users
« Reply #22 on: July 08, 2018, 03:55:36 PM »
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.

cccourt1942

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Re: Rituximab Users
« Reply #23 on: July 08, 2018, 04:32:03 PM »
1000 MG?  Do you mean ml?  just askin'
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

markt

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Re: Rituximab Users
« Reply #24 on: August 14, 2018, 09:46:00 AM »
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...
« Last Edit: August 14, 2018, 09:50:36 AM by markt »

Tharrell

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Re: Rituximab Users
« Reply #25 on: August 15, 2018, 10:18:05 AM »
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.
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Kristian

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Re: Rituximab Users
« Reply #26 on: Today at 12:41:58 PM »
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
Sjogren's, Hashimoto's Thyroiditis, Ankylosing Spondylitis, Low Vitamin D, Sciatica down both legs permananently.
Take Enbrel, Synthroid, Oxycodone, Oxymorphone ER, Gabapentin, Raios (long acting prednisone), Vivlodex, Aquaoral, Exovac,  and endless eye drops :-)
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