Rituximab iv and intrathecal with valtrex

[LR1234]

Hey Anon,
Hope you are feeling better x
I don't think it was a relapse after all but I concerned what it was/is:/
Ive got an issue with my rib/lung still that feels like I have a rock in it. Im not sure if its altered sensation or some sort of growth or cracked rib or something. I not in pain but it just feels weird still. Someone suggested pleurisy or some sort of inflammation. I have/had a form to go and have x ray (misplaced it!) so need to find it and have it checked.
Im still on the acyclovir and still doing well (except the rib thing) although having what feels like creeping in incontinence issues in both parts (not unable to hold but urgency def an issue) feels like it may be progressing.....
Got blood count back today for B Cells Range 100-5
00 mine are 55 so not sure what that means in terms of redosing etc.
Any ideas???
Chat soon:)

[Anonymoose]

Oh good, not a relapse!! Maybe its some sort of infection? That could cause the lung and incontinence issues. I hope you find answers quickly. Your B cells are still low after this long? Wow. I can't decide if that's a good or bad thing. What does your neuro say?

I've stopped herxing on the anti-fungals but the new left hand numbness is hanging around. I'm kicking around the idea of going back on diflucan at a higher dose to see if that does the trick. Maybe it reaches something the other stuff can't?

Let us know what comes of the lung/rib investigation.

[LR1234]

Hey Anon,
Haven't heard back from Neuro yet about B cells.....so we will see. Its weird I have felt MS free this last year but don't know if the B cells taking time to come back is good or bad???
Good luck with the diflucan...that stuff is strong, I tried it a while back, managed one tab a month 150mg. I hope it helps you. I also hope the numbness goes.
I am seeing my haemotologist tomorrow so will see what he has to say.

[Anonymoose]

Hi LR,

How did you react to diflucan? I was taking 200mg/day for two months and didn't have any negative reaction to it at all. It's mostly fungistatic so shouldn't cause a die off effect for fungi. It does have some effect on Lyme co-infections and other infections (coccisomethingorother) that might cause herxing. Maybe there's a clue for you in there?

Good luck at your appt today.

[LR1234]

Hey anon,
B cells going up.....I don't know the exact number but they are on the up
Still feel ok ish, starting to feel a it fluey at the moment and general malaise but loads of illnesses still hitting our household but could be the ms resurfacing
How you doing? X

[Anonymoose]

Hi LR,

I'm up and down in a non-MS way...still messing around with candida and have started another, longer round of fluconazole and some other stuff so bumps are to be expected. I think I'm still doing well ms-wise...at least I feel incredible when the candida is under control and I'm not herxing.

I hope those germs clear out of your life soon...they just have to be the cause of your fatigue/flu-ishness. (Positive thinking...placebo effect...two of my favorite things! Now I want to write the ms version of that sound of music tune...)

Be well!

[LR1234]

Hey,
Just checking in....Im still feeling really well:) Eyes aren't quite as great as they were but are by no means as worse as they were pre rituxan. My doses of rituxan were the 18th March and 2nd April 2014 so I am over a year out. (I had 1500mg) I am planning to go in next week or week after for a single dose of 1000mg to see if thats enough to wipe out my B cells again for another year. (If its not I will do the extra 500mg again (but for cost wise Im really hoping I don't have to as it means a second day paying for a hospital privately.) My fatigue is still normal....I still feel well. My bladder and bowel are a bit up and down still. (I get the urge to go then I have to run like a mad woman sometimes to the loo) but hey ho MS I'm sure is still doing its nasty work somewhere even if I don't feel ill day to day. Im still on 800mg acyclovir daily...copaxone Ive let slip quite a bit.
How you doing anon?

I did the diflucan again 150mg, didn't notice anything so not sure if thats a good or bad sign...

P.S sorry for bad punctuation, my computer does not auto correct for some reason and I can't be bothered to add apostrophe's in everywhere!;)

[Anonymoose]

Hi LR,
Glad to hear you are still doing well. Good luck with the next infusion(s).

I've hopped off course and am following Buhners Lyme and co-infection protocols to see if I can make that weird left hand thing go away that way. After a few weeks herxing (and a really bad cold I caught from my son), I've been doing great. Left hand seems a bit better but not 100%. I've been outside doing heavy yardwork (ripping out neglected landscaping) every day- all day for a week and the only reason I've had to slow down is due to a bad sunburn (I'll never get used to the sun here!). I'm also sleeping better.

I'm a bit more than a year and a half out. All of my initial improvements from rituxan have held. It seems like something else is the root of my difficulties since. I think if my energy takes a nose dive or I experience one of my normal relapses, I'll go for another round of rituxan.

Be well!

[Anonymoose]

Updating this for those still or newly interested in Rituxan...

I had first post Rituxan MRI (no gadolinium) in August. I’ve still not seen the film but read the MRI report yesterday during my first infusion of rituxan round II. The radiology report said “very mildly progressing disease over interval (2013-2018).” I have two small new lesions. For comparison, I believe my neuro said I developed 3-5 new lesions between 2012 and 2013. No enlarged ventricles (does that mean no atrophy?) or anything else noteworthy. My biggest lesion is old and 8-9mm, pearl-size. I guess that’s a pretty good report card but MRIs don’t show everything. Fatigue is still biggest issue. I still can’t type without a million errors. And my memory sometimes fails me (attributable to one of my new lesions and/or just getting old!).

I’m going lighter with round II. Off label rituxan is ~$1k/100mg. Then add infusion ($179/infusion) and doctor fees for LPs (no idea how that breaks down but I should have been a doctor)...

Week 1: 680iv 20it
Week 2: 80iv 20it
Week 3: 680iv 20it
Week 4: 80iv 20it

I don’t feel anywhere near as wiped out as I recall feeling after week 1 last time. The day after 1st infusion, I dragged a few boxes up and down stairs, assembled a bed, hung curtains, did laundry, made some “business” calls, and took some naps. My appetite is normal too. Weird. I wonder if it’s because it isn’t working or if it’s because I don’t have a lot of b-cells in me brain to kill off. Or if it’s because I’ve fully recovered from my vegan condition. Who knows? Oh. I should be getting CSF tested too so I’ll have those results to compare with 2013’s results. Not sure but suspect yesterday was a dry tap or was too contaminated w blood.

Just in case anyone is looking for a neuro to do this for them...mine is retiring so I’m looking for a new neuro too.

Be well.

[Anonymoose]

CSF results are in...high IgG, normal albumin, high IgG/albumin ratio, >12 ocbs unique to CSF (last test was 9 and I think the lab dudes should be able to count higher than 12), and high mbp according to a yet to be proven test (the normal range for it allows for 1.2ng/ml mbp. It’s normal to have mbp in CSF?) I don’t know if the IT Rituxan I had a week before CSF collection could alter results for better or for worse or at all. I’m filing all of that in my “Not enough knowledge to interpret the meaning of this yet. Read again in 5 years” file (aka the “OH SHIT!” file).

I’ve not experienced any sensory weirdness or sick feeling at all yet. The mind numbing fatigue and general weakness hit last night and haven’t left. Had third infusion/injection this morning. Off to take some iron cuz this ain’t my first rodeo.

Will post again if anything interesting happens.

Be well.

[LR1234]

Just to update, I went ahead in 2014 taking Rituximab I.V plus I supplement with acyclovir if I feel a bit MSy but I have to say Rituximab has been a life saver for me. I don’t suffer with fatigue or symptoms day to day other than the damage already done from optic neuritis. My MRIs are stable too. I’m not sure if I have slight progression with incontinence issues as they do plague me from time to time so I’m not entirely sure if progression has totally been halted but I live my life almost 100% normally (have the odd hard data but I have two kids under 5!)

[Anonymoose]

I always worry that people who go silent online have developed significantly worse symptoms even though they could just as easily be doing better and are simply busy living life.

So, I’m just posting to update for those considering cd20 mabs, I’m doing great (physically/mentally-no new mris) and have just been busy w (crazy) life since my last round of rituxan. I caught every bug I could for about 4 months following infusions but aside from some fatigue it was a breeze relative to 2013 round.

LR1234-so happy to see you’re still thriving too. Two kids under five?! You win the crazy life contest. Do you do infusions every 6 months? I stay away from the antivirals but do pop a clemastine fumarate (still available w prescription) if I feel MS’y at all.

I’m planning my next rituxan infusions/hopefully intrathecal injections for the fall of 2022. Until then, assume all is well unless I post otherwise.

Happy holidays and be well!

[jimmylegs]

i imagine all readers who need to know, do. for whatever it might be worth:

Infection Risks Among Patients With Multiple Sclerosis Treated With Fingolimod, Natalizumab, Rituximab, and Injectable Therapies (Oct 2019)
https://jamanetwork.com/journals/jamane ... ct/2752284
"...Conclusions and Relevance Patients with MS are at a generally increased risk of infections, and this differs by treatment. The rate of infections was lowest with interferon beta and GA; among newer treatments, off-label use of rituximab was associated with the highest rate of serious infections. The different risk profiles should inform the risk-benefit assessments of these treatments."

[Anonymoose]

i imagine all readers who need to know, do. for whatever it might be worth:

Infection Risks Among Patients With Multiple Sclerosis Treated With Fingolimod, Natalizumab, Rituximab, and Injectable Therapies (Oct 2019)
https://jamanetwork.com/journals/jamane ... ct/2752284
"...Conclusions and Relevance Patients with MS are at a generally increased risk of infections, and this differs by treatment. The rate of infections was lowest with interferon beta and GA; among newer treatments, off-label use of rituximab was associated with the highest rate of serious infections. The different risk profiles should inform the risk-benefit assessments of these treatments."

Barts-ms group, multiple-sclerosis-research.org, has been posting loads on MS treatments and covid 19 risk. They do NOT believe cd20 depleters are high-risk meds in current pandemic.

Their latest relevant post links to this 60 person on cd20 mabs review.

https://www.msard-journal.com/article/S ... 3/fulltext

There are many more related posts to be found on their main blog and secondary blog dedicated solely to pandemic.

That said, we really don’t have a grasp of what covid-19 does in the longer term. The newly arising complications in healthy children, whom we thought were safe even w covid, is indicative of this lack of understanding. So, I guess, read a lot and follow your gut.

[Anonymoose]

Just posting a quick update. I’m still alive and doing quite well. I’ve not noticed any progression at all. If anything, I’ve experienced improvement (probably due to the purging of a chronic stressor).

I likely won’t be able to continue w the iv-it rituxan protocol as my former neuro is deep into retirement and his replacement is unwilling to administer it. I’ve half-heartedly sniffed around for a neuro willing to carry on the torch and haven’t had any luck. New guy also won’t do the more affordable cladribine injections in place of the ridiculously priced mavenclad. <-I haven’t looked. Is it even worse w/recent inflation?

So, I guess we will get to see how this plays out without any “boosters.” I’m crossing my fingers that something new, a safe, CNS penetrant b-cell depleter or ATA188, becomes widely available to all PWMS in next few years.

Happy New Year and be well!