Rituximab Therapy

[Suebee]

Lmh and all, I share my personal experience to help others understand my personal decision to take orcevous. I feel as a patient that I should weigh DMD choice risk benefits based on my circumstances so long as I fully understand issues and use neuro as a guide. SPMS is usually determined in retrospect based on clinical course, but there are some basic understandings (mri new lesion load, 15-20 years after diagnosis, brain atrophy, and specific performance parameters on cognitive testing)
I have no active lesions But new technique identified previously not seen lesions. My current mri shows lesions but not horrible. This is contrary to My initial attack, which was aggressive and long, leaving me homebound with caregivers. That initial lesion area over past 15 yrs shows disproportionate atrophy as does certain cortical.area not equivalent to my age. My mother died young from progressive ms. I have been unemployed more than employed. Neurocognitive testing showed some deficits consistent with What is commonly seen in some MS patients. I'm a cautious and risk adverse person, but I felt now was the time to use the biggest hammer I had against MS. My children are teenagers now and are not as dependent on me.

I am peeved by current trend for some neuros to discuss MS" burnout " . The world ms symposium ? Stated that the med evidence supporting this theory is weak and many neuros were alarmed saying that it is not " burnout" being g observed but that DMDs have worked. And and a certain percentage of patients will have "breakthrough" flares , which will require treatment. This is not acceptable to me since SPMS will march fwd regardless of this intellectual debate, and if I have "breakthrough" flare than I am the one that will need to put the pieces of my life together again and live inside this body with more disability.

Also I want to say that I believe neuros want what is best for their patients but every neuro has their own level of risk adverseness, thus I think it wisest to understand the med evidence behind their recommendations for particular DMDs and make ones own determination, with dr as guide. I deliberately chose to mitigate orcevous increased risk of infections by seeing an internist every 3 months to ck in, keeping up to date on all vaccines and wellness stuff, increasing dental cleanings to every 3 mo, and being a hand cleaning freak of sorts. I also started eating more plant based meals, and cut out my wine, at least for now, on theory that I wanted my body to focus on healing itself and not metabolizing alcohol. Mediation has been helpful to keep positive mindset. I was told about 33% actually (subjectively) feel better on ocrevous so I've been doing everything possible to be in that percentage. I think everything I'm doing is making me feel better, whether this DMD will slow my progression will need to be assessed in later date. I've picked a goal - to continue to be mobile in 10 years and generally independent. MS is a progressive chronic disease and no matter how brilliant or well meaning a neuro is, if they are a spry 40 year old person for example, how on earth can that dr do a meaningful risk benefit analysis for me? That dr has no real understanding of what An MS patient is willing to risk to stay mobile and independent. Best Advocate is you.

[AMFADVENTURES]

Hey Linda,

I actually refuse to get any more MRI's unless my neurologist promises to give me his opinion of brain volume. Apparently my neuro passed this along to the radiologist because on my last MRI the radiologist included an evaluation of brain volume relative to normal. So now I'm getting two professional opinions both of which indicate that there is no significantly abnormal reduction of brain volume! I'm pretty happy with this arrangement even if, as I believe, both are somewhat optomistic.

The problem is that they are just opinions. I have read about software being developed specifically to evaluate brain volume and changes in brain volume from MRI data but usage is not commonplace yet.

[MSLazarus]

Ditto....much more coherent explanation than mine

I too have no indication of active lesions......not in years. ( Although I have read about newer MRI machinery that can expose more MS activity).

My neurologist understood years ago that it was not a surprise to find MRI reports with no significant change from the previous one and yet my MS was progressing.

I have asked about brain volume in the past and he always said he had no information and would look or maybe he just let the question drop in our meetings. I do realize that I never followed up to get an answer.

It has been on my mind for the last year. Your answer is at the right time for me because I think change is looming over me.

[AMFADVENTURES]

LMH, just a couple of thoughts.

My impression of the MS burnout with age theory is that it is based primarily on anecdotal evidence and secondarily on a lack of active lesion activity on MRI's generally in people dx'ed SPMS. Anecdotal evidence of course is not the same as scientific evidence. And most neurologists agree that the lesion activity seen on MRI'S is only the tip of the iceberg when it comes to the damage done by MS.

A better metric, particularly for people diagnosed as secondary progressive, might be brain volume or more specifically, the reduction of brain volume over time. You might consider asking your neurologist or radiologist to look over your last few MRI'S specifically for brain volume. Any indication of an alarming rate of brain volume loss might be a good reason to switch to a more aggressive disease modifying therapy.

I probably would not have gone on Rituxan had it not been for an extended period of rapid MS progression which BTW, did not show up as an active lesion on the MRI but may have been evident as an enhanced lesion!

Good luck,

[MSLazarus]

That is a big question.....

Many years ago I was about to switch meds and wanted a second opinion. I don’t know why. My neurologist was the best you could imagine and he had always sent me for second opinions when it seemed Important.

Anyway, I did not listen to him this time and made my own appointment with the head of the neurology dept. at Hartford CT. Hospital. Sure enough he advised against using any med because I was in my 50’s and the MS would just fade away! I wa shocked. Fortunately my insurance company never got this guy’s report.

So, I went to see my neurologist again and told him about my visit in Hartford. He looked at me and quietly said “ I told you not to go”. I am laughing now just remembering ...


So now I am 72. I am a very active farmer and my doctors know that as my MS slowly progresses my goal is to be able to keep farming. The thing that makes the decision for me is the low profile of side effects with rituxan/Ocrevus. I am not sure what I would do if the rituxan stops working. I am in a tough situation because previous cancer makes some meds more dangerous for me.

Let me know what you do! Best wishes....

[Lmh]

Gardenlady

So, I just have a question as I’m contemplating a medication switch. Inactive SPMS, but slowly progressing... my neurologist is offering up Tecfedera. No Orecrevus or Rituximab .
Says my MS doesn’t warrant these medications, and that it’s possible for MS to burnout with age. This seems inaccurate based on the literature that I’ve been reading, even though there is some research exploring stopping DMT’s in older PwMS.
What are your thoughts? Suebee do you still have active MRI’s?
Thanks!

[Suebee]

Animal live vaccine and possible risk to immune compromised human

Https://academic.oup.com/cid/article...437242#6522761

[Suebee]

MSLazeros, I've been thinking about your situation since your last post. Sometimes I've noticed that simple solutions can get overlooked by medical specialists. UTI Culture can find uti s missed by traditional urine sample. Similarly with blood culture. Low potassium can occur if one takes a statin. Vit d, b12, and iron can be depleted and not tested. Also livestock and pets get some live vaccines that can be a danger to immune compromised humans in close proximity. I thought I'd throw it out there. Hope you are feeling better soon.

[MSLazarus]

Here’s wishing us all well

This is the first time in 30 years that we are stumped and I am having trouble thinking, reading, moving and maintaining the farm.

And no one knows what is wrong....causing the heart palpitations, swings in blood pressure, shortness of breath and general body weakness. It is irritating to have no idea which way to turn. Several new doctors but tests are stretching into April....I do now have an inhaler it is does help.



Well, I need to map out a plan to handle each day and maintain hopeful thoughts and humor. Just wish it was not so hard to crank up this old body!

P.s. I grow my own turmeric! It is easy and makes a nice looking houseplant too��
I have been a vegetarian for 52 years and find the benefits of certain spices amazing.

[AMFADVENTURES]

Thanks for the update Suebee, sounds like it was pretty easy for you. They don't give me bennedryl any more because it puts me to sleep and apparently I am a horrible snorer in an upright possition. They do give me a different antihistamine that does not put me to sleep and it really is noticeably easier on me in terms of the scratchy throat thing.

Linda, hope you get on top of those problems. So many different things could cause that. Somehow I doubt moving to ocrevous is a bad thing though.

I mentioned in an earlier post that my HMO is changing my drug from Rituxan to Tuxima. Turns out the copay on the new drug is about 50% more. I'll have to look into that. I am perfectly happy with the Rituxan.

Larry

[Suebee]

Link to tumeric article

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4190737/

[Suebee]

Thanks MSLazeros. I'm glad all tests showed clear. Both rixtaub and ocrevous can cause respiratory infections. You might want to try tumeric either a capsule or tea. I drink tumeric tea sometimes. I dont like taste, and it can upset my stomach, but do I do it for health. Science backed data shows it has an antihistamine effect on mast cells responsible for inflammation in lungs. It actually is shown to help with all types of infections. Here is article about study on lungs treated with a capsule tumeric amt. Might be worth a try.
Also, remember to brush and change toothbrush often. It is easy to forget about it but oral health is very key to staying well. I sometimes feel so fatigued at nt that I dont want to do bedtime routine but I make special effort now to brush floss and mouthwash. Simple but hopefully effective. I hope you feel better soon. Suebee

[MSLazarus]

Thanks for the update

Wishing you all the best and really appreciate the details you provided. I have been ill for a few months and it could be rituxan side effects. Or not. Ruling things out one by one. So I might switch to Ocrevus.

I have been coughing since November, shortness of breath, back pain and others. Life has been disrupted although I still have a lot of energy. Chest X-ray clear, cat scan clear etc....heart tests coming. Using an inhaler now and it helps stop the cough. Surprised me!

[Suebee]

Infusion update

Hi all, I wanted to give infusion update. I had ocrevous first dose, split in half and given 2 wks apart.
In general: I feel pretty good, in fact after 1st infusion I felt fantastic. I had more noticable energy and physical wellbeing. I rested 1st day per nurse instructions and then was quite active for me in subsequent days. After second infusion, I had something I needed to attend 1st day so didnt rest. I had a similar sense of wellbeing but felt fatigue requiring me to rest day 2 and 3.

The procedure: at hosp is infusion with steroids, followed by benadryl, then the ocrevous. It takes several hours. They start off slow and increase rate of infusion every 1/2 hour. The benadryl makes you sleep. I brought my own lunch, device to listen to with earbuds, and my hubby. I choose a positive meditative audio to listen to during infusion. I'm sensitive to the noise of clinic and earbuds took care of it. Nurses keep an eye on you for reactions. I had none.

Post infusion: The night of first infusion my throat felt a bit scratchy so I took oral benadryl per nurse instructions. The second infusion my eyes felt a bit scratchy/ achy so I took allergy eye drops. Both symptoms were mild and effectively managed. I've had some head aches but not sure cause.

Infection prevention: my family understands the importance of me not getting sick so if they feel under the weather they dont get in my face . I got a few superficial skin cuts that I normally would have ignored but I promptly cleaned and treated. I changed my toothbrush, use paper towels instead of family hand towel, went back to using strong mouthwash everyday, and put small handsa iter bottles in car and purse. When I had to take my child to urgent care and had to sit in a flu infested waiting room, I donned a face mask. I know basic surgical masks aren't too effective to keep out virus, but I felt better wear it anyway. My sick, normally embarrassed my mom teenager, r didnt mind. She is a Sweet kid. I recently found MS blogger Tripping on Air and planned on ordering a "cambridge mask" that she suggested for these type situations and kicked myself for not getting one sooner. and when I tried to order one on my phone from the urgent care lobby, I discovered they are sold out because of coronavirus fears. I will get one for this type situation when restocked. FYI - a dr on radio said that the pneumonia vaccine will be effective to prevent pneumonia if one gets the coronavirus because pneumonia is a secondary infection from virus. I hope so. As a reminder, consult with your doctor and update your vaccines before going on orcevous.
I hope that gives helpful info to anyone considering it. Suebee

[AMFADVENTURES]

Hey Suebee, Medicare pays for my Rituxan through my HMO. It is on the Medicare approved drug list for MS. I might also say that although the Rituxan hasn't entirely stopped my MS progression, it has significantly slowed it down. Hopefully you will at least get that much relief from the Ocrevus.

Larry