Hand Numbness

[polopuppy]

Hi KoKo and Kathy,

I have been waiting all day for some sort of update but haven't heard a thing. I'm still feeling pretty yucky from the Rituximab today so I don't even think I can manage high dose steroids at the moment. I am one of those unlucky people and steroids cause bad side effects including tachycardia, severe hypertension and high blood sugars. I know I need them but I don't want them. The holidays are going to make things even more difficult as the infusion center is already booked.

In retrospect, I have had three relapses since starting the Rituximab. My neurologist warned me that relapses were not uncommon in the first months of starting treatment. My first relapse happened 2 months after starting. The second one was at the 11th month mark and the last at 14 months. I know the Rituximab is on board for the next 6 months, give or take. I've asked my neuro the big questions so I will wait and see what he recommends. I worry that I may becoming more progressive since I spent many years not on a DMT.

I'll keep you all posted once I hear more. Thanks, again!

[Mamabug]

Now I am worried about what that means with my current Rituxumab therapy. This is now my second documented relapse since starting Rituximab in October 2018. I know it isn't a cure for MS but all the studies I read indicated extremely low rates of new lesions developing while on Rituxmab. Does that mean it isn't the right med for me? Has anyone else experienced this and if so, what was your next step? Sorry for all the questions but I am freaking out a little bit here.

Thanks!

When I switched from a general neurologist to an MS specialist in 2008, she told me that, if I was having a flare once a year, my DMD was likely ineffective. She switched my meds.

I'd been having 1-2 major flares per year. Since my switch to a different med, my flares are much more infrequent. I had two very minor flares in 2011 and 2 minor ones again in 2014. None since then.

It's possible that, rather than becoming more progressive, this med is just not a good fit for you. We all respond differently.

[Kimba22]

Hi polopuppy,

Sorry to hear about your new lesion and relapse. It sure sounds like you've had a rough week with your relapse, MRI, and Rituximab infusion. Wow, 10 hours with your infusion (and a moderate reaction to boot ), what a long day, on top of everything else going on!

To take full effect, DMTs in general take 6 - 12 months to start working. I am not on Rituximab, but Ocrevus, which is similar. My MS Specialist told me it may take up to a year to take full effect.

Since your last two relapses have occurred at the 11th and 14th month since starting, this medication may not be the best choice for you. It definitely warrants a discussion with your neurologist.

According to the MSAA, if you have more than two new lesions on an MRI in a year, it could be a sign that the current disease-modifying therapy is no longer working and you should consider a switch.

Your MS is still active, with 3 relapses within 14 months, regardless of the stage you are at. So it would still be recommended you take a DMT. Like Mamabug stated, this one just may not be the right fit for you.

Sorry to hear about your reactions to steroids and the infusion center being booked, too.

I hope you start feeling better soon and best of luck with everything. Please keep us updated.

[polopuppy]

Hi Faith and Kimba,

Oh yes, I have had a rough week. I am absolutely exhausted and feeling very overwhelmed with the holidays, work, etc. Rituximab seems to kick me in the bum for a good 4-8 days.

Thank you for sharing your experiences. I agree, this may not be the DMT for me but on the other hand, it may be doing the best it can. My disease became very active and aggressive in 2018 with a large number of new brain and spine lesions on every MRI. I was on Imuran so it was stopped to allow for a washout period prior to starting Rituximab. In less than 2 weeks into the washout, I developed severe optic neuritis.

I think that the Imuran was keeping things at a smolder and that stopping it allowed for a severe flare. Rituximab is doing a somewhat better job keeping things dampened down but it doesn't have complete control. Many of my enhancing, vasogenic lesions did stop enhancing and remain stable on Rituximab, although none have gotten smaller or disappeared.

I have a fantastic neuro-immunologist/MS specialist at a huge teaching hospital but he is not easy to reach and appointments are scheduled 6-8 months in advance. I feel like I am falling through the cracks a bit. They have no on-call neurologists after hours, weekends and holidays which I find so strange. I really hope he gets back to me today with answers to my questions.

I'll update when I can. Have a good day!

[Mamabug]

... but on the other hand, it may be doing the best it can. My disease became very active and aggressive in 2018 with a large number of new brain and spine lesions on every MRI.

This suggestion is a little out of the mainstream, but, in the last 18 months, I've been seeing a functional medicine doctor in addition to my MS specialist.

Prior to that, I hadn't been experiencing new lesions, but I was noticeably declining. I've significantly changed my diet (no wheat, no dairy, no refined sugar) and my lifestyle (I use non toxic products, I work on stress management, etc). I have not declined since beginning these changes, and I've made a few small incremental improvements.

[polopuppy]

Hi Faith,

Your suggestion is not out of the mainstream for me and is a great idea. I actually see the Integrative Medicine team at my medical center. Interestingly enough, my Integrative medicine doctor is an anesthesiologist who was diagnosed with MS. She could no longer practice in her field so she changed her medical focus. She is excellent and has so many helpful suggestions. She even runs a 12 week lecture series that covers everything from nutrition, to sleep, to supplements, to stress reduction, etc.

I have embraced alternative medicine as an adjunct to trying to be as healthy as I can be. I get weekly massages, frequent acupuncture, do guided imagery, meditation, etc.

As far as diet goes, I have Celiac Disease so no gluten for me. I eat a clean, mostly organic diet. Luckily, I have access to excellent produce year round from our wonderful farmer's markets here in California.

Thanks for bringing it up.

[polopuppy]

Whoops, I was adding an update in my response to Faith but somehow I sent it off before I was done.

I started IV steroids this afternoon. I had to leave work early to do them but there wasn't much I could do about it. I will get them tomorrow and Friday, too. Let's hope the steroids do the trick.

My neurologist responded to my email saying that he wants to stay the course with the Rituximab and give it more time. He doesn't want to re-dose me in 2 weeks either as he thinks the 1000 mg was a substantial amount. He wants to proceed with closer monitoring and watchful waiting. I reiterated my concerns but told him I would trust his expertise. He believes that I am relapsing remitting and not progressive at this time, which is a huge relief.

Crazy enough, I have a weekend trip planned for Disneyland this weekend and I really want to go. I have always wanted to see Disney all decked out for the Holidays. Fingers crossed that I get there.

[Mamabug]

I have embraced alternative medicine as an adjunct to trying to be as healthy as I can be. I get weekly massages, frequent acupuncture, do guided imagery, meditation, etc.

Awesome! Thanks for letting me know. Although I don't do massages, I do all of the rest of the above, as well as supplements, essential oils, kinesiology, etc.

It sounds like we're sort of on the same page.

I'm also still on my copaxone, but I'm in conversation with my MS specialist about going off, as I'm likely in SPMS now.

[pennstater]

polopoppy - here's hoping you get that Disneyland at Christmas trip in this week-end! It sounds like an awesome adventure.

I know the one benefit steroids gave me - manic energy until I crashed. My house was always so clean after steroids. Hope you tolerate them ok this time.

[polopuppy]

Nope, not tolerating them that well at all. I had the worst heartburn of my life last night despite taking Dexilant and Pepcid. I then started to throw up bile and was sweaty and dizzy. When I woke up this morning, I had a heart rate of 165 and a blood pressure of 180/109. It took lots of extra Beta blockers to get my vitals under control. So far, I am in an okay range. I get the last dose tomorrow morning at 9 am. I am going to pack my suitcase and hope I make it on that plane! I want to be at the Happiest Place on Earth and try to let go of some stress.

[KoKo]

Nope, not tolerating them that well at all. I had the worst heartburn of my life last night despite taking Dexilant and Pepcid. I then started to throw up bile and was sweaty and dizzy. When I woke up this morning, I had a heart rate of 165 and a blood pressure of 180/109. It took lots of extra Beta blockers to get my vitals under control. So far, I am in an okay range. I get the last dose tomorrow morning at 9 am. I am going to pack my suitcase and hope I make it on that plane! I want to be at the Happiest Place on Earth and try to let go of some stress.

polopuppy

Sending 'feel better' and 'feel good' and 'feel great' vibes your way!

Hoping that at least one of them will reach you!

Take Care

[pennstater]

I

So sorry to hear polopuppy. Hoping you feel at least good enough to go. Also hoping the steroids help resolve your symptoms quicker. Especially after your reaction to them! Take care.

[polopuppy]

I received the MRI results. The new lesion is located at T9. It is large and encompasses the central and dorsal aspects of the cord. I now have a collection of T-spine lesions at T3-4, T9 and T10-11.

I'm not sure why that area is suddenly getting all the attention. Previously, it was all brain and brain stem lesions.

Some of my symptoms are already improving with the steroids so I guess I'll have to take the bad with the good. I'm packed and hoping I'll be getting on that plane this afternoon.

Disney Hotel is doing a deep clean of the our hotel room, including wiping down all surfaces with Lysol wipes. I'll mask for the plane, clean our seat area well and use lots of hand sanitizer. I'm so excited to go.

[KoKo]

I received the MRI results. The new lesion is located at T9. It is large and encompasses the central and dorsal aspects of the cord. I now have a collection of T-spine lesions at T3-4, T9 and T10-11.

I'm not sure why that area is suddenly getting all the attention. Previously, it was all brain and brain stem lesions.

Some of my symptoms are already improving with the steroids so I guess I'll have to take the bad with the good. I'm packed and hoping I'll be getting on that plane this afternoon.

Disney Hotel is doing a deep clean of the our hotel room, including wiping down all surfaces with Lysol wipes. I'll mask for the plane, clean our seat area well and use lots of hand sanitizer. I'm so excited to go.

Good luck and have a marvelous time, polopuppy!

Take Care

[pennstater]

Really hoping that you are in Disneyland and enjoying a magical Christmas!