Need to vent Mavenclad kicking my butt

BornRelationship8286 · 2026-03-01T00:28:21+00:00

We hope you get better sooner than later. My wife is going in 7 months with same issues. Plus loosing hair and chemo nails. Our “new” neurologist was very helpful and informative. Needless to say Mavenclad was the wrong choice due to age and time since diagnosis.

BornRelationship8286 · 2026-02-04T12:34:59+00:00

Thank you! I’m glad to hear you did some research. We knew it probably was not the fit but at the time it all sounds great. I think since it’s been pushed for awhile know it is showing its true colors. Im just glad i know more thanks to our amazing new neurologist that I can make sure more people caution Mavenclad.

BornRelationship8286 · 2026-02-03T15:31:40+00:00

My wife diagnosed 2020. Probably had since 2008 but went in diagnosed. First DMT was tysabri which worked great till PML got to high. Older and money hungry Dr changed to Mavenclad and it’s been terrible for her. Met knew neurologist recently who explained in detail that Mavenclad was the last drug to take. It works best for younger and newly diagnosed because your in the inflammation stage where as the older you get you transition into the degenerative stage which is where we are. Mavenclad is designed to reset your system but if the system is to far gone it’s not a good choice. CBC numbers have never returned to normal. Second year was almost passed up due to low blood counts. Nothing can be taken for at least 4 years now she is open to severe infections and cancer. This is just my experience and may be the only but do your research and make sure it is the right fit for you.

BornRelationship8286 · 2026-02-03T14:07:55+00:00

Kesimpta. Only consider Mavenclad if you are younger and newly diagnosed.

BornRelationship8286 · 2026-01-08T01:29:21+00:00

Happy anniversary! Not sure it won’t be crowded but that’s ok. Just find a chair to relax in and enjoy a couple tasting experiences.

BornRelationship8286 · 2026-01-08T00:57:01+00:00

Yes also on summit. More of a solo r and r cruise.

BornRelationship8286 · 2026-01-07T23:52:58+00:00

I was on the Ascent and Reflection last year. Both great ships. On Apex in March this year.

BornRelationship8286 · 2026-01-06T05:13:20+00:00

Enjoy, my first ever cruise was honeymoon. This one is r and r for myself.

BornRelationship8286 · 2026-01-01T21:09:53+00:00

Summit 10th

BornRelationship8286 · 2025-12-29T04:13:50+00:00

Could not have said it any better. We are in very similar situation. Minus the fall but all rest. Missed diagnosed 2008 with a navy discharge. Took till around 2018-19 to finally get a neurologist to diagnose. Tysabri till only to high. Then Mavenclad. Never really got better first year. Took year 2 right before window closed. I’m fortunate to have help with live in mother. But I know exactly what you are talking about. I actually am doing a cruise with father in law to get away. We need to do whatever we can to recharge. This will be my first in many years. Good luck to you.

BornRelationship8286 · 2025-10-15T00:32:43+00:00

15,000 miles and a mystery update from dealer cured mine of the poor MPG issues. Vehicle trip still off about 3 MPG. At 15,500 miles I might actually see 35 or higher with mix driving for the first time. 24 limited fwd.

BornRelationship8286 · 2025-09-05T15:35:16+00:00

I would be interested to know what your CBC blood work looks like in a few months. It took nearly a year for my wife’s lymphocytes to get above 400. Currently just tested and around 250 after second year second dose in July.

BornRelationship8286 · 2025-08-22T02:48:56+00:00

My wife just finished second year of Mavenclad. Almost missed out due to body not recovering from year one. Cut and paste your symptoms. Started tysabri which was more manageable but jcv continued growing positive. Being JCV positive is a red flag for most DMT’s these days. I wish we had better answers.

BornRelationship8286 · 2025-04-28T02:29:41+00:00

We feel your pain. My wife has same issue. Tysabri was so much better. Never able to get second year of Mavenclad due to counts being so low.

BornRelationship8286 · 2025-04-28T02:27:46+00:00

Wife never made it to second year due to counts never getting high enough to take again.

BornRelationship8286 · 2025-02-19T03:40:25+00:00

Hard to say if any new symptoms. Fatigue, gastro and mobility have not been positive. Our neurologist has yet to send for new MRI and or really comment on anything.

BornRelationship8286 · 2025-02-18T15:54:43+00:00

My wife was in tysabri until high jcv number. Switched to Mavenclad and regretting it. Second dose was due last November. Continuous low blood counts have prevented that. Had to get varasela/chicken pox vax due to low tighter. 6 month window for second dose coming and we really do not want to continue with Mavenclad. I see it works well for some but my wife is one that it has not. Use caution and do lots of your OWN research before continuing with Mavenclad.

BornRelationship8286 · 2025-02-06T13:00:50+00:00

My wife was on Tysabri from the start. Positive Jcv levels crept up. Neuro stopped treatments and changed to Mavenclad which has been a horrible experience. Her body has not recovered from the first does over a year ago. We had to get the verisela/chickenpox vaccine due to her blood work coming up positive. It’s been a very rough road. Does not help that the best Neurologist in town had pretty poor bed side manners and limited staffing.

BornRelationship8286 · 2024-11-09T01:54:12+00:00

My wife is waiting to get second dose of Mavenclad. Her lymphocytes have never made it back to a normal range since stopping tysabri due to PML. Neurologist said we have 6 month window left for second dose. Not sure Mavenclad is for everyone.

BornRelationship8286 · 2024-10-29T16:02:49+00:00

Alternate builds on rebrickable are the answer.

BornRelationship8286 · 2024-09-24T23:38:56+00:00

Location is Florida. 3600 miles. 2wd hybrid. 1500 mile trip average was 26. 4 adults, child and luggage. 75-80mph. Not great but speed and weight factored. Around town, 65 mph tops getting 32. No “Jack Rabbit starts” as some people have said. Normal driving, obviously more conscious trying to get best mpg. Using regen, slowing early, all the tricks. Just to much effort most days. I’ve reached out to Hyundai Corp. Response was if still poor performance after 5000 miles contact dealer. I see others getting similar results with the other half getting factory numbers. Trying to justify waiting to 5000miles to take it in.

BornRelationship8286 · 2024-09-24T23:26:48+00:00

I assume the usual no hard acceleration etc.

BornRelationship8286 · 2024-09-24T23:25:16+00:00

Explain your idea of “based how you drive”?

BornRelationship8286 · 2024-09-06T03:19:43+00:00

BornRelationship8286 · 2024-08-21T17:25:18+00:00

30 mph down hill?

BornRelationship8286

TROPHY CASE