MS news notes: Stem cell transplant, Lemtrada, treating seniors

I agree that there should be no difference between a young person and an older person getting treatment. Lack of treatment is just another way of saying "You're old and you don't don't have much value in the rest of your life."

Lemtrada worked GREAT for me!!

Us old MSers are ignored or neurologists so threatened by fear of secondary infections that they will not pursue more aggressive treatments, ie, Lemtrada. And then we are not eligible for inclusion in drug studies. There are as yet no really effective therapies that stop new lesions as well as stopping progression. And MS IS the same disease whether it's RRMS, SPMS or PMS. About the only therapy I am willing to try at this point is an antiretroviral. I believe in the EBV as causation. But I would have to get HIV to get that treatment.

Thank you for your informative article. Like you, I had the Lemtrada treatment in my late 60's. I have been diagnosed with MS for 30 years. I had no improvement in my disability. However, I choose to think that the treatment slowed down the worsening of my disability!! Keep moving no matter what!!

I agree with you 100% Ed. Life does not cease nor become less valuable at 60. I was diagnosed at 37 and just turned 60. I had aHSCT at 52. I am so glad I was offered the treatment on a compassionate basis, and great results lasted roughly 4-5 years in remission. I do think I am much better now, though, than if I had had to just settle for steady progression of my MS.

I now take Mayzent, which I compared to a contact at Novartis as "HSCT Lite" or a topping up, if you will, of my stem cell treatment. I think older adults would be extremely likely to volunteer for trials. We need that data, and as a society, we need to stop devaluing older adults in general!

My neuro has allowed me to stop Avonex at 70. I'm only two weeks in so I'm just a little aprehensive.

I am 62, diagnosed in 1981 (age:20) & have been receiving Ocrevus treatment for about 5 years. I agree there should be no arbitrary age barrier to aggressive treatment. And, I agree that there should be more research into treating people who are 50 and older.

I am 65 years old & was diagnosed with PPMS 4 years ago. My neurologist put me on Ocrevus. I had lost total use of my right arm & hand along with partial use of my right leg. Over a short period of time, 2 to 3 months partial use of both limbs came back. I am still getting the infusions of ocrevus

Yes I agree, there should be more studies on people with ms 50 and older!!!

At 69 years old, my neurologist and I are entertaining stopping treatment. My latest MRI showed no change and the last three MRIs also have no apparent change. I was diagnosed at 24 with PPMS, with most of my issues being in the areas of muscle spasms, nerve issues, and fatigue. I have also had cognitive issues and short-term memory loss which have progressed to the point that I was forced to retire early at 62 on disability.
I am fortunate that I do not experience episodes that debilitate me or have me in a wheelchair. I have walking troubles, especially with drop foot so I trip. I use a number of mobility aids depending on how I feel on any given day.
I'm not sure if I should stop DMTs and wonder if continuing use would be detrimental.

I am 72. We all experience MS differently and react to meds differently. I am on a high-efficacy DMT. I agree keep medicating as strong as tolerated. If a Doctor/insurance company took me off and I got worse, I don't want to hear, "Oops!"

Regarding the stem cell treatment for MS, the patient must be in pretty good shape and able to walk a certain distance. Years ago, I wanted my daughter to have the treatment, but she didn't qualify. Also, it's not as foolproof as made out to be. Some patients die when their immune system is suppressed or destroyed.

I too am a senior, age 72 years young. I have SPMS, am unable to walk, deal with cognitive issues, have a weak voice, hearing loss, and neurogenic bowel and bladder concerns. I have multiple additional comorbidities. My diagnosing neurologist whom I had seen for the past 15 years, recently partially closed his practice. I had been driving 3 hours round trip to see him, and had every confidence in him. There is no neurologist specializing in MS where I live. Needless to say, I was distraught. Over the years, and after having been on Beta Seron, Tysabri, Gilenya, and Aubagio, my neurologist put me on Ocrevus. I had the worst ever relapse initially. After a while, my progression more or less leveled off. When I was forced to seek a new neurologist, she immediately took me off Ocrevus due to my age. I was afraid, but agreed to try going without a DMT as a trial. One slight advantage, if you can call it that, was that I receive monthly IVIG (Gamma globulin) infusions due to my primary immune deficiency, CVID. This was used in the past to treat MS, before the more modern DMTs were developed. So perhaps that gives me an edge. While it was scary to stop DMT, it ultimately has worked out well for me. I try to follow research on this subject, and do agree that the decision should not reflect an arbitrary age cut off, but rather the decision should be in the hands of the individual neurologist and the patient guided by ongoing research.

I’ m neurologist treating ms patients even bafore interferon was available
I used all approved and off label drugs
I never decided by myself stop DMD because of age Even so I sow worsening disease when ‘stable’ old patients decid by themself stop treatment
So I completly agree with you

Am 72 years old. Was diagnosed with Primary Progressive MS in 2007 ( 16 years ago). Have had no treatment for it. Wonder if you know of anything I can do?

I agree with your thoughts and recommendation

Dear Ed
I rally agree about the treatment offered old people!
I have eagerly discussed to get treatment since the first interferon came in 1993, and I went to Finland and bought it.
Later I got some interferon and later Copaxone in my local hospital here in Norway.
In 2016, nearly 70 years old, I had a consultation in Tisch center in New York. They recommended Rituximab, which my local neurologist insisted there was no indication for at my age! I had to find two other local hospitals and travel quite far to get infusions each 6 months. Then the pandemic came and we stopped medication.
Now I feel progression, I am 76 - and I have started asking/fighting again.
I will fight for my tax-financed medical treatment! If impossible, somewhere there is money-interested institutions which
will sell it...
Best wishes
- Liv

Hi. I am 70 years old. I have had MS for 50 years. Initially, I was on prednisone on & off. About 2000, I was referred to 'the', the 'only' MS Clinic in the city, it now has 3000 patients. Early on, I was on interferon then Avonex but my antibodies were high) & it was discontinued. I've had one infusion & was trialed with fampridine but because my walking speed didn't improve, I was discontinued despite my walking distance greatly improving.
Short story, I haven't been offered anything despite asking. I think that younger people are being treated. I live in Manitoba.When I see the neurologist, I feel that my symptoms are being recorded & that's it.
It was interesting to hear stories from older persons with MS. Good luck!
Kathy
Just recently, other things, comorbidities, have begun osteoporisis, hypoglycemia (?)

Stopping DMT's because of no apparent disease progression confuses me – like closing your umbrella in a rainstorm because you're not getting wet or stopping insulin in a diabetic. No disease progression and activity is kind of the point, isn't it?

I was finally diagnosed with SPMS in 2012 at the age of 55, after having experienced symptoms for at least 15 years (leg weakness, foot drop, loss of dexterity and strength of left hand, falling, vision problems). I just missed the chance to join the Phase 3 trial of Ocrevus. A year later, I became a subject in the Phase 3 double-blind trial of Siponimod, now called Mayzent. One pill a day for 5 years, what could be easier than that? Plus lots of quarterly testing for the EDSS. I still continued to progress but slowly. Does anyone remember the peg test, moving pegs into the holes and taking them out again? Well, my left hand tried at the beginning of the trial and by halfway through the 5 years, it just refused to pick up those darn little white pegs. I started using a forearm crutch, moved to a house with few stairs, retired, and moved my horse to a barn less than a mile from home. At the end of the trial, I found out that I had been receiving the trial drug, Siponimod, and they were extending the trial for two more years. By the end of all this, the participants were told that if their disease was “active “ according to the latest MRI, they could continue on Mayzent courtesy of the drug company. But they didn’t consider my disease to be “active”, meaning no new or enhancing lesions in my brain. Still, my new neurologist (previous doctor retired at 67), found private funding to allow me to continue with the Mayzent. At my 6-month follow-up, she recommended that I discontinue the Mayzent, based on my blood pressure and my age. At my next birthday, I would be 65. The drug had not been tested on ‘elderly’ patients so there was no safety data.

So I have been MS drug free since 2021. My MS has really progressed. Of course, the pandemic has had something to do with that. I’m this [ ] far from needing a wheelchair. Even worse, I may have to give up riding my horse. But I’m not going to give up! I’m going to get off my butt and get moving. Right after a cup of tea…😄 🇨🇦💁🏇

I was diagnosed at age 53 (symptoms started at 50). For the last 10 years, my Spinal MRI has shown increased progression and I am now declared disabled looking at probable wheelchair usage. After being on Avonex since diagnosis, I have just had my first Ocrevus dose and hope that this will prevent wheelchair dependency. I am still a full-time teacher and feel that treatment should be maximised until I decide to stop.

I totally agree that "older" ms patients should be treated for our disease. I have been on Ocrevus for 5 years and I am much better now that I am 63 than when I started taking it. Some small percentage of ms-ers on Ocrevus improve, though I have been unable to find a number in my searches. When I started on Ocrevus, I had not been able to walk much more than a quarter mile before my gait got sloppy and I needed to sit very still for 45 minutes before inflammation went down so that I could walk reasonably well again. I am now able to walk 2 miles before I need to sit. (I also use a neural sleeve to allow me to go this distance.). I am hoping for more improvement.

could you please inform me where stem cells treatment is done?