My recent MS specialist appointment

[Mamabug]

We just spent five days in KC. We celebrated our 35th anniversary. We rentedww an Airbnb, which we've never done before. We tried new restaurants, p thatim explored downtown and rode the streetcar, we went to museums, etc. I decided it wa

We followed that with my appointment at KU med center.

Although I've maybe seen small, incremental improvements in some areas, my walking is not improving. I can walk a block or two before I'm done.

We talked about ampyra, but I decided it wasn't for me. We talked about the weakness in my right leg, especially. The weakness appears to be in my hip flexor muscles. I' might try looking into some strengthening exercises for those muscles.

We talked about my copaxone. I brought up that I'm not always taking it as prescribed in recent months. I wondered if, at my stage of MS, if copaxone is still helpful. We discussed options, such as discontinuing, following closely with MRIs, etc.

I have a lot to think about.

[pennstater]

Hi Faith,

Happy Anniversary to you! Your trip description appears to have been cut off a little. It sounds like you had a good time. Hope the airbnb was as it appeared online. We have used that twice - once it was as advertised, another, totally opposite.

Did your neuro give you any opinions about stopping copaxone? Some neuros seem to give an opinion, while others tend to lean toward over cautiousness.

I have had a weak hip flexor for about 10 years, but not to the point of it interfering with walking (for the most part). In the middle of a few relapses, it did give some problems, but once relaspe was over, I was back to normal. Now, if I let myself get too exhausted, it gives out. If you can, I would definitely look into stretching and strength exercise - hopefully, it will help some. It is always hard to know how much exercise will help when MS is in the picture.

Glad that both your appointment and trip went well.

[Mamabug]

Hope the airbnb was as it appeared online. We have used that twice - once it was as advertised, another, totally opposite.

Ours was awesome.
Clean, uncluttered, comfortable. Even handicap friendly, although not initially advertised as such.

We rented the whole townhouse (except for host BR/bath, which was locked). We parked in the garage. No stairs for me anywhere. After I asked questions about bathtub, etc, prior to booking, host purchased an attachable grab bar for tub.

A second option would have been to rent the front room, guest bedroom and private bathroom. Hosts may, or may not, have been around. Either way, we would have had access to kitchen and living room.

The other big difference (in addition to possible sharing with them) would have been that we would have had front door access instead of back door. One step (not a big problem). But no garage, off street parking half a block away, up a hill walking to get to townhouse. We made the right decision.

Location was ok, not ideal. About 20 minute drive to downtown and a little further to KU med center. But it met our needs in other ways.

Did your neuro give you any opinions about stopping copaxone? Some neuros seem to give an opinion, while others tend to lean toward over cautiousness.

I have had a weak hip flexor for about 10 years, but not to the point of it interfering with walking (for the most part). In the middle of a few relapses, it did give some problems, but once relaspe was over, I was back to normal. Now, if I let myself get too exhausted, it gives out. If you can, I would definitely look into stretching and strength exercise - hopefully, it will help some. It is always hard to know how much exercise will help when MS is in the picture.

Glad that both your appointment and trip went well.

Yes; Dr Lynch thinks meds are likely no longer necessary. My 2018 MRI showed 3 additional lesions since 2013 MRI. We both believe those likely occurred during my 2014 flares. No flares since then.

She may have recommended me for a study she's doing (50% continuing, 50% off) but I don't meet her criteria. I think I'd need an MRI that indicated 5 years with no new lesions.

She's pretty open to letting me decide. But would be cautious and track with 2 MRIs six months apart, and annual MRIs for the next four years. Usually I have MRIs once every 5 years. I'll think about it for awhile.

[Leenyi]

Hi Mamabug

I was very interested in your recent post since we have so much in common. Like you I have had ms for a long time and have been on copaxone for many years.

First of all I'm very impressed that you can "only" walk a block or two. I haven't been able to walk that far since 1992!
You mentioned considering trying ampyra. I did try it for a few months. I didn't have any bad side effects but I think my walking was too far gone before I started it. I'm wondering if it might help you since your still able to walk. Might be worth a try?

You also mention discussing stopping copaxone and monitoring what happens. You didn't mention what your Neuro said about that. I had that same conversion with my neurologist last year. He didn't think that was a good idea unless I was going to go on another dmt like Ocrevus or Siponimod. Was he thinking of changing drugs?

Well any way thanks for sharing and I'm glad you had a nice anniversary!

Ei

[Mamabug]

I just wrote a long reply and lost it before posting. Sigh. Maybe I'll try again later.

[Mamabug]

I was very interested in your recent post since we have so much in common. Like you I have had ms for a long time and have been on copaxone for many years.

It's always nice to find someone with things in common. MS affects us all so differently.

First of all I'm very impressed that you can "only" walk a block or two. I haven't been able to walk that far since 1992!

You've had MS longer than I have, I guess. My MS started in 2002. I could probably still walk about a mile (20 minutes) for the first five years, or so. Since then, my endurance has been going down.

You mentioned considering trying ampyra. I did try it for a few months. I didn't have any bad side effects but I think my walking was too far gone before I started it. I'm wondering if it might help you since your still able to walk. Might be worth a try?

I decided to nix it based on what Dr. Lynch told me about effectiveness (only about 40% of people see improvement, and only improves walking a little) and about cost (cheapest if you go around insurance and pay about $100 out-of-pocket), and about possible side effects (might affect sleep). I didn't think it was in my best interests.

You also mention discussing stopping copaxone and monitoring what happens. You didn't mention what your Neuro said about that. I had that same conversion with my neurologist last year. He didn't think that was a good idea unless I was going to go on another dmt like Ocrevus or Siponimod. Was he thinking of changing drugs?

Dr. Lynch and I both believe that my most recent flares, and probably my newest lesions as shown on an MRI probably occurred in 2014. I'm likely in SPMS now. Copaxone may no longer be helping, and most other MS meds are not geared to help with SPMS. She hasn't suggested using a different DMT.

She's open to me making the decision. If I go off, she would want to do two MRI's, 6 months apart, followed by one MRI per year for the next four years, to track how I'd be doing when off the med. Usually, I have an MRI once every five years. My most recent MRI was in 2018 and showed 3 new lesions since 2013 -- probably from the two flares that I had in 2014.

I'm seriously considering going off. I can probably think it through until my next appointment in 6 months; I think that she's want to do her first MRI at that appointment.

[Leenyi]

You're right Mamabug i've had ms much longer.

ON in 1984 and diagnosed in 1990 after my first major flare.
I started betaseron in 1996? By then I was already using a cane full time. Switched to copaxone a few years later.

Well any way I'm secondary progressive now. I have been thinking of switching from copaxone since I am on Medicare and it is too experience. My neuro recommended Mayzent (siponimod) or Ocrevus both treat RRMS and active secondary progressive ms. He had never used the term active before I don't have relapses and my ms has been fairly stable. so I'm not really sure what that means except the label would allow him to prescribe it for me?

I'm sorry this is so long I just wanted to explain why I thought these might be an option for you. Good luck with whatever you decide. I wish you all the best.
Ei

[Mamabug]

I have been thinking of switching from copaxone since I am on Medicare and it is too experience. My neuro recommended Mayzent (siponimod) or Ocrevus both treat RRMS and active secondary progressive ms.

Thanks for the explanation. What are the risks or side effects?

[Leenyi]

I'm sorry I don't know.
I do know that maznet is an oral pill and very expensive my Neuro suggested it before fda approval he thought it wouldn't be too expensive. He was wrong so I nixed that idea since I'm on Medicare. Ocrevus is an injectable so that would be a better option for me cost wise on Medicare.

I didn't end up switching from copaxone because I got a grant last year that covers its copay. The years winding down and I'm hoping I can get a new grant. No luck so far. If I don't get a grant I am thinking of trying Ocrevus.

As far as side effects maybe people from ms world can help.

[REG53]

Happy Anniversary Mamabug, you sure had a good one.

If you decide to stop C I hope it works out for you without any problems.

[Leenyi]

Ditto!

[dm0329]

Thanks for sharing your MS specialist visit update. I'm closely following your comments (along with others) as I suspect I am SPMS too.

As they say, misery loves company!

[Jules A]

Thanks for the explanation. What are the risks or side effects?

I'd recommend googling the package insert or medication's website for comprehensive information and discuss with your neuro if interesting.