Anyone with SPMS on any of the ABC's?

[gdmcor]

I know everyone has read that the ABC's are for people with RRMS and aren't helpful for other types of MS. Unless you can provide a link that states otherwise?

So, I'm seeing a new neuro next week, and I know the subject of starting something for progression will be brought up. My other neuro wanted to get me on one of the three, even though he knew I was SPMS. He tried to convince me that I was still RRMS, so that my insurance would cover it.

I don't want to start a powerful drug if it's not going to help and only give me bad side effects, plus mess with my body even more. I've had MS for over 27 years, the last 13 of them SPMS. I know this because I have daily symptoms with no remission.

What I'd love to know, is there anyone here on one of these drugs who has SPMS, and do you think it's beneficial for you? I can understand if you had RRMS when going on one of these drugs. But is there anyone who went on one of them after you knew you were beyond that point, and do you feel it's helped stop your progression?

Also, is there anything for progression when you are beyond RRMS? I haven't read of anything, so if you could provide a link that would be very helpful.

I want to sound as knowledgeable as possible when I see the neuro next week.
Thank you all for any help you can provide! Gretchen

[SalpalSally]

Hi GD. Being SPMS myself, I can only recommend LDN (LowDoseNaltrexone)
None of the others work for us or for PPMS. I feel that LDN has stayed my
progression, helps minimize my SX and gives me an all around feeling of
better health and well being. It is not a cure or any kind of a miracle drug,
But it works for me. I felt sick and weak all of the time on the so called DMDS.

[Jeanie Z]

:) Hi Gretchen, like Sally I have been on 4.5 mg of LDN for over 13 years. I became SPMS in 1992. I have had MS since I was 18 and I am now 72.

I took the print out on Only registered and activated users can see links., Click Here To Register... (the MS llink) to my primary and he was agreeable to my trying it as it is such a low dose. I did not get any improvement on LDN as many MSers do, but I have had NO new symptoms and NO further progression while on it and I am happy about that. It is a nightly capsule. I send my RX to Only registered and activated users can see links., Click Here To Register... and he ships overnight.

I went on Betaseron 5 years and Avonex two years and got worse while on both of those. I hope your doctor appointment goes well. Jeanie :)

[gdmcor]

Hi ladies and thank you for reminding me to ask about LDN, that's something I've been interested in trying for a while now. Just never thought to bring it up to any doctor. I like the idea of low side effects as well! So this will definitely be something I bring up next week.

Thank you for the links, Jeanie.

I don't know why doctors continue to push these drugs on patients who obviously are not RRMS anymore. It's so frustrating, esp. when you are trying to get real help with symptoms, to make life as easy as possible.

Thanks.....Gretchen

[agate]

Hi Gretchen,
I know it's tempting to wonder if the doctors are just trying to sell these drugs. But I think that the number of doctors who are promoting the ABCR drugs for mercenary motives is probably quite small.

They want to offer something for our disorder. Only in the last couple of decades has there been anything available that could be offered for MS, and doctors want to help us, not send us away hearing that we should "just" learn to live with a lifetime of MS.

I tried two of the drugs even though I have SPMS--and have had it apparently since 1978-80. Three years on Avonex and nearly three years on Copaxone.

It's not that the drugs don't work on SPMS. It's that they haven't been tested in SPMS and so it isn't known whether they work, though I think Betaseron was actually tested to some extent.

I believe the thinking is that once you're no longer having inflammation and relapses, the drugs probably will be of only limited use. But there are people with SPMS who do still have relapses.

Since the situation is so muddy, you might as well just go with your instinct and listen to the advice of a doctor you feel is competent.

Most neuros will prescribe one of the ABCRs for patients who want to be on one of them or will even encourage you to take one of them. I'd be suspicious of a doctor who was pressuring someone, though.

The two neuros who have overseen my use of these drugs presented them to me as something I could try if I wanted. As one of them put it when he was suggesting Tysabri, "We have to let you know what's available."

[gdmcor]

Hi agate, I did fire my last neuro because he was pressuring me to get on one of the ABCR's. He knew I was not RRMS anymore, but wanted to "pretend" that maybe I was. I appreciate that he wanted my insurance to cover it if I changed my mind, but he wasn't seeing my point and there was not much respect for each other.

I'm hoping this neuro is more realistic and will prescribe meds for symptoms, plus update me on any new meds that may come along for patients with SPMS. I also like having at least a brain MRI every few years, and an exam every year. I now feel it's important to have regular contact with a neuro since my condition could be progressing. My GP isn't up on MS info and also won't prescribe certain meds that I might need.

Anyway, I believe that whatever therapy one is on, it's important to have faith in it and see some sort of results. I think we can all agree with that!

Take care everyone! Gretchen

[Cat Dancer]

I have tried this twice and lost it twice. What is with this autosave thing? Maybe my message is floating around the site somewhere?

I stopped Beta about 4 years ago after being on it since 1991. I was diagnosed then (and now) as having SPMS. It kept my MS stable, kept me doing relatively well. I've had nothing but problems since stopping. Just in the last 6 months I've been hospitalized twice, and getting ready to go back in today. I have lost control of my bladder, I can't stand, can't transfer, have no energy, have all sorts of other problems.

No guarantee of course that it was the Beta that was the key...but things were MUCH better while I was on it, than now.

[SalpalSally]

Auto save is great, if you learn how to use it.
If I lose a message, go offline and come back to where you were and
"auto save" comes up, hit it and , walla, your lost message appears..!!

[agate]

Thanks, Sally. I've been trying to figure AutoSave out for a while too. I went looking for more info:

Only registered and activated users can see links., Click Here To Register...

[gdmcor]

Hi Cat, Any chance of going back on Beta? I'm very sorry to hear about your relapses since being off of it. Certainly sounds like it did keep you stable. I'm very confused as where to go next, but hope this new neuro can shed some light on my new symptoms and offer something not too deadly.

I will be inquiring about LDN, medical marijuana and an epileptic drug they use for painful spasms (short term use only). Right now I'm getting by with baclofen and a touch of klonopin for the spasticity. Still having walking problems (weakness) and my knees feel like they could buckle under me at times. I'll also be curious as to what they say about using ABCR's for SPMS.

I hope you get to feeling better. Gretchen

[Virginia]

Hi Gretchen,

I can see that you seem to be against taking the ABCRs, however I will go ahead and give you my take on what has gone on with me. I am SPMS and was when I went on one of the ABCRs almost 13 years ago. I have had MS since the late 70s or early 80s.

I am very faithful about taking my Rebif shots and I do think that I would be in worse shape than I am if I had not started when I did. I was having optic neuritis and it scares me, even now, to think what might have happened to my eyes. I have not had that anymore after being on the shots just a little while.

I have had some progression in the past 13 years, but also feel that has definitely been at a slower rate than it would have been if I had not started one of the DMDs. I am basing that on how I was progressing before starting on the shots. I am older than almost all of the people on here and I do not have bladder or bowel problems. Don't know if that is due to the shots or not. Just too grateful to take a chance on stopping them.

I have read that there is some evidence to indicate that the DMDs do slow the progression in people with SPMS. None of us know since they have not been tested in that group of people.

Good luck in your decision. I am very thankful that my Neuro wanted me to go on one right away when he saw me 13 years ago.

Virginia

[gdmcor]

Hi Virginia, I'm glad you have faith in the Rebif and it seems to be doing a good job for you.

I find it odd that the big companies don't do some trials with their drugs on people with SPMS. They may find another population that does benefit from using them and help them delay progression. I would think especially the ones who still have relapses with SPMS could benefit. Research is so lacking with this disease and others, it's neglectful.

Thank you for your story, I know you're grateful not to have bladder or bowel problems. I had urinary retention for a few weeks and it was very uncomfortable, along with UTI's.

Agate: Are you on anything now? I notice you took Copaxone until 2010, but not sure after that.

I'll let you all know how the neuro visit goes on Wednesday. I'm more confused than ever, but will be aimed with many questions and see what kind of responses I get.
Getting new symptoms is always very frustrating and disappointing for sure.
Gretchen

[agate]

Gretchen, I'm sorry I didn't find your question until just now. No, I haven't been on any of the MS drugs since stopping Copaxone in 2010. Tysabri was suggested, or I could go back on Copaxone if I wanted.

I would say that my MS has become worse so slowly that it almost looks as if it's stabilized or leveled off, since I was in my early 40s. But that was when I gave up on being gainfully employed--and was able to concentrate on dealing with the symptoms and how to prevent them. I was alone most of the time, and that was lucky in a way. Living alone with few opportunities to get out, what else did I have to do but learn how to get some more energy out of each day?

The minute I have to depart from my little routine and dance to somebody else's tune, I'm reminded of just how bad things are. A bit of heat, a bit of stress, a bit of fatigue, a fall or other injury--and I'm wiped out fast.

About the reasons for so little work in finding treatments for progressive forms of MS, a recent article called "Setting a research agenda for progressive multiple sclerosis: The International Collaborative on Progessive MS" by Drs. Robert J. Fox et al. in the Multiple Sclerosis Journal contains this:

A critical aspect in the development of therapies is a measurement tool of therapeutic efficacy. The ideal measurement tool is precise, reproducible, broad-based in its assessment, sensitive to change over time, and predictive of future change. The evaluation of MS therapies in RRMS was greatly assisted by clear definitions and objective measurement of clinical relapses. Establishing outcome
measures for progressive MS has been more difficult. This difficulty arises from the varied manifestations of progressive MS (motor, sensory, coordination, cognitive, etc.),
their slow rate of evolution, and difficulties in their quantitative measurement. There are two main pathways to solving this challenge: refinement of existing outcome measures and development of new outcome measures.

Not sure this link to the article will work but here it is:

Only registered and activated users can see links., Click Here To Register...

[gdmcor]

Thanks for your response, agate!
The link you provided is very informative. I hope someone comes up with some studies for the progressive forms of MS, we could use a little help and more hope for our future. After all, most people with RRMS become SPMS at sometime!

I also keep my own schedule, even having a teenage son and husband. They know I need extra rest and help around the house at times. I'm still having trouble walking from this last relapse that began 6 weeks ago.

I haven't had the painful spasms for eleven days now, so that's a Godsend. However, my legs are still weak and wobbly, with burning sensations, achiness and buzzing. Yucky stuff!

The new neuro, a nurse practitioner, put me on Neurontin a couple of days ago. I've taken two doses of 300 mg. each and it makes me anxious with heart palpitations, very unpleasant feelings. This goes on for about an hour and a half, then I get groggy. I don't know how I'd be able to take the 300 mg., 3x a day that she prescribed. In fact, I'm going to have to ditch it because I can't stand anxiety! I will keep taking the Baclofen though, 20 mg a day for now.

Thanks again....Gretchen :)

[Infrared Charlotte]

Hi gdmcor, I too have SPMS and NO not on any ABC's. All i take at this time are meds to help my migraines & lyrica for nerve pain. I also smoke MJ for the pain (sometimes it works) . I am going for anothet MRI in few weeks, I have a new neuro so i am hoping that he can help with the pain. Thanks & peace