When is it too late?

[marti]

I stopped taking Copaxone awhile back and my neuro was ok with this. I was having some weird reactions and she felt that I was doing fairly well without it (still walking etc), although the opinion is that I have reached secondary progressive. My symptoms were and still are pretty much constant. I've never been able to determine if I was in a relapse since I always had symptoms.

I am almost 65 now and have several other illnesses that all cause the same symptoms as MS. I just wondered if it's too late now to start back on DMD. Would any of them do much good at this age? I know a lot of patients never started taking the shots and some never will. Just fishing around for some ideas here. Thanks.

[hunterd]

have you tried anycomplimentary and alternate medicines? I would say that it the Copaxone worked so well for you. You might want to think about trying it again. Since your symptoms are constant, maybe steroids also. Just my opinion.

[marti]

have you tried anycomplimentary and alternate medicines? I would say that it the Copaxone worked so well for you. You might want to think about trying it again. Since your symptoms are constant, maybe steroids also. Just my opinion.

I'd like to know what kinds of complimentary meds you are talking about. I've become kind of sensitive to most meds and get some strange reactions... even with vitamins. I have Gastritis and I suspect this is the root of the problems. Everything seems to give me gastric problems and more inflammation in my stomach. So I tend to shy away from most things.

I've tried some of the essential oils, but they are really just temporary and don't offer a lot of relief. I do like magnesium oil. Less tummy trouble with that one.

The last time we tried Prednisone my heart rate went up. Dr. said if we ever had to do steroids it would have to be in the hospital in order to monitor my heart rate. So far I have not needed it. Or maybe I did need it, but just didn't ask about it.

I'm just wondering if the shots would do much good at this point in my life. My uncle had MS and never told anyone. Never took drugs of any kind. He lived to be 77, although he was in a home and could not speak or move by that point.

I have a lot of pain. But I also have Fibro, Graves Disease, Osteoarthritis, Costochondritis, Tendonitis etc etc. I'm very small and really have to watch the doses I get of meds. Very easy to get too much.

Thanks for the shout out.

[Jules A]

I'm just wondering if the shots would do much good at this point in my life. My uncle had MS and never told anyone. Never took drugs of any kind. He lived to be 77, although he was in a home and could not speak or move by that point.

Your uncle's experience with MS would be enough to encourage me to try whatever available to attempt to stop progression and possibly avoid being unable to communicate or move. If I tried all the different medications and either couldn't tolerate them or they didn't help then I would be at peace that I at least tried.

[KatieAgain]

Marti

What I think you are really looking for is symptom relief. You have a lot on your plate in terms of diseases. I would think pain is probably your worst enemy.

DMDs come with a price. Each have side effects. Question is are you willing to pay the price?

If I remember, you had issues with copaxone when you were on it. The interferons could make you pretty sick. Tecfidera will most likely irritate your gut which could result in non-compliance. Gileyna is out due to heart issues. Tysabri could potentially help you and your symptoms...but their are serious risks involved. Lemtrada...too new to really decide.

It is a shame you can't take steroids. That would probably help everything you have, IMHO. Have you talked to your doc about Pulsed Steroids in an Infusion Center once a month?

With all those different diseases, it would be exceptionally difficult to determine what is and what is not MS. And don't feel bad...AI Diseases seem to attract others.

If it were me, I would be seeking out the best pain management specialist around and a really good dietician who specializes in AI Disease.

[marti]

Marti

What I think you are really looking for is symptom relief. You have a lot on your plate in terms of diseases. I would think pain is probably your worst enemy.

DMDs come with a price. Each have side effects. Question is are you willing to pay the price?

If I remember, you had issues with copaxone when you were on it. The interferons could make you pretty sick. Tecfidera will most likely irritate your gut which could result in non-compliance. Gileyna is out due to heart issues. Tysabri could potentially help you and your symptoms...but their are serious risks involved. Lemtrada...too new to really decide.

It is a shame you can't take steroids. That would probably help everything you have, IMHO. Have you talked to your doc about Pulsed Steroids in an Infusion Center once a month?

With all those different diseases, it would be exceptionally difficult to determine what is and what is not MS. And don't feel bad...AI Diseases seem to attract others.

If it were me, I would be seeking out the best pain management specialist around and a really good dietician who specializes in AI Disease.

Katie you are exactly right. I am looking for symptom relief. I just don't know exactly where these symptoms are coming from but I think the treatments would be the same no matter which illness is causing them.

I never heard of pulsed steroids. I'll run it by my neuro, although I'm not real confident in her abilities. I went to another doctor for another opinion and she wasn't much better. She kept telling me to see a MS specialist in St. Louis! I can't travel that far and I can't leave my husband that long. He's got serious problems too. I am caregiver and patient and so is he.

I like your idea of a pain management doctor. I'll look into that. I would have thought my rheumatologist would have suggested that already.

Thanks so much to all of you. Good ideas.

[palmtree]

As I read through your posts the one thing that occurred to me was a pain management doctor. It's getting harder to find them. There are pain management places that just have psychologists. I hope your doctor will help you get to an anesthesiologist.

[J-Bo]

I see a PM doc. So far, she hasn't really been able to manage my pain much, but not for trying. She's really been open to almost anything, medication-wise. She's not a pill-pusher, but she has been willing to prescribe anything I wanted to try opiod-wise, as well as all of the others like Gabapentin, Lyrica, Cymbalta, etc. Maybe one could help you, though. I forget--what kind of pain do you have? Muscle? Nerve? Mine's almost all nerve.

I really hope you can find some relief, Marti. I'm always thinking to myself that I could handle the rest of this if I could only stop hurting all the time. Good luck!

[BadAttitude]

Never, Marti. Never too late. It all depends on your expectations for life. How much crap you're willing to tolerate, what your current quality of life is, how much you're willing to give up...

Personally, I intend to be a drain on society to the best of my ability. So if it costs my insurance and/or the government a lot of money to pay for my expensive treatment, well, I'm your huckleberry. I paid into the system when I was healthy, and by God they're going to honor my contribution or collapse trying.

I just went on Lemtrada....and I suspect if it isn't contraindicated for you, it is being recommended for folks with both primary RRMS and secondary RRMS. There is data to suggest that it isn't only preventative, it is restorative. It's been one month and I'm already doing better than I was pre-Lemtrada (knock on wood).

Get tested for Lemtrada candidacy! You'll never know if you don't try.

[marti]

Thanks for all the good advice. I guess you are all saying that it's not too late to start or re-start treatments at age 65. I really wish I could sort this out and know for sure which of my health issues are causing my problems. I'm sure the MS is mixed in here, but it might not be the major contributor. Every doctor gives me different opinions. Very confusing.