Primary Progressive and disease -modifying drugs ???

Tell us what you are using to treat your MS-- and how you are doing.

Primary Progressive and disease -modifying drugs ???

Postby Smilingface » Sat Jul 21, 2007 6:53 am

Is there anyone on this forum whose primary progressive disease is being treated with Copaxone, novantrone or a high dose interferon? There are some sporadic studies of support out there with at best partial success.
How about anyone on potential oral meds for PPMS?

I am five months into CAP and six weeks into fumaric acid (BG-12). I have had slow progressive disease for 5 years with finally a confirmed diagnosis last December. My lesions are all cervical. So far I have made a significant gain in fatigue compared to one year ago. I believe this is likely due to the antibiotics although the gain was not evident until I started the fumaric acid.

I feel that the exercise, Yoga and my supplements are all contributing in a positive way. I have yet to put the brakes on to the natural course which for me is primarily a walking disability and slow loss of use of my right hand. I keep trying ..... I would love to hear from any of you struggling with slow progressive disease!
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Postby SarahLonglands » Sat Jul 21, 2007 11:09 am

Smilingface, forgive me for butting in here, but I was under the impression that novantrone was used for people whose disease was rapidly progressing (or very, very active in the case of RRMS.) Copaxone is maybe a different matter, because some people are given it for progressive disease in the US, but not in the UK where it is judged only to be beneficial for relapsing disease. If you wanted to try one or the other in addition to CAP,I would certainly go for copaxone, since novatrone is a form of chemotherapy.

You say you have made significant gains in fatigue since starting CAP and fumaric acid. This was one of the first things I found, along with cognition, which affected me very badly. Now, you also say all your lesions are cervical, so you are likely to show much longer before you show any gains in your arms and legs, because the lesions in the cervical spine will be causing a bottle neck. My lesions were all, or nearly all in the head, just starting to go lower, so there was plenty of space to find new pathways to bypass the damage.

Now, you might get a quicker response to your question if you also ask it in the copaxone and novantrone forums........Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Limted use in PPMS of novantrone and copaxone

Postby Smilingface » Sat Jul 21, 2007 2:01 pm

Anecdote, You are welcome to butt in anytime! Novantrone was actually mentioned by my neurologist as a possibility for me way before I had enough knowledge to ask why he would even suggest it. It's possible at that time he was not entirely convinced that I had PPMS, because my diagnosis was probable PPMS or he really didn't want to guess on the rate of progression. The next visit 21/2 months later after a better MRI he changed the diagnosis to presumed PPMS. One month later on the visit to discuss treatment options, he said his drug of choice was rituxuan, but it was not available. But the anti-biotic trial was an option. Fumaric acid was later added to the regime at his suggestion. I did talk to another MS expert neurologist via phone who said he would consider copaxone or high dose interferons for me. I believe the experts at the MS centers often are comfortable to take unusual treatment paths. I would love to travel to see more experts but our health system makes it really tough for patients to do that. Thanks again for your comments, they are always helpful.
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Postby SarahLonglands » Sat Jul 21, 2007 4:02 pm

Well, my "expert's" treatment of choice was nothing, except a dose of IV steroids should I ever need it, but make an appointment with the MS nurse to find out what was in store for me. I never did and I haven't seen the "expert" since.

I think very few neurologists like stepping outside their own garden.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mrhodes40 » Sun Jul 22, 2007 8:21 pm

Smiling face interferons are antichlamydial additionally. If they are an option for you offered by your doc and you are doing antibiotics based on the idea that MS is a germ that might be a good choice.

I take copaxone and have for many years. I became SPMS so I added antibiotics to that regimen. But if I had a choice now I think I would add the interferon approach because no one knows exactly how the modulating of the immune sytem cop does would impact healing. On the other hand copaxone is very mild in terms of side effects.

I have not had especially good luck with cop even preventing SPMS ( I could jog when I started it 10 years ago) I have no idea how it would impact PPMS. Keep us posted on your situation
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