Always an Anecdote

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

Postby dignan » Wed Aug 29, 2007 8:25 pm

Notdoneyet, you mention not seeing the results from the minocycline + copaxone study. Here is an abstract with those results from this year's AAN meeting:


Glatiramer Acetate Combined with Minocycline Reduces the Number of T1 Gd-Enhancing and New T2 Lesions Compared to Glatiramer Actetate Alone

Luanne Metz, David Li, Anthony Traboulsee, Vancouver, BC, Canada, Mary Myles, Edmonton, AB, Canada, Pierre Duquette, Jean Godin, Montreal, QC, Canada, Michel Constantin, Montreal, PQ, Canada, V. Wee Yong, Calgary, AB, Canada

OBJECTIVE: To evaluate the add-on effect of minocycline in subjects initiating treatment with GA.

BACKGROUND: Glatiramer acetate (GA) reduces clinical and MRI activity in relapsing-remitting multiple sclerosis (RRMS). Recently minocycline was shown to reduce enhancing MRI activity in a pilot trial. Animal studies support an increased benefit from the combination.

DESIGN/METHODS: RRMS patients (n=44) with one or more T1-enhancing lesions on their screening MRI were randomized to either GA 20 mg daily + minocycline 100 mg twice daily or GA + placebo. Subjects were assessed clinically and by MRI at screening and months 1, 3, 8 and 9. The primary outcome was the total number of T1 enhancing lesions at months 8 and 9.

RESULTS: Forty subjects completed the study. Two subjects from each group discontinued study drug. Groups were balanced clinically at baseline except for greater T1-enhancing lesion number in the GA/minocycline group (median 3 versus 2; mean 7.62 versus 2.43 (p=0.07)). Despite this imbalance treatment favoured the GA/minocycline group. At months 8 and 9, the number of T1-enhancing lesions was reduced by 63% (mean 1.47 versus 2.95; p=0.08 ) and the number of new T2 lesions was reduced by 65% (mean 1.84 versus 5.14; p=0.06), compared to GA/placebo. Relapse risk was reduced by 42% in the GA/minocycline group (0.19 versus 0.41; p=NS). Treatment was safe and well tolerated.

CONCLUSIONS/RELEVANCE: A trend to significance on both primary and secondary end-points, despite imbalance at baseline, reflects a consistent pattern of benefit favoring the combination of GA and minocycline. As minocycline is a safe, well-tolerated and inexpensive therapy a further study of this combination in RRMS is warranted.

Supported by: Teva Neuroscience Canada.

Tuesday, May 1, 2007 2:30 PM
Scientific Sessions: Multiple Sclerosis: Clinical Trials I (2:00 PM-3:30 PM)
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Postby SarahLonglands » Thu Aug 30, 2007 3:52 am

Colin, yes, David verified last night, both he and Stratton having been in correspondence with Metz, that the problem of keeping recruits bothered her.

Neurologists will always be happier at the moment to have someone in a trial taking an approved MS drug as well. Many will still only accept the approved drug, so it must be a good way of starting down the road.

However, the choice of Teva and Copaxone worries me. The best option if she has done any serious research, is an interferon, being slightly anti-chlamydial in itself. As gwa said above, "Teva is partnering with any trial it can find in order to keep its market share of Copaxone from slipping away." So they probably offered the most cash for the trial: that's not good medicine.

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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The suspense is killing me ......

Postby notasperfectasyou » Fri Oct 19, 2007 9:01 am

Anecdote wrote:I keep thinking that I should really send him one of my prints, done since recovery, signed and with a neat, handwritten note. I've been thinking abut this for over a year, but can't quite bring myself to do so. That is really silly, isn't it, because, who knows, it might make him sit up and take notice. What do you think?

Sarah :)


Sarah,
During this lull, while Kim and I search for a doctor, I've been trying to catch up on the threads of others who have gone before us. Did you send the neuro a print? I'm not sure what I would do because I'm more distant from the situation, but I'd base my actions on what I truly believed the outcome would be.

Anecdote wrote:The following is a little conversation from CPN HELP, posted here because I think it is important not to use walking aids which effectively are anything but. Everyone who uses the antibiotics forum, especially, is trying to get away from the disease. You don't want to manage one thing but end up worse in another way.


I thought it was cool to read about your Leki Treking poles. I bought Kim a pair of them this summer when we were at the Grand Canyon (yup, we picked the exact wrong time to go). Your comment above was not clear to me and wanted to verify if there was something about treking that was not good.

I really like Isola dei Pioooi, what was the inspiration?

Did you find Tinidazole to be better than Metronidazole? Are there other substitutes for the three antibiotics? Just wondering. Thank you for keeping this thread up, I really appreciate having the chance to read it.
Ciao,
Ken
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Postby SarahLonglands » Fri Oct 19, 2007 11:03 am

Guilt strikes: I still haven't replied on your thread! One excuse less now, because my wrist has recovered enough for me to type with both hands. I still haven't managed to make myself send my neurologist a print. Maybe because I just don't like the way he consigned me to the rubbish tip, I don't know. I think that if I was sure it would make him take notice that people with such severe progressive disease do stand a chance of recovery, I would. He did smile and wave at David across the hospital dining room the other lunchtime, whereas previously he has tried to ignore him, so perhaps...........

When I was talking about walking aids I meant such things as walkers which aren't high enough for people above a certain height, meaning they can't walk without stooping forward. Trekking poles are good because they encourage you to walk properly, in my experience. Essential on rough ground, they are useful in town as well, if only as a warning to others.

Isola dei Pioppi was based on an avenue of poplars on an island on Lake Transimeno, in Umbria, Isola Polvese. I take photographs then store ones I think I might one day use part of: the only things I hoard, really.

Tinidazole I found to be much more palatable than metronidazole. Its newer than metro, although not that new, and they seem to have ironed out a lot of the worst aspects of the first, whilst still being as effective. You don't get that awful metallic taste nor fall prey to depression or tearfulness as easily. David has never prescribed it to anyone except privately, because it isn't included in the NHS recommended abx. This is only because of cost, because it is still under patent here. My GP won't prescribe it, so I got David to do so.

I'll be good this weekend!

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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Postby gwa » Fri Oct 19, 2007 11:40 am

Sarah,

Can doxy and azith also cause a metallic taste? I haven't taken the Flagyl yet, but have a metallic taste most of the time.

With all of the vitamins and NAC, the taste could be coming from anywhere.

gwa
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Postby SarahLonglands » Fri Oct 19, 2007 2:26 pm

Difficult to say, with al the supplements. I never got it from doxy and I never took azithromycin.

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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Postby daisy » Tue Oct 23, 2007 11:01 am

GWA - Yes the azithromycin could cause the metallic taste - any of the macrolides and quinolones can. The reson as I understand it - is the drugs reach REALLY high tissue levels. So high - you can taste the drug. Some doctors view it as a good things when their patients get the metallic taste - it means the patient is getting a lot of drug into the body tissues to fight the infection.

One tried and true way to handle the metallic taste is to eat something with fat in it when you get the taste. Also, citrus juices also seem to help.
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Postby SarahLonglands » Tue Oct 23, 2007 1:57 pm

The thing is, I never get it with roxithromycin, which has more tissue penetration than anything!

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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Postby SarahLonglands » Sat Mar 01, 2008 8:54 am

I have decided, since I have finished my regime but am still getting improvements to move to the Antibiotics forum, so here I go, together with a link back here to where I started back in August 2003.

Well, its now March 2008 and I have not had an MS episode since that time, whereas prior to that, with rapidly advancing secondary progressive disease I was deteriorating by the day with the odd relapse still thrown in.

Coincidence? I don't think so.

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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Postby robbie » Sat Mar 01, 2008 9:37 am

So do you think you have beat it Sarah. No more ms for you. Your neurologist must really be impressed.
Had ms for over 19 years now.
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Postby SarahLonglands » Sat Mar 01, 2008 10:12 am

Unfortunately, Robbie, I haven't seen my neurologist in all that time. He was last seen running out of the radiologist's room, screaming "I can't look at this!" when asked to view a new set of scans not ordered by him but the radiologist. I feel sorry for him for not even being willing to look at the evidence.

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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Postby Notdoneyet » Sat Mar 01, 2008 12:40 pm

Hi Sarah,

Congratulations on finishing the antibiotic regime. I haven't been on the site too much lately, so some of these developments are passing me by, but you continue to be an inspiration to me.

I've been back to the full regime after stopping and starting again last summer. I must have a huge load of bacteria, (24 years since my diagnosis), because it sure seems to be taking a long time to clear. There are little signs that convince me that I'm still killing bugs, though. I sharpen up quite significantly when on metronidazole and I have consistent itches that go away when I'm off antibiotics, among other things.

The main thing is that I've now been almost four years without any relapses. I'm feeling much better and I'm getting on with my life again. My business is expanding, I'm finding new balance improvements through yoga and I'm looking forward to another golf season. Four years ago, I thought I was finished golfing. Now I'm considering a membership at a mountainside golf course, with more challenging terrain.

Way to go Sarah and thanks again for helping me get a life back,

Colin
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Postby robbie » Sat Mar 01, 2008 1:07 pm

Way to go Sarah , you must feel like a god in some ways. Everyone here should try this. Why take all the risks of these other harsh drugs like the chemo when you can just do it this way.
Had ms for over 19 years now.
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Postby SarahLonglands » Mon Mar 03, 2008 2:44 am

No Robbie, I'm just me!

You are right though, people should try it, certainly when nothing but chemo does anything, but also before, maybe in conjunction with avonex, rebif or betaseron. People in the very early stages of the disease have a chance of just stopping it dead in its tracks, whereas people like you and I have a harder job.

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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Postby SarahLonglands » Mon Mar 03, 2008 2:51 am

Hi Colin,

Goodness, the mountainside golf course sounds really exciting! I think it could be very good for you in terms of helping your brain make new pathways, keeping it plastic. I am taking up my 'cello again for the same reason, despite the fact that it tires my hands if I play for too long, stopping me painting until I recover. I know you can't do this with mountainside golfing, but a little and often seems to be the way to go with the 'cello.

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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