Burned out on MS meds

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

Burned out on MS meds

Postby flora68 » Wed Nov 24, 2004 10:40 am

PAST MS TREATMENT
Avonex: weekly IM injection
Discont'd after about 3months due to side effects

Copaxone : daily subQ injection
Also discont'd (on 05/18/04) after about 3 months, due to side effects.

CURRENT MS TREATMENT
No MS meds since that last Copaxone shot 5 months ago.

I'm no longer takinganything for MS, nor am I likely to try anything new in the foreseeable future. My course of MS seems pretty stable to me so far, and maybe a little better without CRABs than with. The side effects and potential 30% reduction in future disability just wasn't worth it to me. BTW, my situation may be slightly atypical, in that MS is not my primary health problem (long story). That being said, I am considering accepting an invitation to a program about ANTEGREN next week, just to hear about it, since it was approved by the FDA.

I had already made some dietary modifications before MS for other health reasons, (little or no red meat, more fish, soy, and chicken, more healthy oils, supplements, etc.), and since my diagnosis I'm making more of a point of it, but I'm nowhere near the full Swank regimen.
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Postby LindaR » Wed Nov 24, 2004 11:25 am

Flora, I am sorry to hear that you discontinued your treatments due to side effects. To me, 30% is better than 0% and I am one of the lucky ones who only experienced mild side effects with Avonex. I have been taking is for about 9 months and now the worst of it is a head ache the next day with some mild joint aching that is easily treated with Advil. Now that Antegren (or it's new name Tysabri) has been approved you might have another option. As an FYI...my first attack with MS was in January of 04 (optic neuritis). My MRI revealed 14 leasions! That's 14 silent attacks that I had without experiencing anything. MS is silent so even though you might be stable physically, you can't be sure what is it doing silently.
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Postby flora68 » Wed Nov 24, 2004 2:45 pm

Thanks for your reply, Linda. I realize that one never knows for sure what's happening with MS. Or what will happen, with or without treatment. When I was first diagnosed, naturally I read everything I could get my hands on about MS, especially about treatment. The companies who sell the medicines for MS, as well as the NMSS, which is funded by same, insist that the sooner you start treatment, the better. However, many of us have had experiences with these meds that indicate that they're definitely NOT best for everyone. not just in terms of side effects, but in terms of worsening MS symptoms.
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Postby LindaR » Wed Nov 24, 2004 2:47 pm

Flora, I agree with you. Every case of MS is different and each person's choice is their own. Good luck!
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Postby RevLeonidas » Thu Dec 02, 2004 3:25 pm

flora68 wrote:[no]one ever knows for sure what's happening with MS. Or what will happen, with or without treatment.


I've been gathering data in support of the premise that MS is a metabolic disorder due to a dietary, malabsorption, or an elimination dysfunction. Thus, putting outside agents into a body like the ABCR drugs, exasperates the condition.

How about 60%-80% of the people who have positive results from the ABCR drugs? Three different doctors have told me that LDN works "because of the placebo effect; with neurological disorders, this just happens." Could the positive effects that people claim to get from the ABCR drugs be due to this same misunderstood healing mechanism of the human body? If a pill can have a profound psychosomatic effect, what could a discomforting injectable agent do?

If it hurts it HAS to work: right? For some folks anyway.

Since no one really knows what will happen with our without treatment, but they (the experts) do suspect that these treatments CAN harm a body, then I opt to go without treatment except for a specialized diet.

It's funny how my physiological condition has improved since I stopped taking Avonex, and the two MRIs I've had since have shown a reduction in lesions.., but that's just in my head.
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Postby SarahLonglands » Thu Dec 02, 2004 4:17 pm

And, of course, the vast reduction in lesions and even total disappearance I have had since starting the antibiotic treatment is just in my head! I don't know what my neurologist thinks: he is avoiding contact.

Sarah :?
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Postby OddDuck » Fri Dec 03, 2004 4:22 am

Sarah,

Yea, what is it about the neuros avoiding contact with you when you DO happen across something that worked?

I'm getting the same thing. First, it's amazement, then can find no flaws in my research, then it's pacing the floor and not knowing how to prove what we've found, then it's lack of contact totally.

Kinda funny, if you ask me!

Deb
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Postby SarahLonglands » Fri Dec 03, 2004 5:11 am

Deb,

I only posted that late last night when replying to PM, but it is perfectly true. I have had only two meetings with that man, was promised another once I had been to Addenbrookes to see an MS nurse, but nothing since, initially because I refused to go and see the nurse, I suspect. The first meeting was arranged privately, much to my horror, because David was so worried about me. I pointedly wrote him out a cheque and paid for it then and there, just couple of weeks before my arm completely gave out. At the time I was completely out of it, holding on to the wall to make my way to the MRI suite, for example, but convinced I was getting better(!) Maybe he despaired of me, as being beyond hope. Perhaps being a clinical neurologist is so depressing that they would all benefit from taking a sabbatical once in a while, for both their benefit and that of the patient.

However, since David unearthed the antibiotic treatment and put me on it, you would think that at least he would show some interest, wouldn't you? I know for a fact that he has seen at least the first follow up scan, because he walked into the radiologist's room when it was being studied. Now he has even developed a tendency to make a sudden departure from the Medical Institute if David comes in for lunch. Strange. :?

Sarah

PS: I hope we aren't sabotaging this thread too much. :oops:
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neuros

Postby dizzee » Sat Dec 18, 2004 8:40 am

hello there, newbie here - please forgive any unknown impoliteness along the way. was reading about others' regimens then got caught up in neuro slagging and noticed addenbrookes (don't know if this should be in a personal mail or what) prof Comp. is my neuro and seems to metaphorically pat me on the head each time I put off getting onto CRABs. I've been very lucky and have had few symptoms - potential side effects haven't outweighed symptoms so far. clinging onto walls only seemed to last for a few days, whereas potential headaches etc etc would be lifelong. I've spent too much energy worrying about whether I should get onto treatment of some sort. this site has put my mind @ rest, thank you for that.

is it Sarah/Anecdote that also visits addenbrookes?
whilst i feel my neuro and I aren't on the same side/working from the same hymn sheet I have to thank him for organising another MRI for me as all records are chucked away after 7 yrs it is probably clinically useless, but my first diagnosis one (11 yrs ago) provided me with an awful lot of source material for photography/printing and fine art projects. I hope this second one will do the same,

cheers prof. Comp. (i would feel guilty about the waste of resources but figure I've saved the NHS about £45,000 by not going on big meds.)

am I wrong?

d.
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Postby SarahLonglands » Sat Dec 18, 2004 9:31 am

.
Err, no, dizzee, you are not wrong in my opinion, because the CRABS drugs will only at the most reduce the number of relapses for someone with RRMS. Other people might say differently, of course. There are many other things available, including my own treatment of choice which you will find detailed here in the regimens section, which has improved my quality of life immeasurably for a fraction of the cost. Having been diagnosed with rapidly advancing progressive MS the CRABS drugs ware not even considered for me. It was just a case of going home and waiting for what would happen. As a professional artist who had lost the use of her right hand this was not an appealing option.

We don't have the same neurologist by the way, since I live in Bedford, where the neurologist is based at Addenbrookes but visits weekly. I would have had to go to Addenbrookes to see the MS nurse but chose not to. I am now being treated by one of the two microbiologists at Bedford General, who also happens to be my husband.

Welcome to the site, by the way, you should find much useful information here.

Sarah :)

.
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UPDATE had to get over the burnout (another long one, sorry)

Postby flora68 » Sat Dec 18, 2004 2:48 pm

flora68 wrote:I'm no longer takinganything for MS, nor am I likely to try anything new in the foreseeable future. My course of MS seems pretty stable to me so far, and maybe a little better without CRABs than with. The side effects and potential 30% reduction in future disability just wasn't worth it to me. BTW, my situation may be slightly atypical, in that MS is not my primary health problem (long story). That being said, I am considering accepting an invitation to a program about ANTEGREN next week, just to hear about it, since it was approved by the FDA.
.


Well, since I posted that bold, uppity plan, :roll: my situation has changed materially. MS-wise, I mean. :( Oh, I definitely expected it to recur sometime, of course, and I did suspect that there might already be some tiny evidence of new MS activity on a new MRI, if I were to have one. But I guess I assumed that my physical exam would still be, you know, OK. Or OK enough. Essentially unchanged. I'd had paresthesia on the left since the beginning, and it just might have gotten a little worse. Maybe.

:roll:

So I wasn't worried when I went in to see friendly, upbeat neurologist, "Dr. Smiling Bowtie, the MS Genius" :D a couple of weeks ago, mostly to ask him if he had any valid reason for me not to try LDN.

I did kind of expect a semi-hard sell on Tysabri, because Dr. Bowtie gives talks about it for NMSS. But I was full of positive resolve and sales resistance, since I was determined not to start any brand new drug for at least the first year or so, even for MS, as long as my case was basically benign and stable. Knock wood. I was just looking forward to getting started on LDN. But first I also had to make sure that Dr. Smiling Bowtie :D thought my RRMS was "basically pretty stable" too, otherwise all my fiendish plans ...

Well, to finally cut to the chase, during the routine neuro exam, I was unprepared 8O to find myself really struggling with or even flunking several of the tests I always do OK on, especially re:hand-eye coordination and walking. Wow! And I was really trying too.

Yeah, uh-oh. I may never heel-toe-walk again! :wink: But I pretty much keep off tightropes anyway so who cares? My clumsiness was actually kinda funny, but obviously disappointing too. But Jolly Dr B. reassured me that flunking the 'heel-toe thing' isn't all that meaningful in anyway, especially in my case, with my train-wreck of a lumbar spine. So we blew that part off.

But the hand-eye problems; that's way above the lumbar disaster level, and couldn't be caused by anything but MS. Ap-cray.

Still it was nothing real dramatic, and it's just one sided (left, my most affected side anyway). But I could see that things have gotten worse recently without my specifically noticing.

So after a lively discussion with the doc, I changed my mind about waiting "at least a year" before trying Tysabri. Things aren't "stable" now, and suddenly, rather than waiting around a year or so, I'm feeling a need to get all the help I reasonably can ASAP! Which means to at least try Tysabri, assuming insurance will cover it. Still waiting on that authorization. After awhile on Tysabri, depending how things are going, maybe add LDN.

Unfortunately, I didn't get to go to either of the local lectures about it, (I had surgery that day) but I did read everything I could find about it and related issues for literally hours every day, and still do. (I'm recently semi-retired, so I've got the time, and I read kinda slowly anyway.)

So we'll see what we shall see.

"Life is what happens when you're busy making other plans."
John Lennon
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Postby NHE » Sun Dec 19, 2004 3:55 am

RevLeonidas wrote:Could the positive effects that people claim to get from the ABCR drugs be due to this same misunderstood healing mechanism of the human body? If a pill can have a profound psychosomatic effect, what could a discomforting injectable agent do?

This seems unlikely. The clinical studies are designed to take the placebo effect into consideration via a double blind study where all patients are treated the same and the examining neurologists lack information as to which group a patient belongs. Granted though that with IFN-ß, the patient will more than likely know that they're not in the placebo group due to the side effects. However, I believe that this information is usually not shared by the patient with the attending neurologists. If it was, then that might bias the study's outcome. Moreover, had the studies been performed such that they did not take the placebo effect into account, i.e., compared a trial drug such as IFN-ß to an untreated population of MS patients, then the resulting treatment effect would have likely been much greater.

NHE
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Postby carolsue » Sun Dec 19, 2004 7:52 am

To dizzee and others who have decided to wait before going on a specific therapy:

There are lots of reasons you may not want to go on a CRAB, and it is a personal decision that I truly respect. My personal decision was to go on a CRAB immediately after dx--and this despite my symptoms being very mild. I figured that MS is a nasty disease and that as long as I could tolerate the therapy, I was going to try and slow this disease down as best I could. One piece of info that went into my decision to NOT wait, was the followup study on copaxone trial subjects:

"One of the key questions was how the group that started on Copaxone compared with the patients who spent 30 months on placebo. We discovered there was a consequence for delaying therapy," said Dr. Johnson. [excerpt from this article:]

http://www.docguide.com/news/content.nsf/News/8525697700573E1885256B9F004B83F5

Again, there are lots of reasons NOT to inject yourself with poisons--esp. with their high cost and limited effectiveness--so believe me, I am NOT questioning anyone's decision to forego or stall CRABs. Just thought I'd throw that info out there, in case you didn't know about it.

carolsue
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