Intranasal Foralumab, anyone?

[agate]

Foralumab? This is new. You can't say the drug companies aren't addressing themselves to creating new MS drugs. This one is self-administered nasally. The small test mentioned in the article (um, 6 people) involved people with nonactive SPMS. All but 1 (of the 6) showed improvement.



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[flatcap]

According to its maker, "Foralumab is a fully human anti-CD3 monoclonal antibody (mAb) for the treatment of Crohn’s and neurodegenerative diseases," presumably in general.

It does not appear to have been developed specifically for MS.

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I'm no expert, but the idea of these one-size-fits-all treatments seems pretty far-fetched to me.

[agate]

That may explain why it can be rushed onto the market on the basis (apparently) of one tiny study.

Maybe the drug companies have been under pressure to come up with something for SPMS because so far they've behaved as if SPMS just didn't matter.

EDITED TO ADD:

It's too late to edit my original post but I need to correct something I said there. I misstated some results. What the article actually says about improvement is:

All patients with SPMS in the study (n = 6) experienced improvement in at least 1 clinical measure of Expanded Disability Status Scale (EDSS), pyramidal score, or Modified Fatigue Impact Score (MFIS), and all but 1 (5 of 6) showed improvement on microglial PET imaging at 6 months.

[agate]

I'm not sure how trustworthy that first link (from a site called managedhealthcareexecutive.com is. It's not a site I know anything about, and in general I'm not knowledgeable about the business-news Websites. However, I've found quite a number of other business Websites also indicating that this drug has FDA approval now. For instance:

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flatcap, I looked around for information on the other uses for this drug, and apparently it's been shown to be not effective for Crohn's disease. Not very encouraging.

[flatcap]

The drug having been proven ineffective to treat the disease for which it was designed explains a lot. I suppose they have to sell it to someone.

[agate]

The drug having been proven ineffective to treat the disease for which it was designed explains a lot. I suppose they have to sell it to someone.

LOL! It might as well be us. After all, we're just sitting around with time on our hands and waiting for someone to come along with something, ANYthing, that might free us from this increasingly narrow world we're living in. Many of us are probably desperate enough to try just about anything.

There was a fad years ago for the "early milk of a cow" as a cure or treatment for MS. There was also some snake venom treatment or other. And I think they're still working on the worms you'd need to swallow (the helminth treatment, I think it was called).


Ran across another business Website with news about this (and there are several other such Websites):

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[flatcap]

There was also LDN, although you might say the evidence it works was a bit more "scientific" (it was/is mostly, if not solely, anecdotal, actually). LDN was recently mentioned on this forum, but I don't know if it's still a 'thing' like it was a long while ago.

I have thought about trying LDN myself and might someday ask my neuro about it. I kind of doubt he writes it, though, and I am not sure there is a compounding pharmacy in our area. I am also unsure it would really be a good idea for me to take LDN. I don't know enough about it.

[agate]

I'm pretty sure LDN still has its devotees. Sally was among them if you remember her. LarryLDN has been back here not so long ago. I'm assuming he's still enthusiastic about it.

So many people over the years have praised it that maybe I'm just assuming it must have something going for it. And whatever works....Even if people are deluding themselves into thinking it works because they want it to work, it's still having a positive effect--so long as it isn't doing something harmful, and I doubt that LDN is harmful as it's been used quite often (in the regular dose) to treat alcohol dependency.

Just about any MS "remedy" has to be taken seriously because apparently it's such a weird disorder that nobody has much of a notion about what might work. Groping around in the dark.

[flatcap]

I don't remember the screen names of the LDN boosters on board. I saw the topic discussed on other forums but don't recall any screen names there, either. I might be able to had I joined the discussions, but I did not. I was a lurker.

I also don't recall exactly what people thought they got out of LDN. I do remember seeing a link to the website of a patient who claimed she had regained various functions, but I don't recall which ones. TBH, I never believed it anyway. No direct evidence for remylination was presented, nor were any papers supporting the idea referenced on the site. I also vaguely remember people claiming LDN prevented or delayed progression, but I did not believe that, either. I could not see how they could have known it did. I do not recall reading it did anything for relapses. Maybe it does something to reduce day-to-day symptoms. I really don't know.

If all LDN really does is induce the placebo effect, you're right, that's fine. Whether it is "safe" is not my concern. I am pretty sure it would be for me. I might give it a whirl someday, but I try to minimize the number of drugs I am taking, so my default position on any med is to take it only if I have to. In addition, in general, I prefer they have some idea of how the drug works. I realize they almost always say they don't really know, but they usually at least have a theory.

From my perspective, they don't know much about what is really going on with MS in the first place. I remember reading a paper in which it was stated they observed lesions of distinct and different morphologies in the same patient, which in turn strongly suggested more than one disease process at work. I am not even convinced the animal model is valid. And I don't believe their groping around in what amounts to the dark for a cure or truly safe and effective treatment is getting us very far. I am especially unimpressed by the meds they are selling as treatments for such wide ranges of ailments. I don't believe that can possibly work. What I see are drugs that are relatively ineffective for MS, and that come with a lot of undesirable side effects, some of which can be fatal if they occur. Then, there is their cost. The prices for the DMTs are obscene.

In the end, though, it's like you said: whatever works...if you can afford it.

[agate]

That's been my approach too. Whatever MS is going to do to me, it's going to do with me, and my task is to work around the obstacles it puts in my path. The biggest ones so far have been (a) infections of any kind and (b) falls. People who develop some serious "comorbidity"--like cancer, say--would have a much harder row to hoe than I've had. I've been lucky so far. My one big problem was kidney stones for some years, plus a surgery for removing a parotid gland--but aside from that and some bad falls and bad infections, I've got around a number of MS "issues." Many really severe vision problems were solved by just switching from contact lenses to glasses, for instance. Some bladder problems have been remarkably helped by pelvic floor muscle exercises. Now I'm starting a campaign against my increasing arm weakness by lifting 1-lb. weights every other day. I'm hoping to graduate to 2-lb. weights soon but I'm not quite there yet.

This kind of thing-- dealing with each problem MS creates in a practical way, and if one way doesn't work, trying another, and another--, is the only "effective" treatment I know of for MS. Just trying to squeeze some useful time out of each day is where I am, and the theories and treatments and new drugs/procedures (stem cells, for instance) are way out there, as remote and cloudy as some dim constellation glimpsed in the sky. I try to pay attention to them but usually don't climb onto the bandwagon.

Glatopa is the current exception. I'm still doing those shots but half of them leave the injection site burning quite painfully for several hours. At least the other side effects have stopped--"arthralgia" pain keeping me awake at night was the main one.

[flatcap]

I would say my most distressing symptoms are fatigue and falling, which I have done several times now. I have so many close calls every day, it isn't even funny. Oddly enough, I am better off when I am walking at a normal clip (normal for me, that is). It is when I am moving slowly or standing still as one might at the kitchen counter that I am prone to losing my balance. All of my falls have been at home. (Knock on wood.)

A person finds ways to work around their symptoms. For instance, I now sit for a shower instead of standing so as not to fall. I also shave holding the razor with both hands (actually, I use a t-edger that is ordinarily used for haircuts). I also brace my hands against my face, neck, or chin, or my arm against the cupboard (I can brace my arm against the cupboard on the right side only; there isn't one on the left, hence I brace my hands against my anatomy on that side). In addition, I use an electric toothbrush. I cannot control the movement of my arms back-and-forth when brushing manually. Even with the powerbrush, I still use both hands. That might be the Parkinson's, though, or perhaps a combination.

I tried Copaxone back when there were only the CRABs for MS, but I had an allergic reaction to it. I also tried Rebif, but that was like getting beaten up all over. I do not have a high tolerance for pain, so I quit using it. That is the extent of my experience with the DMTs.

The only significant comorbidity I have is Parkinson's. It could be worse.

[flatcap]

Agate, you mentioned the bee venom business, and I brought up LDN, so I did a little poking around and found this article:

"Bee Venom Therapy and Low Dose Naltrexone for Treatment of Multiple Sclerosis"

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I thought it was pretty funnily written.

[agate]

^{Hmm. I couldn't begin to address myself to the science in that article but agree that it is funnily written. In fact, it may be a translation from Russian, or else the author, who is reportedly in Russia, wrote it with a limited knowledge of English and could have used a better editor/proofreader.}

[flatcap]

I was once asked to review a journal article in my field written by authors for whom English was decidedly a second language. The paper was nearly unreadable. I will not reveal the nationality of the authors here except to say that, in my opinion, they are much better at copying things than they are at inventing them.

I returned the article, saying it needed substantial language editing before publication. I went further to add that I had seen many such papers in publications, including theirs, with the same issue unresolved. For whatever reasons, many make it into print anyway. The problem even arises without raising alarm in things like doctoral theses. I also ranted about the double standard: English speakers simply do not get away with such things.

The editor replied by asking me if he could publish the content of my email as a letter in the next issue. Having seen the same problem many times, he was very enthusiastic about it. Evidently, it struck a chord with him. I responded by saying I would probably be fired if anyone where I worked ever saw the letter. Such is the nature of "political correctness." He understood and did not publish my email.

Sometime later, I was run out of my job by HR and into long-term disability status. Apparently, I was missing 'too many' work days, even though I never fell behind in my work. Overhead employees such as HR personnel were largely protected in such situations. Direct employees in the science were left to go pound sand. For us, or at least for me, the ADA was a joke. Even my manager, who saw me as practically irreplaceable, wouldn't stand behind me. So much for being able to count on people.

I should also add that I never was replaced. I have watched from afar, and my lab no longer exists. Neither does anything remotely resembling the instruments, not anywhere on the site as far as I can tell. I am guessing they go outside the lab for the measurements I used to do. They all did that for many years before I arrived on the scene. I hope they are satisfied, although I doubt they are. Nothing can substitute for working together in the same lab.