Albuterol add on therapy

[Suebee]

CVfactor, glad to hear your legs are feeling good! That's wonderful.
Having fun, good suggestion with Medipot solution. I buy my distilled water by gallon too, and keep under bathroom sink for when I need it. BTW, my kids beg to watch when I use Medipot. It looks so strange to see water pouring in one nostril and coming out the other. You have to find fun where you can I guess!

[zjac020]

Have you tried low dose benadryl

Hi there,

I stumbled on your thread when googling something else about MS.

I was diagnosed two years ago after the first and only relapse (weak right side of body, with drop right foot for about 8-10 days). Havent had any sign of activity (no more relapses and no advance in the brain and cervical lesions found).

I take LDN and lots of supplements but am not too much of a believer in DMDs (though i respect everyones opinion and choice considering the unknown etiology of MS).

Im just wondering, given that there is a good scientific understanding amongst those contributing to this discussion, does benadryl have anything in common with the astham medication you are reffering too? I ask as ive seen others have benefit with this approach (low dose benadryl), its very rare to find someone who has MS and absolutely no allergies, that has always made me wonder.

Someone here was saying that they have a steady course of relapses, and a family MS history and that they are willing to try other things. Have they looked at what Dr Cicero Coimbra has achieved with high dose vitamin D protocol?

Thanks all,
zjac

[Cvfactor]

I think benadryl is an antihistamine which works an a different pathway than Albuterol. From what I understand, Albuterol is a similar drug to the naturally produced substance norepinephrine. This substance is released by your nervous system at nerve endings to control many functions in the body including inflammation.

So from my point of view there is a disconnect between the nervous system and immune system such that innapropriate immune responses occur leading to autoimmune diseases like ms to occur.

This makes sense to me because every other system in your body is governed by the central nervous system so why would the immune system be any different? I guess the current theory in ms is that the immune system is autonomous but if you look at it from the big picture this seems counterintuitive to me.

Any way, I think the Albuterol add on may re-establish problems with the interaction between the immune system and nervous system. This is what I gathered anyway.

[Suebee]

Zjac,
I would be careful with off label use of Benadryl. Although it is generally considered a "safe" medication
, research has shown a connection to increased risk of dementia in older people in recent years.
http://www.health.harvard.edu/blog/c...k-201501287667

[Suebee]

Minocycline as add on to copaxone ?!?

CVFactor, are you familiar with minocycline as add on to copaxone? There is a study which shld be concluding this month on the combination drug therapy. I think It works by upregulating beneficial T cells in a similar way to albuterol. I haven't researched it's trial history. But it caught my eye after our discussions about albuterol. Here is one recent link that summarizes ithttp://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/minocycline
Hope you continue do well on your treatment protocol. Suebee

[Suebee]

http://www.mssociety.org.uk/ms-resea...ne/minocycline

[Cvfactor]

Suebee,

I was not familiar with the drug you described. I will have to look into this more.

I am aware of other investigations conducted where strong immunosuppressive agents are given for a short period of time (induction) followed by followed by Copaxone therapy (maintenance).

http://www.ncbi.nlm.nih.gov/pubmed/18424479

And there is another one that just recently finished, but the results haven't been published yet:

https://clinicaltrials.gov/ct2/show/NCT01569451

This was the route I was first considering because I did not want to stay on an immunosuppressive drug indefinitely.

But after reading about the Albuterol add-on trial results as well as the supprting science behind it, I decided to go this route.

So far so good.

[Suebee]

CVfactor, I am glad it is working for you. I think the science is there for why it benefits you. I am going to discuss with my drs in future but I won't address changing my DMD treatment with Neuro rt now because I am still recovering from appendicitis. I am much weaker physically from being in bed and it's causing me some anxiety. I intellectually know of course that I just need to heal and then get back to excersing.
With re to minocycline, I have not had a chance to research all the trials, but I did gather that it has risk of negative side effects, including leukemia. It appears to have a beneficial effect on RR and SP. the trials look to have tried different dosages ranging from high dose IV to low daily dose. It appears to be an add on to copaxone that scientists think would benefit an ms patient who is deteriorating rapidly but it does not appear to be a treatment add on that can be used safely for over 3-5 years at this pt. again, that is just what I gleamed from quick survey of trials, and may not be the full story.
I thought the drug did give hope though. It is reassuring to see trials out there working on finding meds for the progressive form or rapid detoriAtion.
Keep us updated on your progress. Suebee

[Cvfactor]

Suebee,

If you have rapidly progressing disease you may want to read this article about induction therapy:

http://www.ncbi.nlm.nih.gov/pubmed/23657788

I cannot say these strategies would be any better than some of the hard hitting drugs such as Lemtrada but it is something to consider with your docs.

Best of luck.

[Suebee]

Cv factor, thanks for link. I wasn't familiar with the term induction therapy. Thankfully, MY rrms does not appear to have transitioned to sp. But I have a family history of extremely aggressive sp and my prior ms attack was very aggressive. At the time, Chemo was discussed as my last option should the steroids not halt or slow the flare. Thankfully it wasn't needed. But I want to keep up on latest meds for sp and aggressive rr so that I can understand my options, god forbid I get that way again. It is much easier to understand when one isn't in the throes of a relapse. Once again, thanks for your input. I can fight ms much better with knowledge I find here. Take care, Suebee

[myoak]

Just to add a couple items about minocycline… there is an active Phase 3 trial which is nearing completion; hopefully, it will conclude and be written-up before the next ECTRIMS meeting later this year. I believe this trial hopes to demonstrate that 100mg of minocycline twice a day decreases the rate of conversion from CIS to MS. ClinicalTrials.gov Identifier: NCT00666887. Minocycline in Clinically Isolated Syndromes (CIS) (MinoCIS).

Next, if minocycline is an area of interest I would recommend a title to Google, “Impact of minocycline and established MS medications on EMMPRIN, a new factor implicated in MS immunopathogenesis”. Minocycline had better effect on this particular factor than fingolimod or monomethylfumarate (MMF). IMO, MMF has comparable effect in MS as DMF, dimethylfumarate.

IMO, Biogen’s delayed-released DMF was developed for patent protection and monetization rather than just using MMF, but JMHO. Concerning the new factor they called EMMPRIN, minocycline had effect but neither fingolimod or MMF did, according to the study.

Those considering minocycline as an add-on or even perhaps, as a monotherapy for MS should consider potential side effects and safety issues. Like most meds it will not be appropriate for everyone.

Minocycline seems to have largely replaced doxycycline because it appears to have a better safety profile. Those familiar with Dr. David Wheldon will recognize these antibiotics as part of the “Wheldon Protocol” a successful MS treatment he developed for his wife Sarah. Their story with links can be found in a MS Auckland issue if you Google, “Multiple News February/March 2013”.

The Wheldon protocol is a regimen consisting of doxycycline (or minocycline), azithromycin (or roxithromycin), and metronidazole, (or tinidazole). There are a few supplements recommended, also. Wheldon believes infection is what initiates and promulgates MS, as I understand him. Maintenance doses of the 3 meds must be taken for a lifetime, that is my understanding.

In the past Wheldon has received criticism I consider vicious, however, I believe he and his wife deserve a fair hearing. I’m not promoting him; I’m turning over every rock in the search for the best for my wife with MS. Come to think of it, that was the same motivation behind his work. Worth a look, IMO.

Several highly-qualified MS researchers are also of the opinion that infection is driving MS. Exactly what infection or infections is the question. It may be a different source in different MSers and require different treatments. Minocycline may help some MSers; others it may not. The Phase 3 study in CIS will add to the body of evidence, I believe.

[Cvfactor]

I just wanted to give an update that I have not had any Ill effects with this add on therapy. If it prevents relapses next winter I'll be happy.

One thing I wanted to explain is that the researchers found a statistically significant delay in the time to first relapse for the combination of Albuterol + Copaxone vs. Copaxone alone.

This is reflected in the p value which was 0.03. In essence the difference in time to first relapse between the two arms would only happen by chance 1 out of 33 tries if the trial was repeated over and over.

In drug trials the p value considered to be statistically significant is 0.05 or 1 out of 20 by random chance.

The method used to calculate time to first relapse is known as survival analysis. This is a different method than looking at the final outcome of how many failures occrred such as you would use to calculate the difference in two outcome measures like flipping a coin.

Here is an explanation of survival analysis and may be of interest because it is used a lot in clinical trials:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3932959/

But to sum up, usually you need a lot of patients in each arm to detect an effect because usually the difference is small. However, if the effect is large the result being compared can still be statistically significant even with a low sample population which was the case for the time to first relapse parameter in this trial.

[Cvfactor]

Double Vision

Beginning yesterday I started having double vision which is a common symptom for a relapse for me. I was hoping this therapy would put an end to this but it looks like it didn't. I'll talk it over with my neuro next week.

[Cvfactor]

So my double vision is subsiding before I was able to get in to see my neurologist. It may be that this therapy doesn't prevent relapses but when they happens it shuts down inflammation.

This is the quickest my double vision resolved without any steroids.

[Suebee]

cV factor , sorry to hear you are having symptoms but glad it's starting to resolve. Suebee