Apr 272016
 

Another new drug for MS. What I find interesting about Ocrelizumab is that it was originally being tested as a drug for rheumatoid arthritis but stopped because of an “association” with infection. How far is it shutting down the immune system that it was causing infections? I would think this is a red flag for future cases of PML.

On the plus side taking Ocrelizumab only twice a year has to reduce the risks significantly for dangerous side effects. The article I saw compared it to the safety of Rebif, I am highly skeptical of that claim. Though if it is as safe as they claim it would be a great drug, and everything we had hoped for from Tysabri.

Mar 292016
 

My co-worker is once again heading out to do the Multiple Sclerosis society MS 150 bike ride. I just wish I could walk a little better let alone do a long bike ride! πŸ˜‰


From Chris

Why I Ride

At the Ride Marshal Kick off meeting last year, a MS Ambassador spoke. Her story illustrates why I put in the hours training on my bike, doing safety training for the riders and helping out where ever I can. The Ambassador was lifted on to the stage; there was no ramp for her wheelchair. She told her story about her fight with Multiple Sclerosis. She was not bitter or beaten down, in fact she was quite optimistic due to her spirit along with the assistance offered by the MS Society which she said made a big difference in her life. She ended by saying that she had just become a grandmother. She could not dance at her son’s wedding but was planning to be out of her wheelchair and dance at her grandchild’s wedding.

Lets Dance!

If you are interested in sponsoring Chris you can go here.

 Posted by at 6:37 am  Tagged with:
Mar 062016
 

I was filling out a quick form on MS and it asked about treatments. I recognized all of them except one, Lemtrada. I thought wow I must have been living under a rock somewhere. Then a quick search and then I realized it is Campath with a new name. Apparently I was living under a rock since I missed the name change, etc., but now seems like a good time to revisit the drug.

I am glad I have the old information about the drug. It is now prescribed for relapsing-remitting types of patients who struggle on other drugs. What I find concerning is that, other than the drugs other horrible side effects, it kills oligodendrocytes which are key for myelin,and myelin repair. It makes me skeptocal of their claims, and peoples long-term outcomes. Bottom line it does not sound like an effective treatment that all but guarantees cancer, plus any number of other woes.

How do they even get this stuff approved as a treatment?

Mar 032016
 

Hi again old friend. πŸ™

I went to my scheduled follow up appointment with my neurologist to discuss how the copaxone is going. Apparently not so great. I did not expect much so here I am. I expected to get another round of steroids, that I detest, but instead he prescribed physical therapy. Eriksgirl was pleased, and I am just glad it is not steroids.

Physical therapy has begun. I did learn some things that I did not expect about myself. I did not realize that my left leg was stronger than my right. I would assume this has to do with the exacerbation because my right leg was excessively weak under some of the tests compared to the left. Some of their activities are focused on my balance which is good. My balance has never been great, but it has now gotten to a very bad place. I am interested to see how far physical therapy can get me. Hopefully significantly better.

Nov 272015
 
http://pinkunderbelly.com/2011/03/27/when-you-suspect-mrsa/

Picture of what the auto-infuser looks like. It takes an Hr. for it to complete.

First off the steroid treatment went better than any other had gone in the past. I did not have the horrible bad attitude, well no worse than normal, and my tastes were not negatively impacted. Day one of the prednisone went very well. The nurse offered to leave a permanent IV needle in, but it would be in my hand. I told her I do not mind getting stuck, my mistake. Day 2 a new nurse it took 8 sticks before she was able to get a vein that worked for her. This was not the first time tis has happened while I have taken prednisone. Apparently prednisone does awful things to your veins because normally I am a very easy stick. Unfortunately, day 2 was not yet over and because she ran out of IV needles and had to switch to her personal supply of butterfly needles I moved and the injection became occluded. I was 2/3 done with the IV and she asked if I wanted to quit for the night; I think it was pretty clear she wanted to call it a night and not battle getting another IV in me. I told her no I wanted to finish the medicine and two sticks later I was ready to go with a stern warning not to move. πŸ™‚ Day 3 went much better.

In the interim I am supposed to have blood work done to test for the JVC antibody. I tried twice and lost the lab slip. I have to assume that was for the best because getting the lab work done is a waste of money. I do not plan on taking Tysabri or Tecfidera that carry the risk of PML at this time. The Dr. did think that Tecfidera was a good option for me at our previous visit. I do not plan on signing up for the Death Therapy as a treatment.

I will not do the interferons because I think they are garbage, and they did not do much for me. That only leaves Copaxone as drug, or nothing. We look up Copaxone and learn as much as you can without a full understanding of the immune system. πŸ™ I also look up how much it will cost through my insurance. The drug is roughly $5,000 a month with a copay of $150. The $150 is doable, but I am on a high deductible plan so on January 1 I would have to eat the $5000! If that is the case it is a no go.

Off to the follow-up with the neuro. A minor exam and in his professional opinion I am walking better. I guess that is why he makes the big bucks because I had not noticed my walking had improved. πŸ™ The rest of the brief visit was discussing Copaxone. I told him the $5000 price tag, and his response is that it is a very expensive drug to make it is not all profit. He sounded like a drug shill from Teva. If that drug costs more than $5 to make I would be shocked almost to death. There is obviously good money in drugs so I need to continue my own drug research. MVT with the proper marketing certainly can help a lot of people. πŸ˜‰

To wrap this all up Teva/Copaxone called today. They wanted to discuss the initial setup with me. I said that is fine, and we got that all worked out. I then brought up their $5000 per month cost. She said that they can eat the first part for the high-deductible plan and possibly the copays from then on. I thought OK as they are gouging my insurance and I am making my insurance more expensive for everybody in 2017. πŸ™

As a postscript I was looking at Tecfidera on the NMSS site. I could not shake the BG-12 name it had before it was Tecfidera. I was certain I had written about it, and I had. BG-12/ Tecfidera was a Mold Killer! Who in their right mind is going to take a mold killer as a treatment!

Nov 182015
 

ChoceurDark85CocoaYes, we all wish! πŸ™‚ There is a study to see if chocolate can easy the effects of fatigue. Good news you do not have to wait for the results; you can try this yourself! πŸ˜‰

Before I even read the article I went to Eriksgirl that they are doing a study of chocolate as a treatment for MS. In light of that I encouraged her to run some trials of chocolate on herself to see if it improves things for her. She was fully on board. What can you not fix with chocolate! πŸ˜‰ As I walked away she was unwrapping some black chocolate with a smile on her face (I guess it worked for her).

I proceeded to read the article and the key is the flavonoids. That is great for my wife and her “love” of Moser Roth 80% Dark. I detest dark chocolate, and I am pretty certain my peanut M&Ms do not contain significant amounts of flavonoids. I suppose we will have to run our own study here and pit Eriksgirl and Moser Roth vs and me with peanut M&Ms. My hypothesis is that there will be no losers. πŸ˜‰

Oct 282015
 

Maybe not friends, but we know each other well. πŸ™

A few weeks ago I started experiencing some slight tension in my right calf. I wrote it off for a while, but it progressed to decent pain when I was walking. This was a first, and then I had no choice but to slap the label of spasticity on the issue. I tried Motrin to see if it would help with the pain when walking, but no effect. Fortunately, the tenseness not stick around much longer and is gone now.

While I was having the spasticity problem, and persisting now, is a small balance problem. I have not fallen, but I am glad for nearby support. I am especially thankful for the handrail next to the stairs. This is improving but still lingering.

Apparently, when my “old friends” came over they invited someone new. This was especially disappointing on a few levels. Who wants any of these types of “friends?” I have gone quite a while without any issues and even longer without any new issues. Very disappointing.

The new issue is a gait problem. Difficult for me to describe. I will see if I can get a video and post that for a follow-up.

May 142015
 

MiconazoleIf so I vote for Monistat 1 and not 7! Was he just bored and going through the medicine cabinet to see what works?! Lots of questions! πŸ™‚

Regardless, I was reading and I saw this article (Athlete’s foot drug in the article, but I find Monistat more plausible πŸ™‚ ) about anti-fungals and MS. I like that they encourage growth of new myelin growth, but how they came to discover Minostat encourages myelin growth I am certain is an interesting story. I guess the best part for me was the quote “He says the formulation of the drugs would need to be changed so that they could be better targeted to the nervous system where MS strikes.” I guess most people do not want to eat Monistat?

Duck faceThis makes me think of the old joke about Preparation H and the instructions: “do not take orally.” Sure, do not take orally seems like an obvious, dumb instruction, but here we are. Now this “Monistatg Cure”Β  has me wondering a lot more about the duck faces” that are posted on facebook. Facebook is certainly a place where people like to post there shame. Maybe some of those are pictures of people who took Preparation H orally?

The remyelination did make me think of the Anti-Lingo drug. I looked that up, but no new and exciting news. No surprise. I think we need to hit phase 3 trials before we get some answers.

May 072015
 

Zevia ColaSo today Eriksgirl came in and said I want you to try something. Made me nervous at first that it would be some weird food. I quickly saw a blue six pack go into the fridge and I correctly assumed that was what she was talking about, and I also correctly assumed it was not Bud Light. She said that she picked up a Coke replacement, Zevia, at Sprouts and she wanted me to try it. I had just read how Pepsi was changing the sweetener in Diet Pepsi to help stop their shrinking demand. Pepsi swore you could not tell the difference although I never liked Diet Pepsi.

We were having lunch so Eriksgirl wanted me to try on right then. I poured it over ice so it would be cold, but still did not like it. In fact I could not discern much of a cola taste. My son on the other hand said “This tastes just like a Coke.” I came back later and tried again and I think my biggest problem is getting over the taste of the sweetener, Stevia. Eriksgirl agreed that is probably the case, and it does take a while to get used to. Eriksgirl also noted that she had gotten used to Stevia a while ago so the Zevia was fine for her and she liked it. I personally deemed Zevia as failure as a coke replacement because it would require me investing time and money into acquiring a taste for Stevia. More than that Zevia is significantly more expensive than Coke.

That brings us to why did Eriksgirl pick up Zevia for me? I do drink Coke every day, and that is obviously not a fantastic choice. Eriksgirl was looking for something healthy that could replace the Coke. It even says on the can vegan, kosher, and gluten free. That said I would hope a normal Coke is vegan and gluten free. πŸ™‚ I told Eriksgirl it is not worth it and when our new diet get going I will just drop it. The Zevia as a healthy choice, for whatever reason, made me think of smoking. Then a guy dressed up as a cigarette to make you associate bad things with cigarettes. Maybe that is another idea for Eriksgirl, have someone dressed up as a Coke can beat me up so I associate bad things with Coke. (with knocked out teeth) See I told you the Coke was going to rot out your teeth. πŸ™‚

Apr 252015
 

There’s a nap for that.

Lately I have been battling fatigue well beyond what is normal, and what I can blame on the kids. I think it is just a normal sickness because Eriksgirl is suffering from it too (maybe it really is the kids πŸ™‚ Kids are always bringing stuff home so hopefully that is all this is.

All that aside Eriksgirl may just be tired from the “sleep curse” she has had as long as I have known her. I asked her if someone put a http://www.atletipercaso.net/8105/storie-yolanda-gail-devers-la-volonta-oltre-la-malattia#voodoo spell on her and she did not know. As I was thinking way back to 1993 there was an incident for her where there was a lady that came into Grandy’s and Ike, the manager, insisted loudly, I was not there, “she is a witch!” I was told she had long nails, I think longer than Gail Devers (Ike probably never liked Gail Devers either). Maybe it was the witch and she cursed both of them! πŸ˜‰