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. 🙂 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. 🙁 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. 🙁 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. 😉

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. 🙁

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!

Jan 192015
 

The Neuro thinks I need to be on a medication and it should be an Interferon. It should be fairly well established what I think of the Interferon class as a whole. In the office we got off on a slight tangent when Eriksgirl stated that they do not even know how the Interferons work. His response was because you do not know does not mean I do not know. Normally I would agree but on what level is this drug working? Furthermore, I have to come back to my older post that they just do not work.

I guess I should be fair the Neuro is equally OK with Copaxone. Unfortunately I know very little about Copaxone, and I am not really interested in finding out any more. 🙁

Aubagio

The box for Aubagio looks like birth control piils. Maybe as a warning NEVER GET PREGNANT WHILE USING!

Interestingly the Neuro is categorically against all available oral medications. His reasons was not that they are not effective it was that none of them is safe, and this is from a doctor for there is a time and place for Tysabi. He does, and has, prescribe the medication with varied results. I cannot remember all the oral drug names so forgive me. One patient he was treating the oral drug was

causing stomach issues and I think sleep issues. He did not say the drug killed her, but it did not help. Then of course the death with Gilenya, and if I recall correctly that happened on dose #2 after the supervised dose went fine. I believe the drug Aubagio was of special note because it carries a pregnancy Class X for men too. He said he would never prescribe Aubagio to a male and never to a female before menopause.

Long before this visit Eriksgirl wanted us to go on a gluten free diet. She is sure I would feel better. I agreed that if I ate better I am sure I would feel better. Eating better should help regardless of what I am suffering from, MS and or Lyme. She then purchased The Wahls Protocol which at this point I have only flipped though (and it scared me :-). Good news is the Walhs diet is clinically proven to help with MS, but do not ask me how much because I have not read that part. Eriksgirl, who looked at the book more than I have, agreed we should not start there, that was like jumping way into the deep end of the pool (can I swim?) but we should start with the paleo diet instead. I agreed and we have a friend who has had to be on a paleo diet for a while now, former vegetarian, and it fixed her problem, related to carbs I think, and in the minimum she is a good resource. The thought is the paleo is a segway to Wahls. One baby step at a time. 🙂

A couple addendum here. I will try not to post images of what I am eating. I am not on Facebook, but I hear that is a thing. I also told Eriksgirl that if we are going to get a blender for this new diet it cannot be a Vitamix because the blenders have a cult following. I do not want to be in the Vitamix cult. I think a Blendtec, etc. would be more than adequate. I know a blender sounds weird but Eriksgirl has Vitamix friends, I will not join. 😉

Jan 102015
 

I Feel much better than the Neuro says I am

I had an MRI at the last visit and Eriksgirl noted that it was different, my hands bent differently, etc. My neurologist said he could not comment without a MRI to see if therre were changes in the brain causing the change so off I went. When I asked all he could say about that is your MS is progressing. think that was his way of saying I do not have a clue and blame something I have been diagnosed with. The safe non-answer. 🙁

Now we get to the glass-half-empty Neuro vs. glass-half-full (me/Eriksgirl). He was very displeased with there being new lesions in the brain. I was pleased there was not an aneurysm from my kids! 😉 We then proceeded to discuss drugs for a while, he heavily prefers the injections. He then said than I need to get on a drug before a lesion puts me in a wheelchair. Later Eriksgirl said she was thinking he pulled a violation for jumping straight to wheelchair rather than a reasonable progressing disability. That seems fair to me and especially true based on past visits.

We also had a talk about Lyme, which he mostly dismissed. I have tested positive for Lyme so I at least had it at one time. He said he could be wrong and was willing to refer to someone else to look at other causes of my lesions. The person who he was going to refer me to was of course a specialist in MS. Pursuing that seemed a lot like going to a Ford dealership to have them discuss all the makes and models out that could best fit your needs, and then you are little surprised when the best one is a Ford. I had to decline that offer as I had in the past.

I left without picking a drug, big surprise, and I told him I would get back with him.

Jul 062013
 

Because I have been diagnosed with Multiple Sclerosis I am regularly recruited to MS studies for my opinion. If it is a drug which they do not provide a name they always call it Product X. This was another Product X study on a new drug. During the hour long one on one interview we discussed marketing phrasing for the new drug. All of phrasings were bad and they really liked to use “New technology….” has brought a better drug. I discussed there is a disconnect between technology and my health, drugs, etc. but I would lay money it is what they use. Continue reading »

Aug 262012
 

I think Canada study brings up a great question because in hindsight are interferons even a rational treatment? What are the interferons treating? Interferons are not the best understood thing in the body, but importantly they are already made in the body. Why when we are already making interferon b1a do we want to inject more? And if I recall it made out of Chinese hamster ovary cells. I was never checked to see if my interferon levels were low and needed boosting with a shot. Furthermore, in the body interferon is made as needed as an immune response to viruses, etc. Is the contention with taking the interferons that I have an infection that they will fixed. I certainly know the injections certainly never kept me from getting sick with other “infections.” Continue reading »

Jul 192012
 

I guess not based on how much I had to pay for Rebif, just worthless in efficacy in preventing long term disease progression. What I do like is that they used all records of people on the drugs and those off and compared results. Overall it was a fairly large study and can be repeated elsewhere. In the minimum it does not bode well for the Interferon users for MS.

I liked this quote: “Researchers are quick to point out that this is just one measure of these disease modifying drugs and there is still potentially significant benefit to patients.” Maybe I am missing something. I thought one of the key purposes of taking the drugs is to prevent disease progression. I certainly did not enjoy taking a shot, and would not consider it a benefit. I did not enjoy the site reactions. I did not enjoy the side effects. What else is left? I was even tested for Rebif antibodies because Rebif was not working that well at controlling lesions. Now we may know why! 😉 Now I wonder why did did these drugs ever make it to market? Will the FDA just rubber stamp anything?

I am in the wrong business. I need some seed money to start a drug company. Obviously the drug does not have to be that safe or even work to get approved. I am thinking about sweet tasting pills like M&Ms but medicinal. 😉

Jun 232010
 

After the results of the MRI I got a call from my neurologist’s office with the results, albeit a little slow. It was his medical assistant and she gave me a brief synopsis of “it is bad.” She also added that the neurologist wants me to resume Rebif (aka whatever I was taking before). He was aware that I had quit to get treated for Lyme (he did not approve). In reality I had quit before I knew about Lyme. I had grown to hate taking Rebif, and it is not like it does not have any nasty side-effects (cancer?).

I started Rebif when I was diagnosed with MS because it was the “best” drug at the time. I was very optimistic about this treatment. As time progressed and many MRI’s later the Rebif was not working real well. My first neurologist ordered a blood test from Athena Diagnostics to see if I had developed antibodies to the interferon. No antibodies. I continued to take Rebif; in hindsight I do not know why I continued taking an expensive drug that did not work well.

The test from Athena was a waste. It provided no useful information and the test was “expensive.” The test should not have been expensive the core cost was $1000 with a $200 charge if you paid cash, but they said they would bill my insurance. The claim was rejected because they did not fill it out correctly. I called them and they said they would re-file correctly; I never heard from them again. Blue Cross would have paid 100% for that test if they had done as they said they would; they lied. I got a call from a collection agency wanting the $1000 years later. I offered the $200 cash price. They eventually gave up calling. They can get the $1000 from my cold dead hands.

Damn Rebif. Damn Athena. Damn their billing. Damn Lyme.