I don’t share much about MS until I experience relapses in symptoms - this is one of those times. Bottom line up front, this post is about the following:
*My personal review of Tecfidera vs. Avonex
*United States MS patients who use Allience Rx pharmacy experiencing customer service issues.
*Energy medicine and diet - things I learned while waiting on my delayed prescription refill
I have had MS for 13 years and received the diagnosis to Avonex 8 years ago. While on Avonex, I would have relapses every year that would last 4-6 weeks. If we are being honest, I was not always timely with my self injections because of the side effects that I would experience (chills, soreness, flu-like symptoms). I was also not in a very good place in my personal life during that time either and I believe that is worth mentioning because my emotional state does impact the severity of my MS relapses. My relapses during my time on Avonex were my worst.
I made the switch to Tecfidera (now taking the generic) about 2 years ago. Immediately I experienced a better quality of life due to not having to plan around self injection side effects. I do experience flushing (red rash on skin lasting about 15 minutes) but it’s been worth it. While taking Tecfidera I have had zero MS relapses and have been able to work high stress jobs. This medication has really been a life changer. My personal life and professional life has been at an all time high and I have been managing very well during COVID.
Beginning in 2021, I had begun having problems with refilling the Tecfidera. I didn’t think much about it at first, I figured everyone has a bad day here and there; however, I multiple problems with Alliance Rx (Walgreens Prime) over the past 4 months now. There has been lack of follow through with the pharmacy reaching out to my doctor and the insurance company. I personally had to ask questions that I should not have needed to ask as a patient (for example, What blocks on the prior authorization form did my doctor’s office not complete?). I felt like I had to be a middle man between my doctor’s office, pharmacy, and insurance company. I eventually found out that I was not alone in my complaints. Multiple patients have been complaining about Alliance Rx, with the majority coming in at the beginning of 2021.
The results of the poor customer service led me into not being able to get Tecfidera refills for the months of, January, March, and April 2021. In April, I began having a relapse in MS symptoms (ongoing). I have learned that other patients who have had to stop Tecfidera also experience relapses in MS symptoms shortly after stopping - so, if you are thinking about stopping Tecfidera be mindful of that being a possibility for you. Otherwise, this has also been the mildest relapse I have ever had, only having numbness and cramps in my legs with no other symptoms. Unfortunately, I can’t switch pharmacies because Alliance Rx is the only pharmacy in my insurance network that carries my prescription.
Desperate to get ahead of things from getting worse, I did reach out to my neurologist, who had me start taking prednisone while also trying to expedite getting back on track with Tecfidera. I also spent some time reading and learning about alternative remedies that I thought was interesting and figured wouldn’t hurt to try.
*Apparently, most MS patients do not have enough red meat in their diet and it is thought that it could have potential benefits in repairing the myelin sheaths around the nerves. I know I personally do not have enough red meat in my diet simply because I just don’t prepare it. I figured it doesn’t hurt to keep some beef jerky around to snack on.
*Lions Mane pills were also a recommendation that I am considering. It’s some kind of mushroom that is said to help the central nervous system. It can be bought over the counter.
* Frankincense and peppermint oils have already been my friends with alleviation of the tingling numbness in my legs. It’s really worked for me along with Goldenrod salve to ease the muscle cramps and soreness.
*Energy medicine is another thing I am looking at but I’m a little skeptical on. I am trying to break my current mental models I have on “reiki healing” and give it a good shot. A woman I work with swears by it and has had actual healing occur, so if anything I going to read the book she recommended. The author says she healed herself of her MS using her bodies energy. I’m not looking to replace my usual medication with energy solutions; however, if it take my pharmacy two months to refill my prescription again I definitely don’t see a down side to trying this out.
*In addition to the energy solution, I came across this method online: Lay still, envision small boats inside your body float down your spine from your brain into your nerves. Your breathing pushes the boats on that stream. Envision the boats are loaded with construction equipment for repairing your nerve damage. Envision the boats stopping at where the nerve damage has occurred so that construction can begin to repair it. (I know sounds weird, but honestly I don’t think it’s a sin to do this for five minutes- worse thing that could happen is a waste of 5 minutes)
