Understanding MS therapies and the importance of staying on it. Treating your MS is of course a very individual and personal decision that should never be judged but education is key as there are many misconceptions. Course Therapy Info
Such as this common one…”I still feel terrible and I’ve had some new/active lesions, it’s not working so I might as well just stop taking it.” In reality, your MRI could’ve been 10x worse had you not been on a dmd.
1) Must allow at least 6mo-1yr to recognize the effectiveness of your dmd.
2) It’s common to develop a false expectation, believe that in order for the medication to be working we must “see/feel” results. In fact, the opposite is true. They work in the background but often times symptoms become permanent from the damage so other medications may be needed to treat the symptoms themselves. However it is possible to actually “feel better” while on therapy, it’s not a guarantee as everyone reacts differently to treatment.
3) It is important to realize that not seeing an “increase” in relapses means your DMD is most likely effectively treating your MS. Educate yourself on DMD options before making any decisions.
4) Knowing the difference between true relapse vs symptom flares or pseudo flares.
• With a true relapse there is lesion/disease activity (detected via MRI. With a symptom flare there is typically no lesion activity, disease progression. More info here
5) Having a relapse while on therapy does not automatically mean that your therapy has “failed” you. DMD’s are meant to slow disease progression, reducing relapses means lessening not stopping altogether, that would be closer to a cure which we do not have just yet.
6) Your physician will need to do an assessment to determine patterns, lesion activity, history of relapses as a whole all of that information is taken into consideration when determining if a patient should in fact begin Solumedrol iv steroid treatment or Acthar Gel (self injection steroid therapy) and in fact a possible dmd change. *Don’t get discouraged and/or make any decisions without first consulting with your Neurologist.
7) When deciding which DMD is the best (for you), your Neurologist will use your medical and medication history as well as your most recent MRI results and labs. With their assessment they will typically recommend a few options to consider from out of the current 15 approved therapies.
8) It’s your call at that point which one you decide to put into your body. They will give you literature to go over, also be sure to do as much research as possible on your own. While it’s also great to hear about others personal experiences and/or opinions, be sure to keep in mind that no two patients are alike so don’t put too much weight on them. We have try them for ourselves and we must go in with an open and positive mind, sometimes it can make it that much harder when you hear how negative it was for 30 people and positive it was for 30 others.
9) There is absolutely pain associated with MS. Muscle pain, nerve pain etc MS PAIN don’t let any physician make you feel crazy.
Ice, Heat, Massage, Topical lotions, pain meds, anti inflammatories, muscle relaxers & MMJ is very helpful.
Supplements are great but it’s important to understand they can have interactions with other drugs and conditions as well. Always consult with your physician before starting or adding to your daily regimen. They may need to draw labs to check levels prior to starting vitamins such as Vit D3, B12, iron etc to ensure the proper amount is taken as there is a such thing as too high which can be toxic.
High Potency Biotin Protocol for MS *speak with physician prior. A study was done and has shown that High dose Biotin (300 mg daily) can be effective in helping to not only slow disease progression but also repair/reverse some of the damage. It has shown efficacy in patients with progressive MS, acting by increasing a route of cellular energy production, protecting against the breakdown of nerve cell axons while also activating enzymes that are setting the pace on myelin repair. *as with anything, results will vary.
Recommendation: High potency Biotin 300mg, Alpha Lipoic Acid 300mg & Bio Flora Probiotic. I have found this 3 pack kit to be the most efficient and affordable. The combination has proven to be good for MS damage, symptoms, repair, pain, healthy gut and more.
If you only want to try High dose Biotin this is sold single, high dose 100k mcg=100mg x3 300mg
*dosage is also personal preference, 300 mg is only the recommended daily dose for the high dose protocol. Be sure to check the mcg on the bottle prior to purchasing, 100mg capsules are 100,000, if you get less you just have to take more pills.
-> -> I’m tired...reatable post
*Disclosure: I am not a medical professional, my knowledge is from being a patient. Any information is from my own personal experience and/or collected from legitimate sources. I do not earn any money by posting the links within this article, it’s for ease of the reader to do further research as needed.
I started Ocrevus!
1st 1/2 dose infusion today, yay! Last 2 nights I pre medicated w/Zyrtec and will do so for the next 3 nights, hydrated with tons of water.💦 Day of-drank more water, arrived at clinic and first Solumedrol is given (partial dose IV), Benadryl (injection) & (2) Tylenols (oral), Saline is run for a bit to clear the line then Ocrevus starts. Slow drip at first, BP & temp are monitored every 1/2 hr. 2hrs in drip speed bumped up. ~3.5 hrs in, still doing great, Ocrevus done infusing!🙌🏻 Bag of saline runs during 1hr monitor phase. 4.5 hrs total-done! Home resting now but feeling well, no negative reactions. *2nd 1/2 dose June 28th. At this time this is my final option, all my eggs in Ocrevus basket.😉 Will update my progress for those interested. Good luck to all! Warrior On!♡
*Update: Day after, I don’t want to jinx myself lol but need to share…I feel amazeee balls today!♡
Read: I am Tired
I have been on quite the journey in treating my MS, over time I have tried and failed many forms of treatment. Although I suffer from a more aggressive form of MS and my options of treatment have only become much more limited over time but I haven’t given up hope that I will find one that works. I have been on Copaxone, Rebif & Avonex when I first started out about 12 yrs ago. Upon becoming paralyzed my drs admitted me and tried Plasmapheresis (blood exchange) it was successful! I was carried in but walked out in the end. When it hit me again not even a year later I was brought back in where they surgically placed a permanent line called a Tunneled Vascular Catheter in my jugular vein, we would be performing Plasmapheresis more often as needed. Shortly after placing my line and beginning this very aggressive and more intensive procedure it was decided that I would begin doing it monthly as a maintenance. I was termed “chronically symptomatic” and they felt it was the best approach. Although my lines didn’t always hold up and I required multiple surgeries to replace them it was in fact my best decision for my disease, the only thing that slowed it down. I remained on that therapy for over 7 yrs until I was no longer benefiting from it. Talk of replacing my line and becoming even more aggressive with it was happening but o wanted to move on, give my body a break. I had it removed and finally decided to give Tysabri a chance. I had to stop allowing my fear of what ifs control my decisions. About a year ago I went down the Tysabri path, it was not effective enough for me. Where do we go from here? My team of Drs were stumped but luckily a new drug intended for PPMS (Primary Progressive Multiple Sclerosis) *types of MS was released to the general population after 6+ years in trial. Now my first thought was NOPE, No ty! I don’t take newly released meds for at least a year if not longer. I was left with this, I don’t have the luxury to wait. I of course can do what I want but it was not advisable for me to wait it out. So I’m going down the Ocrevus path. I signed up and was approved instantly, I did a 6wk washout and will be getting my first half dose June 14th. The first 2 doses are half doses 2 wks apart to get my body used to the drug. After that one infusion every 6 mos. in between my Drs decided I will continue Acthar Gel Injections to help manage my symptoms, I have yet to experience stability of my MS on a DMD but an hopeful it can and will happen it may also be the answer for my Lupus as well. I am nervous but mostly so excited to continue adding to my journey, I will continue living life to the fullest and as positive as possible. ♡
With the support my family, I can do anything and because of them & their love, I will do everything.