This picture was taken at an Ocrevus dinner. Got to visit with Fancy1959, because she was there, also. After a roller coaster ride with MS meds, and having an allergic reaction to each of them, my neurologist said because of my "comorbidities" (all my other health issues, and very low suppressed immune system, and 71 this month, ) there was no medicine I could take. At first I was angry; now I am happy, feeling free from the prison of DMT reactions and further destroying my immune system. I am happy for everyone who has positive success from a DMT, but God has other plans for me! The Swank diet, 30 minutes daily of meditation, exposure to sun whenever possible, and discipline for stretching exercises every day, lots of natural supplements, herbs, and essential oils will be my weapons to continuing the MS fight! There is so much encouragement to find in this forum, and I want to help everyone here with whatever, whenever, and prayer for each of you.
Feeling free: This picture was taken at an... - My MSAA Community
Feeling free
I’m happy for you to be free if the worries associated with meds. Good for you!
Wonderful picture! Looks like a great time. So very nice that you got to spend some time with Fancy1959 That in itself must of been fun. For me it's not often that I meet anyone to talk with about MS. I had the pleasure of meeting @Tutu last spring when she came through our area, That was a real treat. There must be some feeling of relief to say "I'm done with all the meds." I know I sure wonder how much damage all these meds are doing to me. I will be 70 next spring and wonder what life holds in my future. We all just want to make it as comfortable as possible for whatever time we have. Blessings, Lynn
agapepilgrim wow, well done, praise God for giving you the insight and the courage. You certainly look a lot happier than you have sounded in a while. I pray it continues. Thank you also for your humour and prayer support. Blessings Jimeka 🦋 🌈 🤗 💐 🍫 🙏
I'm so happy that you are happy now, that's great! I like your weapons 😘
agapepilgrim you look so happy! I love that picture! I'm sure you and Fancy1959 both needed the time together!😄
Each person's choice on DMT's or not is always such a personal one. Thank you for sharing yours. (Although you know I'm gonna tell you to look for a new Neuro!)💕
I know you have a lot of problems with the meds. I hope being off then for a bit helps. But please be careful! We love you!😊
J 🌠
Jesmcd2 i have already found one - the speaker at the dinner Wednesday night!
You DID? YEAH!!!!! OMG IM SO HAPPY!!! agapepilgrim now I hope he will listen to you and you get the help you so deserve!
💕💕
J 🌠
Just by chance, have you tried Rituxan therapy? It is not an MS drug per sec. But it is well known [or not] as an off label use for MS. I we through all the DMTs with no results. Finally my neuro referred me to a "new" company neuro who specializes in autoimmune disorder and she put me on the Rituxan. I has made wonders in my life, totally turned me around. I applaud your choice to stay off the other meds but I recommend you look into the Rituxan first. I too take lots of supplements as well and was just prescribed the "HTC" pill. Best of love and hope to you and many blessings.
PS, the cost of Rituxan is much, much cheaper than the DMTs. My cost is $12 every six months as apposed to $1200+/ month on DMTs
Ms-Indestructible what is that?
Rituxan is a very mild chemo-therapy drug, you have to go in for an infusion once a year or in my case every six months. It is prescribed for very bad cases of RA where other drugs don't work. Please do a search for it in google.
I was cautious about a "chemo" drug. I'll tell you there are no side affects [for me]. and I spend approx 5 hours once every six months.
The last DMT I was taking was Avonex. I lost 2-3 days a week to recovery and after two years my liver was having problems. I really cannot tell you how happy I am to be on the Rituxan therapy. I am sure there are others in this group who are or have been on Rituxan.
Like you I try to be careful with what I put in my body. Not sure what it might be doing to me, but the results in my quality of life and no side affects are wonderful. Also I had taken all of the DMTs for MS and had no affect on the MS but had many side affects.
I am in the same boat as you. Tysabri and Rituxan both put me in the hospital and I had a 104 degree temperature with Copaxone. The truth is once you turn 60 all the DMT are only 50% effective. The best thing you can do when you get older is exactly what you are doing. I'm doing it too but need to work on the diet. I'm hoping they will come out with a chocolate diet. Make sure you do some cardio exercises too.
mike5386 oh I haven’t given up on chocolate! I just do 75-80% cocoa dark chocalate! When I am tempted to eat something not on regimen I just ask myself does this taste better than losing myelin and decreasing cognitive ability. At my last visit he wrote down I have early Alzheimer’s. That motivated me!! By God’s Grace I will only eat His foods! God be with you and peace and grace
Agapepilgrim I love that picture!!!Like we've heard..sure don't look sick....now I see the reason people say it, cause you do look really nice!I love the smile!Is that a particular statue of a horse?With meds and illness, and a word I couldn't even pronounce(cormorbidities?) maybe blessings in disguise for no new meds at this time.Dont you love being told no help for you !!Oh ya heard that one.....until something new pops up possibly.Hope comes in many forms and natural sure is a great start.It is so wonderful to be in a group that we all are here for the whatever whenever and prayers....you are such a wonderful woman....hope the docs told you that.
I love the idea of a chocolate diet.
I've had 3 infusions of Rituxan and had no side effects. I may have seen some subtle improvements, but nothing really big. My doctor said that after 25 years of accumulated disability, there wouldn't be, but one always hopes.
Rituxan (rituximab) is a monoclonal antibody approved for the treatment of non-Hodgkin’s lymphoma, chronic lymphocytic leukemia, and rheumatoid arthritis — It is used off-label to treat MS. It is similar to Ocrevus in that it targets B-cells that have CD20 molecules on their surface. Both are made by Genentech. Rituxan has been used for years in the US and more overseas.
Several people have commented that Rituxan is cheaper than Ocrevus. Since I have only had Rituxan I can't make that claim, but the hospital billed my insurance company about $32,000 for each of the 3 Rituxan infusions that I have received. Most of the costs were related to the hospital charges for the infusion and not to the drug itself. So if the Ocrevus is more expensive, the hospital bill will be exorbitant.
agapepilgrim ... you look great in that photo! I'm glad you are at peace with your decision to stop DMT's in favor of a more holistic approach. Since the drug trials seem to use 55 years as the upper age limit, the DMT's aren't tested in us older MS'ers anyways. And neuro's don't seem to be in agreement about efficacy in older patients either. My neuro insists that everyone with diagnosed MS should be on a DMT. But I know of other neuro's that disagree.
@agapepilgrim It is wonderful seeing you looking and sounding so good!
Hi agapepilgrim. Are you still doing well? I am recently diagnosed and hoping to avoid the major meds and go natural. I know an amazing herbalist who can do wonders for many things. Anyway, clean eating is a given, as well as great supplements. I just wondered what essential oils you used?
Glad to hear it!!
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