Consecutive Use of Gilenya and Lemtrada ... - My MSAA Community

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Consecutive Use of Gilenya and Lemtrada Causes Disease Activity in MS Patient....really do you trust DMD's?

dogdaddy profile image
17 Replies

multiplesclerosisnewstoday.... I swear they are trying to make us worse!

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dogdaddy
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17 Replies
RoyceNewton profile image
RoyceNewton

of course, They are the only medicines available to change the progression of my illness, so not trusting them would be perhaps a little foolish. This is certainly not to say tale a Disease Modifying Therapy with a very high-risk profile, but I would like to walk as long as I can so a DMT os a must.

Be smart, research your options, and ask questions. These are powerful medicines with side effects. Be aware of them and make a decision about which one to take, but take one.

CalfeeChick profile image
CalfeeChickCommunityAmbassador

I'm sure it's possible that each of us responds differently to the various MS meds. I just wish I could try any MS med. Actually, My MS doc has one he would like to try, but because I am older, he will have to pull some strings and also I must get pre-approved by insurance etc. I was very active, healthy 68 yr old until I went numb 2 yrs ago. Now, I have to prove I am strong enough mentally and physically to withstand MS drugs. Very frustrating for sure.

dogdaddy profile image
dogdaddy in reply to CalfeeChick

are you still able to walk and function pretty well ?

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to dogdaddy

Yes, I can drive, outside of the house I use a cane. By late afternoon, my focus, balance are both pretty wonky. That's when it's cool enough for me to putter in my garden, but I must be very careful to not lose my balance. I take "Symptomatic" meds for my numbness/tingling, spasms in legs, feet, toes.. One of my doctors has recommended some CBD creams and sprays. I've just received my order and will be trying some and will be trying in just a few minutes to relieve(I hope) spasms in my feet and toes..

dogdaddy profile image
dogdaddy in reply to CalfeeChick

You are probably better off without the DMT's. Eat all organic and take supplements. They are a hell of a lot safer than DMT's which have tons of side effects and ruin your organs with long term use.

I use CBD oil it helps with leg spasms.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to dogdaddy

The cream did help with the spasms earlier. I suppose I am just tired of taking all the symptomatic drugs every few hours of every day. This has been a rough spring and summer for me personally, and I'm just mentally, physically tired. You're probably right about the DMT"s, just tired and want to feel better. Thank you!😊BTW, I do take what seems like a bundle of vitamin supplements every morning & evening, then a couple of extras at noon just to help with absorption.

dogdaddy profile image
dogdaddy in reply to CalfeeChick

I buy my CBD oil here diamondcbd.com/products/dai...

and this is my favorite product for leg spasms

Sign up for their newsletter and you'll get notice of 50% off sales

Today's 50% OFF Sale is on their pet products which I buy for my 16 yr old hound dog :)

Iona60 profile image
Iona60

This is very interesting. I had a six week washout between gilenya and ocrevus. It was only because my lymphocytes were low, or I could have switched right away. Makes me think that no one is studying the interactions between the DMTs and what the washout should be. What good will it do to ask questions, if no one has studied the answers? That's for this post.

dogdaddy profile image
dogdaddy in reply to Iona60

I knew this would apply to someone in our group. Sorry it's you.

Jazzyinco profile image
Jazzyinco

Oh yes they are trying ti make us worse dogdaddy! Oy! Sweet woman infowarrior too! Me too, we both are MSer warriorz & Infowarriorz too!😄 Awesome, i tried their Brainforce, wasn't bad, this is only beginning of the Social-Media take-down War of all alternative media!!!😡😠 Much Love,💗❤💚💙💛, Prayers,🙏& Blessings---Jazz🌹💜

dogdaddy profile image
dogdaddy in reply to Jazzyinco

I use brain force every morning. It is the only thing that helped me move my bad foot after the last relapse hit me :) I KNEW i LIKED YOU! fellow infowarrrior....man they're really trying to take him down along with Trump and all of us!

Fancy1959 profile image
Fancy1959

Dogdaddy, it's Fancy1959. Your post has had negative repercussions in the chat room in that we're getting messages from people that are now scared to stay on their DMT. This study that you quote was based on the results of the switch of therapies of one woman. That is not a scientific study and that is not worthy to be posted. Studies need to have actual clinical trials involving sometimes thousands of people not one. Posting a study based on one woman's experience is nothing less than a scare tactic that will negatively influence the entire chat room.

Our DMTs are our best defense to fight this monster that we live with. Without the DMTs we would allow our MS to run amok in our central nervous system. Often times the damage is silent and we don't discover how bad it is until it is too late. By posting this article, you are raising doubts about the worthiness of stay ing on DMT's. Getting off all DMTs is absolutely unfounded by scientific research. We always tell people in this chat room we are not doctors. Members in this chat room that what more information on this topic need to go to their Healthcare team for information that is accurate. Fancy.

dogdaddy profile image
dogdaddy in reply to Fancy1959

I just posted something that landed in my inbox from multiplesclerosisnewstoday.com with my comments appended not my problem how people analyze that data as each patient has to decide for themselves if big pharma is truly using us as guinea pigs or if they are truly trying to find a cure! As Ilona60 pointed out (someone who is being affected by this information) "Makes me think that no one is studying the interactions between the DMTs and what the washout should be. What good will it do to ask questions, if no one has studied the answers?" and she has a valid point!

Fancy1959 profile image
Fancy1959

Dogdaddy, it's Fancy1959. Clinical trials after clinical trials involving thousands of people have all shown that taking DMTs decrease the disability that MS patients are struck down with. Doing nothing will lead to vastly increased level of disability. It is a proven fact backed up by vast scientific research. Fancy.

Jazzyinco profile image
Jazzyinco

Denise, i can't do fake-book, my phone won't allow it!! It's only. 8gb & kept crashing sorry! I'll be Praying for ya!❤💚💙💛Love to ya!🎁---Jazzy

dogdaddy profile image
dogdaddy in reply to Jazzyinco

twitter? or gab.ai? I'm on both under codadogrescue

Jazzyinco profile image
Jazzyinco in reply to dogdaddy

Sowwy, i cancan't do any of them! Stupid smart phone crashes them!😨 Sad but true! Well, u can always txt me if ya want!! Blessings, &Much Love to ya!💚❤💙💛🎁👍--Jazz

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