Just getting used to my MS diagnosis,found out in Jan.Numbness & tingling in feet.Work as postman.Symtoms have improved after steroid infusions 2 months ago.Also seeing natural health practitioner for Scaner treatment & healthy smoothie.Now have to decide between 3 treatments going forward with my Neurologist.Gilenya tabs,Avonex injection,Tecfidera tabs.Any feedback gratefully received.
New member: Just getting used to my MS... - My MSAA Community
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I was on Avonex years ago as it did not work for me. Tecifidera made me really sick a year and half ago, to many side effects 😐. Been on Aubagio for year and half with great results (oral) with no side effects 😊. Prior to the last two I was on Tysabri and was great 👍only side effect was fatigue for a day. The reason I am not on it as I got throat cancer that caused low white t-cells and had to change 😐. Have been on seven DMT’s and have changed thru the years as they got better and more aggressive 👍 Have had MS since 1996. Hope this helps and you are seeing a MS neurologist specialist 🤷🏼♂️. Also welcome to the crazy 😜 MS community where there is lots of information from patients and great place to vent 👍🙏🐩🐾 Ken
Everyone is different and the MS drugs affects everyone different. What I do know is Avonex is a self Injectable drug adminished inter-muscular which you might have flu like symptoms, fever, injection site reaction muscle aches, tiredness, and chills. Gilenya is an oral medication that have its own set of symptoms (ie, low white blood count and liver issues). Tecfidera can cause decrease in white blood, liver problems and PML. Anything you take orally have to go through the liver to be used. I had to stop Avonex because it wasn’t working for me. I tried Gilenya but it affected my liver and caused my white blood to be dangerously low. Everyone is different and what affected me might not affect someone else. Just letting you know what affected me and only you and your doctor know what will work for you. Good luck on whatever you decide.
I've been on Tecfidera for about four years. No new lesions and very few side effects. The worst for me is occasional flushing/itching that goes away after 10 minutes or so. Everyone is different, though, and sometimes you have to try more than one to get the one that is right for you. Best wishes!
I can’t offer any ideas or information, but I do welcome you and send my best wishes for great success with whatever you choose. I hope you keep us up to date with your choice and results.
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Hi and welcome Curran1970 Really sorry about your dx though.
MSAA has put together a great section on helping people S.E.A.R.C.H. for the right treatment that's best for you!
mymsaa.org/publications/sea...
I take copaxone, so can't help you on the other tho.
How are you handling everything? ☺
J🌠
Welcome to our crazy world called MS. You found a great chat room full of great compassionate people. Being we’re all here for the same reason means we know what you’re going thru cause we live it every day.
I was dx April 2017 and have been on Plegridy since June and had no new lesions since August.
Whatever you need to know just ask away and most likely somebody here will know something about what you need.
God bless
Donnie
Hi. Sorry about your diagnosis. I only know about Rituxan Infusion. I get it every six months. I wish you the best to find what's best for you.
I can’t help you with the DMT info, Curran1970 , but welcome! Happy to hear you are feeling better 💕
Hi and welcome! U found a great place for support and info.
I am not on any DMT at the moment. I did take Tecfidera for a while and it was ok. Aubagio was good no side effects except for hair loss which is what made me stop. It was just pure vanity. Next for me is Ocverus
Hope this helps! Its gonna be a roller coaster for awhile and the people on here are awesome at helping navigate all that comes ur way.
Hi Thought I was the only letter carrier with ms ever. best wishes, been doing the job for ten years since diagnosis. Post Office not very helpful but with note from neurolgists at least stopped bothering about "funny shoes"
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Well done for having the heart to keep at your postman’s job,I deliver to country area in a van.Previously used bicycle for 11 years.Enjoy job,keeps me fairly fit.Tired by weekend but glad to be able to do job.Best of luck going forward😀🍀
Thanks you too! gets tough some times but believe it helps keep me as relatively fit as i am
hey Curran1970 i will tag you since we share the same job and we're both newbees
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No problem bike guy,looking forward to see how your getting on.Happy Easter to all on the forum😀🍀
Hi Curran1970 nice to meet u I've just started Tysabri I have the infusion every 4 weeks xxxz
Hi Curran
I wanted to ask you a question as am also in Ireland and symptoms also started with feet this April.Am only going through diagnosis wondering what is the route to go to get treatment etc. I paid privately to see a Neurologist who is very certain it is Ms as am I.Just waiting on MRI a private company will do them in 11days time but want €800 up front I am afraid my symptoms have worsened a bit in the last week with pain in hands and weak right hand.I am frightened to pay the company the money if I get worse in the meantime and end up in A&E. What route did you go to get treated and What s the best?
Much thanks would really appreciate the advice😊
Sorry Maura37,was off this site for about 10 days,changed phone.Only saw your post now.Went to my GP who wrote a letter and sent me straight to A&E in the Mercy Hospital Cork.Great care & very thorough with checks.If you get letter from GP your scans should be covered.I had health insurance.It's a very uncertain time for you at the moment,with a thousand thoughts going through your head.Things will improve & if you can get yourself to think positive it helps big time.You will have loads of ups and downs but this is natural.Hope you get a good neurologist to answer all your questions.
I did avonex for a year. Worked great for me and I had very few problems with side effects. Only stopped for a pregnancy. After I switched to Rebif. Essentially the same as avonex but given subcutaneously instead of inter muscular and three times a week instead of once. Same thing—has worked great, few side effects. I’ve now been on it 13 years.
If you choose a injection method, be sure to drink tons of water before. I choose nights as injection times so I can sleep through any side effects. And if you can, take a Tylenol (or something similar) right before each shot.
Good luck in your decision making.