I was diagnosed with RRMS in Dec.
2017. I am now approaching the meeting with my neurologist about treatment options, etc. I have a choice of pills and injections. We are all so different so I know two people aren’t alike but I am looking to hear what people like or dislike about either or.
All of the side effects get scary, so I am trying to look past that. I am very active and lead a healthy lifestyle. If anyone has input on injections or pills, please share!
Thank you so MUCH!
I am on copaxone right now, 3x a week injection and I like it, I have no long lasting side effects except for some injection reactions. There is also some reactions that can last 15 minutes after injection like chest tightness, anxiety, and breathing difficulties, but they pass fast and i have only had that twice.
I started on rebif, I hated it and it hated me, the injections were painful and the constant flu like symptoms were awful, even with use of ibuprofen or tylenol. I had all the side effects and my liver enzymes elevated to dangerous levels.
Ask for information on all them, my Neurologist sent me home with education on 6 medications. The side effects are scary to read, a lot of which amplified to show how serious it can be, but dont happen to frequently. Depending on medication, frequent lab work is done as well when needed.
Thank you so much for sharing. I know everyone is so different, every single one of us will react in other ways. But I still enjoy to read others experiences. My neuro has given me phamplets to look over and then we are going to go over my MRIs and things at my four week follow up. This is my third neurologist and second since diagnosed only due to insurance change.
the first neuro wanted me to start avonex and didn’t mention other options but who I am seeing now has given me packets and brochures on pills and injections
i work a physically demanding job so it’s hard to decide if injections will be good for me with the flu like symptoms. Everything has a darn symptom it makes it hard to figure it out.
thank you for the well wishes. I have terrible white coat symptoms, BP is always elevated at every visit because this is all so new and I’m constantly feeling nervous. I’m hoping as time passes it because more natural .
I take Tecfidera 1 pill 2x/day....getting onto and settled into it took a couple months, was a "rugged" adjustment for my body. Been on it just about one year now and 2 MRI's later my MS appears "stabilized" with no chnges or additional damage i'm told. Was diagnosed Dec 2016 so this is my 1st DMT. Today my body tolerates it nicely....i'm lucky one could say,
Thank you for your reply! The more I read the more I lean towards a pill form. I feel blessed to be where I am as well my case being as mild as my neurologist says it is. I’m a firm believer I can do whatever is best for my body by listening to it! If one thing doesn’t work I’ll have to move to the next.
Im glad everything is working well for you! That’s fantastic.
I am looking into options right now, and I am studying Aubagio now. I think I am going to start with pill form aside from injections. I got some really good news about my case and the mildness of it so I would like to try pills before injections. Tecfidera was an option for me also, but it is also stronger with more side effects and where I am she said I dont have to be as aggresive with it where my lesions are. I know there are some slight side effects with everything but I feel more comfortable trying pills before injections. I just cant see myself doing them. UGH.
Thank you for your response!
I was diagnosed 2.5 years ago and went on Tecfidera right away. I chose a pill because I didn't like the idea of giving myself shots on a regular basis - not fun and not convenient. The first 2 weeks went fine, then week 3 was really bad, but I called my doctor and he readjusted the titration up to the full dose and the second time around went well. Now I can even take it on an empty stomach (a little flushing when I do this, but nothing major). My hair is thinner, but its a small price to pay for the results - no relapses, no new lesions, no active lesions and my bloodwork is normal. I am JCV positive, but since my bloodwork is good, my doctors are not concerned. I have bloodwork and MRIs done every 6 months. I work full time and travel and taking a pill 2x/day does not interfere with my daily activities.
All of the meds have side effects and you are right, they are scary. Read about all of them, make a pro/con list and maybe narrow it down to 3 or so to discuss with your doctor. The MS Society has good information on each one. Only you can decide which side effects you might be able to live with - and not everyone reacts the same to medication. If you choose one and don't like it or can't tolerate it, there are more options. Many people have to change meds for one reason or another. Once you choose one and start, be honest with your doctor about any symptoms or side effects you may experience.
Best of luck to you!
Thank you for your opinions and experiences! I am starting to lean more towards pill options first but it’s still in the air. My follow up appt I am going to actually see my lesions and things for the first time so I feel like that will have an effect on how aggressive we are also. I was told when I was diagnosed I had a very mild case, and I just saw my new neuro due to insurance change. So I never really got to have the sit down yet because the diagnoses was obviously a super emotional appointment.
thats what I’m conerned with I work full time three twelves, work out, typically pm the go (unless I need to rest or take a nap of course) traveler, photography, foodie.. a LOVER of life. My attitude is MS will not stop me, so I just want to hopefully find something compatible.
I am going to have to get used to bloodwork and MRIS. I work at a hospital and I’m a terrible patient. I can’t relax at all. Lol when I went to my ophthalmology appointment to check for any eye issues I was sweating so bad when they were examining my eyes I needed water. I will get more natural I hope!
thank you for the luck. I’m glad everything is working for you and positively treating everything!!