Hi, I am new here..Recently diag. a few weeks ago; optic neuritis dec 18; which led to MRI (8 lesions); spinal tap (suggestive MS); only other symptom (other than loss sight left eye, slowly coming back) is occasional "electrical" shots down back and legs when bending neck down..I have a neurologist from H***, very unfriendly, doesnt talk or explain anything..just said my tests "suggested MS, take avonex..or there are pills you can take. Bye." I did a bit of research on avonex shots, seemed to be alot of yucky side affects.. was wondering about Gilenya, has anyone had side affects with it? Would like opinions, instead of just reading the pros and cons found on the internet about the drug. I am 53, widow, mother of a 14 yr old daughter; very active, young at heart..and I though healthy... Any info appreciated! Thanks!!!!
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I’m sorry that you’re having to go through this process … but thankful that you have a forum such as this to learn and vent. And I’m thankful that you have a choice of many different treatments to attack this disease.
Yes, people do have side effects with Gilenya. And in my case, they were far yuckier than those of Avonex, which I went back to after 19 days. But success stories outnumber failures such as mine.
I think the same could be said of Avonex or any of the injectible DMDs. Although I had nasty side effects in the first few shots eight years ago and then again after restarting (after trying Gilenya), they are usually unnoticeable if I follow a regiment of hydration and acetaminophen (ibuprofin, naproxen, etc. are also good).
Just realize that there is no free ride, and you can always change if you’ve given a drug a chance and it’s clearly ineffective or intolerable. Just like you can change neurologists, which you might want to do. -
Sorry that you are here - but you are in good hands. This place has been my lifeline so many times.
Gilenya is a pretty new oral medications for MS - only on the market for 1 and 1/2 years, but in trials for over 5 years.
The injectable meds have been around much longer and some feel are much safer.
I personally tried two injectables (Betaseron and Copaxone) with awful site reactions and other side effects and decided to give Gilenya a try. I'm only on my 3rd dose today. There is also Rebif and Avonex injectables that I did not try.
However, other people have had little problems with injectables, or they have found an injectable with minimal side effects.
Another consideration that you may have is your insurance and what it will cover. You might want to check out coverage before trying to make a decision on a DMD.
If you have not already done so - get a second opinion ! You may find a doctor you like better and get better information.
Good luck !Comment
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smm1969
Hello.
I'll cut to the chase.
1. Get a new neuro whom you feel comfortable with. Research online. I personally settled for an average doc. for over 12 yrs. Nice man, but very nonchalant & not updated on new meds, etc. Now I drive 3 hrs. to see an MS specialist who runs an MS clinic.
2. I would try Gilenya first. I first tried Avonex when I was diagnosed in 96. Horrible flu symptoms for 2 days. Long needle. Ruined every weekend. Everyone reacts differently, but then I the took Copaxone for over 9 yrs. every day. very little side effects, but it has ruined my skin. I'm so happy to be trying a pill.
If I had the chance to try pills back when I was first diagnosed, It would have made the first 2 years easier. (the first 2 yrs. were extremely depressing. )
If you find you can't tolerate gilenya, you could try Copaxone. It is a safe med. Its not as painful as Avonex, as the needle is small. After so much time, I just ran out of skin!
Take careComment
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Hi TrixieRose, I'm siitng in the same place as you... optic neuritis almost 2 years ago with coupld of brain lesions. My eye recovered 100%. No issues till a few weeks ago... had numbness in my leg that lasted a week. They did a follow-up MR and found a new lesion. So i got my official diagnosis this week....
I'm also ery confused about treatments and you will find the more you read, the more confused you get.
I would find another neuro. I actually like mine... he is very warm and friendly... but I'm getting a 2nd opinion in terms of treatments so I have peace of mind. My neuro is suggesting Gilenya but I'm afraid of the heart issues etc. But as many will tell you, there are good/bad with them all and you won't know till you try and see what suits you!
It's an unfair place to be but it could be worse... could be cancer or something terminal so I'm trying to be positive. I'm 34yrs old with 2 kids under 4.... and I live very far away from family so I'm battling this sort of on my own! But we will get through itComment
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Thank You for the Info
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Rebif
Trixie,
I've been on rebif for 7 years and can't wait to try gylenia. My legs are so scared and occasionally get sores that are painful. If a pill had been available 7 years ago I would have leap at it. While rebif has been affective the side effects have not been fun. Flu like symptoms after every dose unless you take ibprophin or Tylenol. Gylenia side effects can't be any worse and my dr says that it is more effective than rebid.
My first neur dr was horrible. Slid a book across the table when I asked him what to expect. He said it was all in the book. Have a great one now thank goodness.
Will be taking my first dose of gylenia on Monday and am hopeful for a good outcome. Wish me good luck.
Cheers MDComment
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Good luck ! I'm just over two weeks into Gilenya and so far everything has been fine except a brief episode of heart palpitations. All tests came back fine.
I had bad side effects from Betaseron and Copaxone so decided to try for Gilenya. So far, so good !
I hope that it will work well for you.Comment
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I agree with some of the other posters that probably one of the most important things you should do is find an MS specialist or neurologist that's both good and that you like. If you don't have someone who knows their stuff and will take the time to take care of you, it's really not going to work over the long haul.
I like you had very minimal symptoms when I was diagnosed (recovering from ON and a prior vertigo episode). I chose Gilenya over Copaxone and Avonex because the daily side effects looked like they wouldn't be as bad and because of the increased efficacy. 15 months later I'm still very happy with my choice. I've never had any overly serious side effects and the side effects I've had (increased liver enzymes and decreased lymphocyte counts occasionally) have been well managed by my neuros. Perhaps most importantly, I've only had one relapse (studying for the bar exam) and my MRIs have improved.
The drug has worked well for me and I'd highly recommend it. But my strongest advice is to look at the side effect profiles and ask yourself what you can live with. I found it helpful to look at the incidence of some of these side effects during testing and ask if I'd be okay with it if I was in that 8% or .4% and the treatment I'd need or the possible consequences. Listen to the neuro, but go with your gut.Comment
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I have been on Gilenya since December, 2011. Before that I took Rebif injections for several years. I had bad headaches all the time on the Rebif, and lost my singing voice. The doctor said that had nothing to do with Rebif...but amazingly here we are 3 months after quitting it and I am starting to sing again. I had a lot of injection site reactions and bruising, which were very annoying. Not to mention the fact that I hated the shots. The only issue I have with the Gilenya is my white blood cell count. Maybe its just a phase of the treatment I'm going through, but I am catching everything! That's getting old, but I am hoping that things will look up. I don't want to give up on Gilenya because I really do feel a lot better (except when I don't......). Hope that helped. I would definitely recommend trying Gilenya first before the injections (although you really do get used to giving the injections and it isn't such a big deal).Comment
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