New to MS

[Ragen]

Hi

I was diagnosed with MS last week, after 1 know attack. I have between 3 and 5 legones so it's early days of the disease.

Now I have to decide on medication: Avonex, Rebif or Betaferon.

Avonex is more appealing as it's only once a week but Rebif seems to have better results.

Also I'm unsure if I should start right away for 2 reasons.

First we are going on the holiday of a life time in 5 weeks and I hat the idea of suffering from side effects while we're away

Second we are trying for a baby and what if the medication effects the fetus??

I'm so confused, I need some guidance. Will waiting 8 weeks before starting make much difference? Are the side effects really that bad? Which is the best medication??

[sofia]

sorry to hear about your diagnosis. i was devostated when i got told the bad news.

i got diagnosed in 2002, and i chose avonex weekly injections. i was told that rebif and avonex had the same effect, but rebiff was relativley new back then.
i stopped after 18 months as the sideeffects increased, they lasted nearly 48 hours. i was quite healthy, and didnt have much bother.
i tryed copaxone after i quit avonex, but only stayed on it for a couple of months, as i was covered in sore bumps from the injections.
in 2008 my disease got more active agian, and i was told by the ms nurse that with the subcuntanious injections, symtoms are less intense. but before i got started with rebif, i had two more attacs, and was reconmended tysabri.
i was reluctant to start it, with the risk of pml and dying, but as the risk of being completely disabeled was more certain i gae it a go. unfortunateley i do not tolerate that drug either, and have just come of it this week.

i do not think that if you wait 8 weeks before starting the meds will make more difference, even if studies show that early medication is more effective in the long run. i had to aply to get my meds back then and the whole process took a few weeks, i was cross with everybody for taking to long, as i had read the study about early medical intervention, and was convinced i would suffer cause of it taking so long.

not thinking that ms infact is a life long condition, and it does not go away even if you start the medications. i think i would have waited, but that might not be the best medical advice, talk to your neurologist about it. maybe get a second opinion. for me the side effects were bad, but not the worst when i first started, even if it is the oposite in most patients.
the side effects are not diabeling, you feel a bit rough after the shot, that is why you take it just before bedtime. maybe you are not in tip top shape the next day, but it is not to bad, well it wasn't for me in the begining. other patients i now, have not complained to much either.

good luck with your holiday, and good luck with your meds

[LR1234]

If you are thinking of getting pregnant I would opt for LDN for the moment. It is even prescribed for some people for fertility issues. The DMD's are not supposed to be taken if you are planning to get pregnant. If I had to pick one of the DMD's I would go for copaxone but LDN would def be my first choice for you x

[Ragen]

If you are thinking of getting pregnant I would opt for LDN for the moment. It is even prescribed for some people for fertility issues. The DMD's are not supposed to be taken if you are planning to get pregnant. If I had to pick one of the DMD's I would go for copaxone but LDN would def be my first choice for you x

I have to be honest, all that meant nothing to me!

LDN...DMD...what? I live in Sweden and have only been give 3 choices: Avonex, Rebif or Betaferon. I told them we were trying to get pregnant but that didn't seem to make a difference. But maybe I can ask for it, If I knew what LDN was!!

[Algis]

LDN stands for "Low Dose Naltrexone" ( see: http://www.thisisms.com/forum-10.html ) while DMD stands for "Disease Modifying Drug" and is all threads spread in main board ( http://www.thisisms.com/forums.html )

Hope this help

Good luck!

[Wonderfulworld]

Hi Ragen
If I were you I'd try for a baby now if you want to do that and go on one of the meds after you've had your baby. It is not good to be on the meds while trying to conceive. I was on Copaxone when I conceived twice and I lost the pregnancy. I did have a son but only after I gave up Copaxone before trying. I went back on Copaxone a few weeks after I'd had my son.

I think you can also get Copaxone too? It is a daily injection but I've found it quite good. I had to quit Rebif a few years ago because it was destroying my white blood count. Copaxone has caused unsightly lumps and bumps on my legs (it's called lipoatrophy) but I had to weigh up the risks for increasing disability vs. my legs.

Good luck trying for the baby.

[msgator]

definitely don't take any of the interferons (avonex, betaseron, rebif) if you are trying to get pregnant. I had to be off avonex for three months before trying to have a baby. Pregnancy is actually usually really good for MS. I didn't have any post pregnancy problems either, I think it was because I nursed. Good luck.

[Alexandra]

Hi Regan,

I have been diagnosed with MS about 2 months ago and since then I have been asking myself the same question. What to start with. After a lot of research and help from NHE, jimmylegs and smoky, on this forum and meetings with the drugs producers, I chose Axonex and I am starting today. If you go through the forum, you will find my question and people's answers. It looks like Avonex should be the easiest one to handle.
About waiting, when my MS started I had 2 small lessions. This was last year in July. Almost one year later, I have 4 lessions and the treatment hasn't been started until I was really confirmed to have MS. So waiting a few weeks, will not make any difference.

Wish you health

[Ragen]

Thanks everyone for your replys.

We have decided to wait atleast until we come back from holiday, and then maybe I will decide to wait again until we have a baby. The problem with that is we have already been trying for a year and nothing, so I can't assume it will just happen straight away.

Technically, come July (1 year of Trying) we should start to get medical assistance, so hopefully it will happen this year. With that in mind I might decide to wait a little longer, but it will be hard to convince my partner of that. He want me on it NOW!!

I will also ask about LDN, thanks Algis for the definition.

I think I need to start reading through some of the other threads, and get to grips with this new aspect of my life.

[globab]

first thing.... dont get discouraged with ttc.... i know that is hard to do... as we tried for 9 years..... finally had a son 9 years ago....

I would totally wait on any meds while ttc.....

i was on rebif...... for a couple years. and had major side effects.... flu like symptoms all the time.. and very painful while getting my injections...... so i stopped, and now i am on copaxon......
wow!! what a difference...... the meds are painful, but are able to be tolerated... and i have less appitite(good for me, as i can afford to lose lots of lbs) and i am not as tired, and have way more energy.....

so far no serious site reactions.......

good luck with it all.