Recently diagnosed was tring to concieve should I start meds?

[Dizzylizzyd]

Hi all,
I am new here but am comforted by all of the information on here. I was diagnosed with RRMS 2weeks ago. I am 34 and was on the brink of starting a family when my first symptoms presented about 3 months ago.

After speaking with my neurologist, I am starting on avonex. The meds just came yesterday but it may be a week or so before a nurse comes for training. I asked my neuro if I should start meds or start trying for a family. He said do meds for a year then try.

However I am 34 so I am rethinking all of this. I was wondering if here is anyone out there who has experienced this and what they decided to do. Any insight would be great.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Mynamegoeshere1]

32

I had just turned 32 when I got diagnosed (9months ago). I have been on copaxone, betaseron and currently i am on a washout period to start tysabri. I had only been married for 3 months when I got diagnosed. My Dr. gave me the decision to research which DMD I felt most comfortable with. I chose Copaxone.

When my shared solutions nurse came to train me, she shared her MS story with me also. On her first child, she went off of the copaxone for a month before ttc and during the whole pregnancy. For her 2nd pregnancy, she stayed on copaxone the whole time and her baby is just as healthy. I think copaxone is the only one that some dr's (they dont all agree) will let you stay on during pregnancy.

I, too, have been having issues with this decision. After I had to stop my 2nd DMD, I asked my Neuro and even went and got a 2nd opinion as to whether I could just try for a baby right now instead of starting the tysabri. Both neuro's confirmed that I am not healthy enough to carry a baby right now. If you don't feel comfortable with your Neuro's decision, feel free to get a 2nd opinion.

I am not sure how bad your symptoms are and what came about to get you diagnosed, but I wish you a lot of luck. Some people choose not to take any medication for their MS. I, personally, do not advocate that as the earlier you get started, the more likely the dmd can help your progression. What are your symptoms right now?

[Dizzylizzyd]

My symptoms are actually not that bad. I've been on a few rounds of solumedrol infusions and I think that has helped. I lost balance for a while but I am fine now. The only lingering symptom is major blurriness in one of my eyes. A little fatigue but nothing major. Funny, I have been just reading about copaxone and pregnancy and my neuro never said anything about it. He suggested going on avonex for at least a year before trying, but again, I just turned 34. I'm so spring chicken LOL

[Mynamegoeshere1]

symptoms

I would try to get a 2nd opinion. It might be worth it for you. Just know that some women do have relapses during pregnancy, although a lot find pregnancy to be a great thing for their MS. Alot of women also are subject to a BIG relapse after giving birth. One dr. I saw said he gives his patients IV steroids as soon as the baby is delivered and he has noticed a significant decrease in relapse with his patients.

Im terrified to keep waiting too even at 32 since you don't always conceive right away.

[Hlouis]

First of all, 34 is quite young! I'm 42, was diagnosed when I was 34, so I know how you feel - I was diagnosed w/ RRMS 8 years ago when my son was 2...my doc told me to go on meds for a year & then re-evaluate my health & whether or not to have more children.

I started on copaxone for +\- 2 yrs, had several relapses, then went on avonex for a short time but my doc really wanted me on tysabri, which had been pulled from the market before I could start it...finally went on Tysabri for 2 yrs.

I wanted another child so much, but my sweet hubby was worried about my health - a lot falls on him b/c extreme fatigue is prevalent for me. Finally, 3 yrs ago, he relented & I got pregnant w/ son #2. Tysabri is a fabulous medication for MS, but virtually untested for safety during pregnancy, & I didn't want to act as guinea pig w/ my baby, so I went off everything & had a great pregnancy...this is apparently relatively common - women w/MS experience a remission w/ pregnancy....BUT, most have a significant relapse w/in 6 months of giving birth...I had mine six weeks after. We were expecting it, but it was hard...BUT, I wouldn't have changed it for anything - being a 42-year-old mom of 2 boys is a challenge - throw in the MS & it makes life even more interesting! .

Basically, I guess after all that what I'm saying is that its really completely up to you - ur MS will still be there whatever u do & no one can say w/ certainty how pregnancy will affect ur disease progression. Also, this may be horrible medical advice, but I would strongly encourage you to stay off MS meds for your pregnancy. None of the MS meds have been extensively tested for safety during pregnancy & you will most likely experience a 'pregnancy remission'.

Your doc's advice to start meds & wait a year is sound & wise...but, if ur ready to have a child now Do It!!! Just go into it w/ open eyes - having MS will change ur life in many ways (good & not-so-fab) AND having a child will, too!!!

This is really long - sorry, if it's too much info - but when I was at your age/stage of diagnosis & family I wish someone had told me some of this stuff! I'll keep you in my prayers - this is a really challenging & stressful time for you - please let me know if I can help with anymore long-winded novelettes of info/insight . Take good care

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[LKJ.RPH]

Hi Dizzy....

First of all, Im sorry about your diagnosis. I am 28 years old and was diagnosed almost 2 years ago. I have a great husband who really has tried his best to be there for me at all times, but we know men can fail at that

Anyways, after diagnosis my neuro. asked what our family plans were. At that time, we were not in a hurry and I kinda blew it off and continued on my copaxone.

A year later, I was pregnant and excited. Unfortunately, we ended up losing the pregnancy a few weeks in, which I can honestly say was the worst experience of my life (not only due to the loss of preg. but physically it was very painful, etc).

So now, another year later, I am 13 weeks pregnant! We have had two ultrasounds and heard a heartbeat both times , which is kind of wonderful! However, Im still not as excited as I thought I would be, just protecting myself I supposed.

But in the time between pregnancies, I never went back on my meds. I would do an injection here and there, but not consistent in ANY way! I did have a slight problem with some numbness in my face at that time, but it has since resolved. I have never had any major problems/relapses of MS.

Sooooo.... this whole process was probably the most difficult of my life, trying to decide about out family. The best advice I can give you is to inform yourself. Read everything you can, and talk to other with MS who have been down the same path. It will fall into place. I think for Avenox it's 3 months that you should stop before trying to conceive, so that isnt very long at all.

When I was first diagnosed, I decided to try to get a handle on this MS issue before trying for a family. I wanted to make sure that I could take care of myself before I would be taking care of a little creature too!! Hope this hopes, sorry so long....

[PeacheyPie]

Hi all,
I am new here but am comforted by all of the information on here. I was diagnosed with RRMS 2weeks ago. I am 34 and was on the brink of starting a family when my first symptoms presented about 3 months ago.

After speaking with my neurologist, I am starting on avonex. The meds just came yesterday but it may be a week or so before a nurse comes for training. I asked my neuro if I should start meds or start trying for a family. He said do meds for a year then try.

However I am 34 so I am rethinking all of this. I was wondering if here is anyone out there who has experienced this and what they decided to do. Any insight would be great.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

Hi Dizzy,

I'm in the exact same situation! 99%DX last month, and last time I saw him he said he still wanted to wait for the LP results but to seriously consider going on Avonex. I asked about starting a family and he said then that Copaxone might be a better option.

I talked with my husband and we agreed that it would be best if I wasn't on the meds while pregnant. So at my appointment with my Neuro next week I'm going to tell him that we are trying to have a baby and if I don't get pregnant in x amount of time then we'll consider it.

I thought about it this way: It's 9 months of my adult life, but it's the most important 9 months of my baby's life.

I told my husband about the chance of relapse after giving birth and possibly going on steroids again and getting on a dmd right away after birth, and not being able to breast feed and he wasn't too happy about that. I guess it's something else we need to talk about.

Ultimately it's up to you and what you feel most comfortable with. Let me know what you decide!

[mommyto3angels]

I was diagnosed after my last child was born so I'm not much help to you but I did want to add my first symptoms started when I was pregnant with her. My ob wanted to send me to a nuero but my insurance wouldn't approve it. My legs started going numb to the point I fell alot during the pregnancy. At first my ob thought the baby was on a nerve and gave me a belt thing to lift her up but it didn't help. I ended up on complete bedrest and after she was born I had my first real Flare and lost feeling in the right side of my face and body for almost 2 months. If I was in your position I would wait the year on the meds just to make sure your body has had time to recover. Caring for a newborn when having a flare after giving birth is very hard.


This is only my opinion, I wish you luck in whatever you decide to do

[Mynamegoeshere1]

hmmmm

I was diagnosed after my last child was born so I'm not much help to you but I did want to add my first symptoms started when I was pregnant with her. My ob wanted to send me to a nuero but my insurance wouldn't approve it. My legs started going numb to the point I fell alot during the pregnancy. At first my ob thought the baby was on a nerve and gave me a belt thing to lift her up but it didn't help. I ended up on complete bedrest and after she was born I had my first real Flare and lost feeling in the right side of my face and body for almost 2 months. If I was in your position I would wait the year on the meds just to make sure your body has had time to recover. Caring for a newborn when having a flare after giving birth is very hard.


This is only my opinion, I wish you luck in whatever you decide to do

You are subject to have a flare no matter if you have been on meds for a year or not prior to pregnancy. The medicines will not make a difference. You do, however want to be in the best health you can be.

[hope32]

I had my first attack when I was just turning 25, but didn't get officially diagnosed until my second attack 6 years later, when I was just turning 31. I went on Copaxone for about 6 months and then went off it to TTC. (I talked to my MS specialist about it first and he felt like it was reasonable.) If I were in your shoes I would consider going on meds for a while first as a protective effect--not forever (and I'm not sure how long Avonex takes to be effective)--but maybe 6-12 months, and then go off to TTC. Such a personal decision though; I would really talk it through w/your dr!

[aitch10]

If you want to try for a family then I would try THEN go on meds. If you were younger I'd suggest following your doctor's orders but...

[Kenmore]

Hi all,
I am new here but am comforted by all of the information on here. I was diagnosed with RRMS 2weeks ago. I am 34 and was on the brink of starting a family when my first symptoms presented about 3 months ago.

After speaking with my neurologist, I am starting on avonex. The meds just came yesterday but it may be a week or so before a nurse comes for training. I asked my neuro if I should start meds or start trying for a family. He said do meds for a year then try.

However I am 34 so I am rethinking all of this. I was wondering if here is anyone out there who has experienced this and what they decided to do. Any insight would be great.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

I've heard that MS symptoms get better during pregnancy, but you should not us medications during that time.