Anyone had to quit taking a medication due to pregnancy? (long)

JunkieBrewster

I have an autoimmune disease and was on Remicade. I was sick of spending the entire day at the infusion center and asked to be switched to Enbrel. 

After 2 months of insurance dicking me around, I decided to do some research BEYOND what my rheumatologist told me.

FDA says about enbrel:

" are pregnant or plan to become pregnant. It is not known if Enbrel will harm 
your unborn baby. If you took Enbrel during pregnancy, talk to your doctor prior 
to administration of live vaccines to your infant. 
If you become pregnant while taking Enbrel, you are encouraged to enroll in 
Amgen’s Pregnancy Surveillance Program. You can enroll by calling 1-800­
77-AMGEN (1-800-772-6436). 
are breastfeeding or plan to breastfeed. Enbrel can pass into breast milk. You 
and your doctor should decide if you will take Enbrel or breastfeed. You should 
not do both. "

FDA says about the alternative:

are pregnant or planning to become pregnant. It is not known if REMICADE 
harms your unborn baby. REMICADE should be given to a pregnant woman 
only if clearly needed. Talk to your doctor about stopping REMICADE if you 
are pregnant or planning to become pregnant. 
are breast-feeding or planning to breast-feed. It is not known whether 
REMICADE passes into your breast milk. Talk to your doctor about the best 
way to feed your baby while taking REMICADE. You should not breast-feed 
while taking REMICADE. 
53 of 58 
Reference ID: 3403013 

If you have a baby and you were using REMICADE during your pregnancy, it is 
important to tell your baby’s doctor and other health care professionals about your
REMICADE use so they can decide when your baby should receive any vaccine. 
Certain vaccinations may cause infections. 
If you received REMICADE while you were pregnant, your baby may be at higher 
risk for getting an infection for at least six months after the last dose of REMICADE
you received during your pregnancy.

Now I am thinking I need to stay off both of them, but then I risk a flare up which is.. awful. I get awful mouth ulcers, uveitis, and the worst, vaginal ulcers when I will be seeing a OB for the next 7 months!

My particular disease, though (Behcets) often goes into complete remission during pregnancy, too.

Right now, I am thinking about ignoring my Rheumatologist saying it's safe and just staying off it. 

Any advice at all? I feel really, really stuck here.

hellopartyof5

No advice, but I congratulate you on doing research. I know this is a really tough decision, but you will do what's best for you and baby. Good luck and I hope you through remission while pregnant!

JunkieBrewster

summersunshine916 said:

I say ask your OB, if it were me I would go off both.

MY OB was all "It's safe" too. They are rated as category B, which SHOULD be safe but the own manufacturers and FDA say no.

Ugh.

jayellekay

Yes! I have RA and was on Enbrel, among other drugs. My rheumatologist had me discontinue it when I got a positive test, though she did say done people take biologics all through pregnancy. The reason we are not considering it is because I am well controlled on prednisone, which is definitely safe for pregnancy, so I just take that now until (if) I go into pregnancy remission. Good luck!

JunkieBrewster

Technically, I am off both. My remicade infusion was due at the end of April but I was waiting on Aetna to approve the stupid enbrel.

My husband suggests I stay off it during pregnancy and then not breastfeed and go back on it ASAP, but that makes me sad to even think about.

JunkieBrewster

For perspective, I have had 8 behcets related hospitalizations before I was diagnosed and properly treated.

I have permanent hearing loss due to the disease, and have to wear hearing aids. 

MaineMama

I have no words of advice, but I do (sort of) feel your pain. I was on topomax for migraines which I had to stop, and I have been on various prescription pain killers that I stopped due to personal choices. Percocet may be approved for pregnancy, but it makes me nervous.

I was dx'd with osteo arthritis at age 8 due to hip dysplasia. I also have Ehler-Danlos hypermobility which causes chronic pain among other things. I pretty much gimp around and wear my body brace looking like a dummy Then I take it off and ride horses, and then lay on ice/heating pads for hours. I'm smart.

I hope your rheumatologist has good answers for you!

JunkieBrewster

Also, to be clear, I'm not asking for medical advice. More of a personal expirience or WWYD type thing.

JunkieBrewster

jayellekay said:

Yes! I have RA and was on Enbrel, among other drugs. My rheumatologist had me discontinue it when I got a positive test, though she did say done people take biologics all through pregnancy. The reason we are not considering it is because I am well controlled on prednisone, which is definitely safe for pregnancy, so I just take that now until (if) I go into pregnancy remission. Good luck!

jayellekay They are weaning me off the prednisone. I was on 20 mgs for 3 years and am FINALLY down to 2.5! But if it kept me healthy, I would gladly go back up again.

hellopartyof5

kayhold said:

Also, to be clear, I'm not asking for medical advice. More of a personal expirience or WWYD type thing.

With your history, it's really tough but I think I would go off both. If you started getting really bad symptoms, could you go back on the meds? How long does it take for them to take affect? Sorry, I'm pretty ignorant about any immune diseases unifrtunately. 

JunkieBrewster

Birch113 said:

My SIL has Behcets. She was diagnosed until after she had my nieces, so I don't have any advice. I just know how awful it can be, and I hope you don't have any flare ups during pregnancy. (((Hugs)))

So random! Are you in the US? Its very rare to find someone in the US with it!

jayellekay

kayhold said:

jayellekay said:

Yes! I have RA and was on Enbrel, among other drugs. My rheumatologist had me discontinue it when I got a positive test, though she did say done people take biologics all through pregnancy. The reason we are not considering it is because I am well controlled on prednisone, which is definitely safe for pregnancy, so I just take that now until (if) I go into pregnancy remission. Good luck!

jayellekay They are weaning me off the prednisone. I was on 20 mgs for 3 years and am FINALLY down to 2.5! But if it kept me healthy, I would gladly go back up again.

It's so nasty. I was almost weaned off and relying fully on Enbrel when I got pregnant. Then I started flaring and I'm back up to 15 mg a day. Ughhhh.

JunkieBrewster

I think I'm going to contact my Rheumatologist and tell them I do not want to be on the medication. I know that they say is if safe but a big flaming FDA warning is just a bit too much for me. I'm going to see if we can up my prednisoe and keep me off the rest..
if I flare up the medication takes about 2 to 3 weeks to work and I could live with that.

Cheekers2010

So, here's my take. Background: I also have an autoimmune disease and was on En.brel for awhile. When I started it I was still breastfeeding my son and I made the decision to stop in order to start the Enbr.el. My doctor left it up to me, but I couldn't find any good research which supported the long term safety of breastfeeding and taking En.brel. It broke my heart but was the right decision for me. I am not currently on any biologics or prednisone because I haven't had a bad flare up in months and actually went into what I would call partial remission during my last pregnancy (that I m/c'd). I am hoping and praying that I don't flare during this pregnancy but I am well aware that I will probably flare horribly afterwords and have to stop breastfeeding. I try not to think about it too much because it scares the pants off me.

So, long story short, I would also stop. But, you should know that they really have to include those drug warnings. It's to cover their own asses in case you should take the drug while pregnant and something would happen and you would sue. Then they could say "Oh, hey, no dice. We told you not to take this.". It's a scary scary thing and there really isn't enough good research either way yet.

ashleykadlec

I have RA too! Is this your first pregnancy? With my first I was nervous about going off medication but my OB suggested I should. He also told me that typically RA symptoms are very mild during pregnancy, and for me they definitely were. So I just stopped taking my meds and it was completely managable. I was just on a steroid and a pain medicine though, I feel like yours might be worse than mine. If your concerned maybe stop taking meds and if symptoms are horrible you can address it then? I feel for you!!

JCKM

I take Remicade for UC.  They recommended that I not take it after 34 weeks which was fine because it lines up with the infusion schedule.  I have a healthy 3 year old and I took it while pregnant and breastfeeding.  We had to postpone the rotavirus vaccine but that was it.  

On a different note. If Remicade worked for you, ask your doctor about being infused over a shorter amount of time. About a year ago the new research showed that if you had more than x amount of infusions with no reactions you could have it administered over a 1 hour period. I hated how long it used to take too.

JunkieBrewster

JCKM said:

I take Remicade for UC.  They recommended that I not take it after 34 weeks which was fine because it lines up with the infusion schedule.  I have a healthy 3 year old and I took it while pregnant and breastfeeding.  We had to postpone the rotavirus vaccine but that was it.  

On a different note. If Remicade worked for you, ask your doctor about being infused over a shorter amount of time. About a year ago the new research showed that if you had more than x amount of infusions with no reactions you could have it administered over a 1 hour period. I hated how long it used to take too.

My problem wasnt so much the time, but that I can't take kids and have to find childcare ALL DAY which sucks when I have an inhome daycare!

Now they are informing me I am eligible for in-home infusion so I may stick with the remicade, after all. I dont know. Blarg.