Heparin nightmare!

775 Views 16 Replies 8 Participants Last post by amycurlygirl, Aug 18, 2006

amycurlygirl

Discussion Starter · Aug 16, 2006

I'm 38 weeks today. Have factor V lieden. due for a c/s in one week.
Started heparin instead of lovenox at 35 weeks. two shots/day.
It's started such a rash that's progressively gotten worse.
It itches, is red and bumpy and burns.
I mentioned it to my doc on Monday and he didn't say much about it.
Then I called him yesterday about it. They said take benadryl and use the cream with it.
I took 2 benedryls last night-one did nothing. It knocked me out!!!
The cream did nothing with the pills. Even though I was knocked out, I still itched.
Now today the doc wants me to take the benedryl 2 times a day saying once it builds up in my system, it'll get better.
I don't like taking that stuff and it didn't help at all last night.
I told him I want to stop the shots.
I can't take it anymore!
It's just zapping these last weeks of pregnancy. I just want it over.
I wonder how bad of a risk it would be to stop the shots so early.
I'm having an allergic reaction and it's misserable.
Any thoughts???

1 - 17 of 17 Posts

mzfern

· #2 · Aug 16, 2006

No advice here, only sympathy

It sounds like you're miserable! Your OB doesn't sound very helpful or concerned. I hope you can find some answers/relief soon.

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sunnyjoe

· #3 · Aug 16, 2006

I'm scheduled for a c-section and my OB just opted to have me stop the lovenox 24 hours prior to the surgery. My understanding is that the switch to heparin is for women who may go into spontaneous labor since it stays in the body a shorter time and can be reversed. With a scheduled c there's time to just stop the lovenox (and resume it afterwards if needed). You might want to ask about that option since the heparin sounds miserable.

Teakafrog

· #4 · Aug 16, 2006

Ask your Dr. about switching brands of heparin. I had the same kind of reaction to the first brand I tried, Dr. said I was allergic to the dilutent. I got another brand, and all the itchy/swollen/red welts went away. Ask your pharmacy what other brands they can get, they are all mixed differently and different inactive ingredients.

LeosMama

· #5 · Aug 16, 2006

Several questions: why can't you take Lovenox instead?
- why do you have to have a c/s? women with your condition can labor and birth naturally just fine, as long as they have been taking their thinners.

http://fvleiden.org/stories/bothell.html
http://www.naturalchildbirth.org/nat...prebirth35.htm

Have you ever had a DVT episode? Are you homozygous or heterozygous for the gene? Many women with FVL choose not to undergo the heparin treatment at all, but that would depend a lot on what your diet is like, and what your history is (have you had an episode in the past or since becoming pregnant?). And why did your doctor only choose to start heparin this late, when you were at risk through the entire pregnancy?

Make sure you FULLY understand why you need this treatment and why you need a c/s and what the risks of a c/s are (more complications from epidural in women using blood thinners, major surgery is a MAJOR issue for people with clotting disorders, etc).

Naughty Dingo

· #6 · Aug 16, 2006

Oh Mama, that sounds terrible. I too would ask about switching back, or switching to a different brand/formulation.

Good luck, it won't be long until your sweet babe is safe in your arms.

ND

amycurlygirl

Discussion Starter · #7 · Aug 17, 2006

Yeah, no mention of a different brand. I may have to call my pharmacy to get help with that one. That may be a good angle.

Why switch from lovenox to heparin? Well, I'm in Ohio and due to insurances here for docs it's tough. The rule is that docs can't take a baby earlier than 39 weeks by c/s. CRAZY if you ask me. So, the likelyhood of me going into labor is good. My doc is really by the book and won't budge with the date unless it's an emergency.

So heparin it is.

I'm going to call the pharmacy right now.

amycurlygirl

Discussion Starter · #8 · Aug 17, 2006

Well this is living in rural ohio for you...
the pharmacist said he never heard of a "different" brand of heparin and suggested I switch to a different blood thinner like lovenox.
I didn't even want to get into it with him.
I'll just try to do one shot per day and see how that goes.
I stop the asprin tonight. I'll have to pay close attention to my kick counts.
It's only till Sunday. Wish me luck

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orangefoot

· #9 · Aug 17, 2006

If you are having a scheduled section then there's no reason not to continue with the Lovenox as the risk is related to bleeding in the spine from the epidural and the lovenox can be stopped 12 hours before the surgery.

Maybe returning to Lovenox would be better if you arehaving an allergic reaction to the heparin.

If you have a spontaneous onset labour will you still have a c/s? Leosmama is right in flagging the risks of c/s to those of us with blood clotting disorders and it may be safer for you in the post partum period to have had a vaginal delivery.

If the c/s is only due to the blood clotting problem then there may still be time to discuss other options with your doctor.

Sorry if I am speaking out of turn and there is another reason for your c/s that you don't want to discuss.

LeosMama

· #10 · Aug 17, 2006

Wishing you luck!

Do you mind my asking about the aspirin? It is a prostaglandin inhibitor, I thought that was considered dangerous to take in late pregnancy due to causing the ductus arteriosis to close while in utero. So why is it okay for you to take aspirin right now?

I'm not meaning that to be challenging, just am curious about it.

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5thAttempt

· #11 · Aug 17, 2006

I also can suggest to try to use thinner needles, I used heparin at the beginning of the pregnancy for 2 month due to the fact that my old insurance did not covered lovenox. First I had terrible reaction too. It dissapeard after 2 days, but I also started using 30g needle - it is very thin and actually thinner then the one lovenox has. My first 2 days I used 25g needle - they hurted!

amycurlygirl

Discussion Starter · #12 · Aug 17, 2006

Honestly I don't know about the asprin. I took it last pregnancy and I'm doing it again this pregnancy. Everything turned out fine the last time.
It's only a baby asprin and is quite common for LFV patients.
I also used the lovenox last time up until 2 days prior to being induced.
There's much bigger chance of me going into labor this time due to the docs restriction of waiting until week 39. I could tell he was nervous about waiting that long, but he has no choice. I pretty sure that's why he won't let me take the lovenox instead. He'd rather see me risk taking nothing at all.
If you all knew OHIO at all, you'd understand some of the docs here. Our insurance is a mess!!!! He also doesn't allow vbacs for liability purposes.
No choice on my part. I'd have to drive 2 1/2 hours to go to someone that would let me do a vaginal.
Maybe you all should visit the country for a while and see what we deal with. It's a trip! I'll tell you!

sunnyjoe

· #13 · Aug 17, 2006

Sorry you're caught in this bind. The 39 weeks rule seems crazy to me but it does make clear why he's more comfortable sticking with the heparin. Will you continue blood thinners pp? I will do five days of lovenox/coumadin and then coumadin alone to six weeks (I have protein S deficiency). Am looking forward to stoppping shots.

I was on low dose aspirin all pregnancy too. Just stoppped on Sunday.

I hope all goes well for you!

amycurlygirl

Discussion Starter · #14 · Aug 17, 2006

When's your c/s planned? I did the lovenox last time like you are. Right up until before the c/s and it was fine.
I'm going to do lovenox after for 6 weeks. I'm going to try to BF so that's why not the coumadin.
This doc is really interesting. He wants me on blood thinners for the rest of my life due to the factor V. I think he's nuts!
And besides, after this pregnancy, I probably will never go to this doc again anyway.
These shots are the pits aren't they???
Does your insurance cover them? I have to order mine from Canada due to the expense. Again, wonderful Ohio insurance

Gotta love it.

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sunnyjoe

· #15 · Aug 17, 2006

My c/s is scehduled for tomorrow! <Gulp> I plan to breastfeed as well and was told that coumadin was okay. I specifically told my doc I didn't mind continuing the lovenox if I needed to but he said the coumadin not a problem for breastfeeding. I see that the APA (Pediatrics Association) says it's okay while bf... what concerns specifically did you/your doc have?

I have heard of others being told they need to stay on for life. I hope for all of you that they come up with a decent alternative to the injections.

My insurance does cover the lovenox, I've been fortunate that way. It looks like it would cost me about $1500 a month otherwise!

Teakafrog

· #16 · Aug 18, 2006

My RE who diagnosed my factor V told me to just take a baby aspirin a day (forever). So glad I don't have to be on coumadin. And to OP, your pharmacist is a nut job. Many different pharmaceutical companies make heparin shots, each company uses a different dilutent. This guy is a registered pharmacist? Or was it just one of the techs, who have no pharmaceutical training? All he has to do is order it from a different company!! What an idiot!

:

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amycurlygirl

Discussion Starter · #17 · Aug 18, 2006

3

WOW tomorrow???? If you see this... best of luck!!!!!!!!!!!!!!!!!!!!!!!!!!
Are you nervous?
I'm not sure what concerns he has for the coumadin. He just said are you nursing, I said yes and he said ok, so we keep you on the lovenox. If you were bottle feeding, we'd put you on coumadin. I wouldn't fret about it though. This doc is kind of an idiot. He just likes what he likes. Whatever.

Yeah, the lovenox is insane for me to pay for!!! for a months supply it's about $350! That's through canada which is less than my insurnace here in the states!
That's really messed up!
I always thought an asprin a day as well. I think that's how I ended up pregnant the second time. OOPS- well, not really

You know what I mean

Anyway, I guess there's been some new info released to the medical community that suggests that FV requires blood thinners for life. When he told me about it, he had just read the article and was all fired up about it.
We'll see if that's what he says now. This ob's a whacknut and I can't wait to be done with him.
We have a lot of cooky professionals here where I am. The pharmacist I talked to is one, but not the one I normally deal with. I thought of calling back to talk to the other one, but I'm just going to take two more shots and don't know if it's worth the craziness of explaining it all again.
I tried another shot today. Skipped last nights. I'm itching like crazy again!!!
I went in for a NST today and the resident said-- did Dr. so&so see this????
She was shocked at how bad this rash is. It made me start crying

I'm just tapped out and want to be done with the whole thing.
Too bad I can't just sit back and enjoy these last few days of pregnancy. This will be our last for sure!

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