please please please help...pregnancy advice

[mara_99]

Hi everyone,

My name is Maria, I am also HIV positive (for about 8 years) and I have been reading your posts for some time. I am going through a very hard and rough period right now,I feel very dissapointed and depressed;  I am facing the decision of taking ARV - though I said I will never do it. Any other natural treatment I used has failed in lowering my VL. I am planning for a baby in the near future. Therefore, I want to start ARV as soon as possile, as my numbers are pretty bad - though I feel great and have had no symptoms (VL 400.000, CD 4 250).  I hope and pray I will become undetectable in a few months, until then I am doing a little personal research. For those of you who have been there, please help me with a few answers:
- did you also take ARV during the first trimester of pregnancy? (I have seen that most protocols advise to take it preferably after that). I am aware of the guidelines.
- please tell me about your drug regimen during pregnancy
- where you undetectable at birth - and during the whole pregancy?
- how much time until you became undetectable, since you first started ARV?
- any other information would be great 
I highly appreciate any support  , I am truely at a crossroad in my life...
All the best to you and your families

[Ann]

Hi Maria, welcome to the forums! It's nice to meet you.

I'm glad to hear you have decided that ARVs are the way to go, as you have discovered yourself, there are no "natural" remedies that have any real effect on hiv. The only proven thing that will raise your CD4s and lower your VL are ARVs. Deciding to have a baby may well be the decision that saves your life.

The guidelines that talk about not starting ARVs until after the first trimester normally only apply to women who either 1) find out about their hiv when they test during pregnancy or 2) women who do not need ARVs before getting pregnant. You need ARVs NOW, regardless of whether or not you get pregnant.

I believe most doctors who know anything about hiv would advise you to go on ARVs first and get that rather high VL down to undetectable before thinking about becoming pregnant. A high VL like yours can take some time to go undetectable and you may not be anywhere close to UD by delivery if you start three months into your pregnancy. For the baby's safety, you want to be UD by your delivery date. Actually, it's a good idea to be UD well before the delivery date, just in case of premature birth.

One of the most widely used combos is Combivir and Kaletra. It has been proven safe and effective for use during pregnancy. You also have the choice of taking another combo until you become undetectable and then changing to Combivir and Kaletra before attempting to conceive.

i-Base is a British website that has a lot of very good information on hiv in general as well as treatment. As the British guidelines are very close to the European guidelines, it's an excellent place for you to start.

Their Pregnancy Guide will tell you pretty much all you need to know about treating hiv in pregnancy. It is also available in several translations and they may have one in a language you feel more comfortable with, such as Romanian. (There are several hiv manuals available in Romanian, so make sure you check out the translations page I linked to above.)

Good luck! I hope you decide to start treatment as soon as possible. We don't want you to get sick and die before you realise your dreams. It can happen very quickly and it's common for someone with numbers like yours to feel ok, but then suddenly become very ill and close to death. Please don't let that happen to you! Today's treatments are very effective and usually well-tolerated, so please don't be scared.

Hugs,
Ann
xxx


edited to add additional links

[Sweet_C]

Congratulations on your decision to have a baby!!  Motherhood is a wonderful journey.

- did you also take ARV during the first trimester of pregnancy? (I have seen that most protocols advise to take it preferably after that). I am aware of the guidelines.
I did take meds during pregnancy.  I had already been on Isentress and Truvada, but switched to a regimen recommended for pregnancy
- please tell me about your drug regimen during pregnancy
I took Combivir, Reyataz and Norvir as soon as started trying to conceive.  I didn't have many side effects at all from this regimen after the first couple of days.  I took all three drugs in the morning and an additional Combivir tablet in the evening.  I had a headache the first day I took it.  Also, if I took the Norvir without food, I would get a single bout of diarrhea.  I switched back to Isentress/Truvada shortly after my baby was born.  I don't know much about the available options out there for pregnancy, other than they will probably put you on something that has AZT in it (Combivir)

- where you undetectable at birth - and during the whole pregancy?

I was undetectable at conception because that will give you the absolute lowest chance of transmitting the virus.  If you're undetectable at birht, I believe you have a 99.9% chance of your baby being HIV negative.    If a woman is undetectable at birth and the baby still is HIV positive, that usually means that the baby was infected in utero.  It's pretty rare, but can happen if your viral load is high at the time of conception.  I don't think I've found a case where a baby was infected where the mother was undetectable since conception.

- how much time until you became undetectable, since you first started ARV?

It took me less than two weeks, but I started treatment early shortly after I was infected even though my numbers were still fantastic.

- any other information would be great 
OPrepare yourself for the fact that your OB/GYN will probably have no experience with HIV and you may have to educate him or her.  That was the one thing I did not like about my pregnancy.  Nothing terrible, but I did feel like my pregnancy was a bit of a spectacle.  On the positive side, I think it was a very educational experience for my doctors.  Also, you will have to ask your ID specific questions about your own care.  For instance, I had a very long labor, and I wasn't sure if I was supposed to take my meds along with the AZT drip.  My doctors had no clue.  Turns out you're supposed to take your meds as normal.

Also, for pediatricians, try to find someone who specializes in pediatric infectious disease.  The protocols for testing are very confusing, and you want someone who knows the ropes and can guide you through the process.  I found my doc days before my baby was born and I wish I had found him a litle before so I could have understood what testing my baby was supposed to get.  My baby ended up getting her first DNA PCR test at 9 days instead of birth because no one knew the protocols. 

Good luck!

[mara_99]

Hi,

Thank you very much for your replies.
Ann, I have been browsing your blog, and have noticed that you mention a series of people that were dear to you and that died of AIDS. Please tell me about them: where they on  ARVmedication? Why did that die exactly? I am still trying to figure out the impact that ARV has on one's health, ad any info would be important to me. Thank you
M.

Hi Maria, welcome to the forums! It's nice to meet you.

I'm glad to hear you have decided that ARVs are the way to go, as you have discovered yourself, there are no "natural" remedies that have any real effect on hiv. The only proven thing that will raise your CD4s and lower your VL are ARVs. Deciding to have a baby may well be the decision that saves your life.

The guidelines that talk about not starting ARVs until after the first trimester normally only apply to women who either 1) find out about their hiv when they test during pregnancy or 2) women who do not need ARVs before getting pregnant. You need ARVs NOW, regardless of whether or not you get pregnant.

I believe most doctors who know anything about hiv would advise you to go on ARVs first and get that rather high VL down to undetectable before thinking about becoming pregnant. A high VL like yours can take some time to go undetectable and you may not be anywhere close to UD by delivery if you start three months into your pregnancy. For the baby's safety, you want to be UD by your delivery date. Actually, it's a good idea to be UD well before the delivery date, just in case of premature birth.

One of the most widely used combos is Combivir and Kaletra. It has been proven safe and effective for use during pregnancy. You also have the choice of taking another combo until you become undetectable and then changing to Combivir and Kaletra before attempting to conceive.

i-Base is a British website that has a lot of very good information on hiv in general as well as treatment. As the British guidelines are very close to the European guidelines, it's an excellent place for you to start.

Their Pregnancy Guide will tell you pretty much all you need to know about treating hiv in pregnancy. It is also available in several translations and they may have one in a language you feel more comfortable with, such as Romanian. (There are several hiv manuals available in Romanian, so make sure you check out the translations page I linked to above.)

Good luck! I hope you decide to start treatment as soon as possible. We don't want you to get sick and die before you realise your dreams. It can happen very quickly and it's common for someone with numbers like yours to feel ok, but then suddenly become very ill and close to death. Please don't let that happen to you! Today's treatments are very effective and usually well-tolerated, so please don't be scared.

Hugs,
Ann
xxx


edited to add additional links

[TabooPrincess]

- did you also take ARV during the first trimester of pregnancy? (I have seen that most protocols advise to take it preferably after that). I am aware of the guidelines.

I started meds around 20 weeks of pregnancy, you can see my numbers in my sig below.  I think that the guidelines are earlier in America than in the UK.

- please tell me about your drug regimen during pregnancy

Kaletra, viread and AZT.  I had minimal side-effects, bad diarrhea some days but other days ok.  I stopped taking the meds the day that the baby came.

- where you undetectable at birth - and during the whole pregancy?

I never managed to get to un-detectable (see signature again) so I had a c-section and triple therapy for the baby afterwards, including AZT drip at the birth.

[mara_99]

Thank you very much for the reply:)
One more question: why did you decide to stop the meds after you had your baby?
And: I suppose the baby is 100% healthy, yes?
Thanks again

- did you also take ARV during the first trimester of pregnancy? (I have seen that most protocols advise to take it preferably after that). I am aware of the guidelines.

I started meds around 20 weeks of pregnancy, you can see my numbers in my sig below.  I think that the guidelines are earlier in America than in the UK.

- please tell me about your drug regimen during pregnancy

Kaletra, viread and AZT.  I had minimal side-effects, bad diarrhea some days but other days ok.  I stopped taking the meds the day that the baby came.

- where you undetectable at birth - and during the whole pregancy?

I never managed to get to un-detectable (see signature again) so I had a c-section and triple therapy for the baby afterwards, including AZT drip at the birth.

[TabooPrincess]

Baby is fine, doing really well.  I stopped the meds afterwards because I didn't need them for my own health.  I'm still not on meds now so it worked out ok. xx

[whoknew]

I have had two babies whilst positive the first I started a combination of medication including azt when I was in the second trimesta I discontinued this after my baby was born as I only needed it to keep my numbers undetectable during pregnancy.

I was undetectable after about a month of starting them and undetectable at the birth

2nd child I fell pregnant whilst on the drug atripla which is not recomended during pregnancy ( but the guidelines may be changing) was undetectable throughout the pregnancy and birth

Both times I had a cesarian but I could have had a natural birth as was undetectable gave babys zt for 4 weeks after birth. I didnt have any side effects from either regime and both my babies liked the azt formula as I think they flavour it.

Both children are negative and i remain well good luck for your future

[Snowangel]

Hi-

I have had 2 pregnancies since becoming poz.

My first was one child, natural birth, because he came early, I was undetectable and on meds, can't remember which ones.  He is neg. He had AZT for 6 weeks.

Second, was 3 babies. I was undetectable and on different meds from my first (I think), they also came early but I had a c-section. They are neg. They had AZT for 6 weeks.


My advice to you is start on meds and let your body and mind get used to being on meds. The women here gave you a lot of good advice. I wish you the best of luck
Snow

[27years]

I was on medication and undetectable for about a year or more on Truvada, Reyataz, Novir.  I stayed on the combination during and after pregnancy.  I gave birth by C section because of pregnancy complications but could have given birth naturally.  My baby is going to be a year this month and all the test so far have been negative.  I suggest you start the meds so that your body gets used.  You might not have side effects on them.  My body tolerates them fine and i actually wonder why i feared starting them.  Motherwood comes with its ups and downs but you will manage fine.  Wish you the best

[mara_99]

Thank you very much for all your answers! I started Combivir and Kaletra a few months ago, I am waiting for the results this month. As soon as I get to undetectable, I will be trying for a baby  I hope everything will be OK... Kisses

[Ann]

Good luck! Keep us posted.