ITP and Birth control

So, I had my blood checked yesterday and my numbers look great at 242. It has been about a little over a year since my diagnosis and about a year since my first Rituxan infusion. I just recently got engaged and asked my hemo about birth control. She said that if it was up to her she would have me "hold off" until I am farther away from my initial diagnosis date. She said that the hormones in the birth control could possibly throw some things off since I'm not completely out of the woods yet. She then followed that statement with : BUT I DO NOT WANT YOU TO GET PREGNANT. THAT WOULD BE VERY BAD RIGHT NOW. I have NO plans for that happening. But it made me think...well I'm in a pickle aren't I? Obviously, when I get married I will need the birth control to ensure that I won't get pregnant. But what if it screws up my counts...but without it I could get pregnant and then be in a whole other mess? Ugh....why does it have to be so confusing! I took it like I would be able to start the birth control once I've been in remission longer. Does anyone here have any information on ITP and birth control pills? Any personal experiences involving the two? Did anyone's counts drop because of it? And what about pregnancy...I will be able to have children right? Thanks!

Natalie

Hi Natalie,

there are other ways to make sure you don't get pregnant.. wich may be less confinient but it's better then getting pregnant..
I thought birth control wasn.t big problem and was even given to itp patients to get their periods under control.. but mayb i'm wrong..

Xx

Lots of ITP women find they do better on birth control. Lighter or no periods, depending on how you take them, and most don't seem to find their counts affected. Some autoimmune conditions improve during pregnancy and on birth control pills, and others worsen. I think you would not know unless you tried it, but your doctor may think that's too much risk. What about diaphragm, condoms, the new IUD-type devices, the ring? There are more options than the pill. I'm no doctor, and I don't have ITP. (My kid does.) I wouldn't want to be pregnant with ITP as a newlywed. There are enough wonderful and not so wonderful adjustments to make when two people join their lives. Don't need an extra stressor in there right away.
Norma

Oh I totally agree! And that is definitely NOT the plan. Right now we are looking into other methods. I, too, have heard the BC is better in that it helps out with periods ect. I guess I'll just wait for a little longer remission and then look into other options. Thank you guys for your input!

Nat

I was on BC way before my ITP began, and I'm glad I was on it because before being diagnosed, I had one very bad period. And I think that if I hadn't been on the BC, it might have been even worse. A few weeks later, I was diagnosed with ITP at 6,000 platelet count. Everyone's different but just wanted to let you know my experience. By the way, I had a splenectomy in 2006 and have been at 200k since, and still on BC.

I've been on the pill for about 10 years now, and i can only assume it's made no difference to my ITP, as my periods are crippling when i come off it! perhaps your haemo needs to be a bit brave, and give it a go. you're at a count that most of us can only dream of, so now is the time to try it (and monitor you closely) and see how you get on. there are plenty of types of contraception out there so if pills aren't for you, then the most common types are condoms and the IUD. I've never known anyone ever use a femidom, because they're so awkward to insert, and kinda spoil the moment.

Another thing to bear in mind, especially if it's your first time, is that you're likely to bleed during or after - not a lot, but it's more so that you don't panic if it happens. It's one of the quirks of ITP, and it seems to happen to a fair few of us. Part of the reason I was so gutted when I split up with my last boyfriend was because he was the only one who didn't make me bleed.

Have you considered NFP? My wife and I have successfully been using this method for 15 yrs of our marriage. No chemicals, no drugs, no foreign objects, just natural. I understand that NFP has greater rates of success than any other methods except abstaning. Couples that pracice NFP only have a single digit divorce rate too. Keep in mind I have ITP since 1992 and my wife has relative normal cycles.

Since you're the one with ITP and not your wife, then that's quite different. I'd imagine that NFP takes a while to make sense of and also ruins spontaneity - hardly practical when you're a newlywed.

Your other option is the contraceptive injection (which can be done sub-cutaneously so you shouldn't bruise) but some girls do report that it does lower their sex drive quite dramatically.

One day they'll dream up a concoction to temporarily sterilise men for X many years, and an antidote to reverse this when they want to have children.

Natalie:

Most people find that being in remission for a year is a prime time to do things they wouldn't have done before (start BC, have a baby). Waiting only ends up putting you in a time period when most remissions end (not that yours will). So she's telling you that getting pregnant or using BC are both very bad? That doesn't seem to be an accurate statement in dealing with ITP.

I would suggest an IUD (copper one, no hormones). After my son was born in 2007, I went on the pill in October 2007 and November 2008, I got diagnosed with ITP (platelet count of 9,000). I was on prednisone up until May 2010, tried ivIG, but every time I tried to get off prednisone, it would be hell. In May, I finally got off and my counts stayed at around 20k. My doctor just said to wait and see if my body would gradually improve. It didn't. Then in August I ended up with blood clots on my lungs caused by BIRTH control. Nice eh? I was in the hospital for 2 weeks, so obviously I couldn't take any pills. As soon as I got off the birth control, my platelets slowly started climbing. Now the doctors are saying that my low platelets might have been caused by the birth control pills. We are now 7 months later and my platelets have gone from 20k to low 100k. They are slowly climbing every month. I have to take blood thinners for my clots (which are almost gone) but because I am a married woman (hehe) I have to be on BC. So I tried the copper IUD. It took couple of months to get used to but now I love it! And it's good for 5 years.

Does the copper iud help with heavy cycles? I Shouldn't take anything with hormones either due ITP and PNH (which can cause clots, ever been checked for that?) anyway I take a Nora be b now and it has it's own issues. Helps with heavy cycles but they have been lasting 2-3 weeks sometimes...very sporadic. Just trying to find some other option.

Thanks

There are several problems with taking birth control and having ITP. I know BC can be unavoidable sometimes if counts are down and bleeding is heavy, but those with autoimmune disorders should be careful.

First, BC can mess with hormones. Hormone changes can trigger autoimmune disorders in those with a predisposition.

Second, 33% to 40% of those with ITP also have Antiphospholipid Syndrome, which are antibodies that can cause blood clots. Since BC can cause blood clots on its own, a person with APS antibodies can be at a higher risk.

I'm glad to see someone indicate that those with a predisposition can have problems while on BC. I had absolutely no problems with my blood count and was even a favorite for donating until I took BC pills. Twice. First time was real minor with pitechia (sp?) on the legs after 3 months on BC. Self-corrected after getting off the pill. A number of years later we (ob/gyn & I) thought I could try a newer, lower and progressive dose pill. Within 6 weeks I experienced horrible bruising. Diagnosed at that time with ITP. Did not self-correct this time. Hemotologist said it was impossible the pill caused it. My ob/gyn believes it did. I tried to tell the hemotologist I was probably that 1 in 100,000 that had a com/pletely opposite than typical reaction. And I agree to the hellish bout of prednisone. After a few months and I got out of immediate danger, we decided to wean me off the steroids. It took almost 2 years to get my count up to my normal range with close monitoring without prednisone. I can no longer donate blood, but on the bright side I haven't had a recurrance in the last 12 years. Well, I also have not done any oral birth control or hormone therapy, either.

Birth Control did mess with my platelets and sent me into a flare back in 2005. I was using the nuva ring and my rheumatologist made me take it out immediately... I knew I definitely couldn't take oral birth control, but I thought the nuva-ring would have been safe... boy was I wrong, my platelets dropped all of the way to 5,000..

In the same boat. My doc doesn't want me to get pregnant but no hormones either.. so I think I'm going to go and get an IUD copper.. ugh.. then probably get my tubes tied. I have 3 healthy little ones so we are okay with being done.. but I would have liked to get Mirena since I know what that feels like and had it with my first son. Heard some scary stories about the copper.. so I'm still doing researching.. I'll let you know