TOPIC:

Hi,

I'm new to these forums, but not new to ITP. I've had it since I was 8 and I'm 40 now. I posted a more complete introduction over on the main board, but I want to ask specific questions about managing bleeding from the gynecological side here.

I have never been on hormonal birth control (when I was 13 and started menstruating I was told I may need to be put on the pill, but things never reached a point where that was necessary). In the last year my monthly cycles have become increasingly ridiculous. I've always been crazy heavy (thanks ITP), but this is becoming unsustainable. I had a transfusion at the beginning of the year when I ended up with a hemoglobin level of 6 after a very bad monthly bleed.

It seems that my counts are at a generally lower state than their previous stasis, and this is resulting in a vicious bleed/anemia cycle.

I'm not seeing any obvious easy choices on the hematological side, so I'm looking into the idea that I can manage the heavy periods on the gynecological side.

Does anyone have experience with the Mirena IUD for managing heavy bleeding? My gynecologist recommended that I look into it because the hormones released are more localized instead of the systemic hormonal effects with the pill. I'm not crazy about going in and mucking with my hormones at all, but I have to get my bleeding under control. I'm thinking if I can try the Mirena and that can reduce the uterine lining for less bleeding, then maybe I'll have more wiggle room to live life with lower counts and not have to manage things with TPO-RAs on the hematological side.

Thanks in advance for any been there done that stories, other recommendations, pointers to data, etc.

These forums have been such an incredibly rich resource for me so far, and it's only been one day!

Hi ...I posted this on the other forum but may be of use to others reading this. Have you considered tranexamic acid for the bleeding?

Hmm... I just did some searching on this because I'd never heard of it before. Is this something that would create problems is someone asplenic? Taking something with each cycle to reduce the intensity of the bleeding is exactly what my dream would be. I'll have to consult with my gynecologist and hematologist (I guess the gynecologist would be in charge of that) about counterindications and if that might be something to do going forward.

I have a hematologist appointment on Tuesday so I'm making a list of what to discuss and this topic is going on there. I am bringing hubby along since I'm a psycho on prednisone right now. My goal is to see if we can let me hang out for a few weeks with no treatment to establish a baseline. Then if I can't work things on the gyno side I am really liking the looks of Promacta for what to try next if I have to try something.

The Mirena thing may not work out like I was planning if my count tanks after this current bout with Pred. I'm sure they want a count of 50K to do the insertion, so I'll just see what Tuesday brings and make decisions from there.

Thanks for the suggestion. There is a treasure trove of knowledge on these forums in the old threads as well as ideas from current members. Best. find. ever!

Definitely worth investigating tranexamic acid.
I cannot comment on Promacta as it was a none starter for me with its dietary restrictions and my working varying shifts.
Have you thought about N plate?
I find it very suitable as only once a week and no tablets to swallow.
However I have to point out that over here in the UK we self inject whereas my understanding is that in the US patients have to go to a clinic for their treatment.

I am in the US so that would involve going in every week at the same time for a shot. I would definitely try that if we could administer it at home, but, with three kids, getting in once a week for labs is challenging enough. From what I'm reading I can wake up in the night and take the Promacta, so maybe that would lessen the dietary restriction burden somewhat with regards to timing. After this bout with Prednisone I'm ready to commit to any dietary restrictions I have to in avoidance of more steroids.

I really appreciate your helpful suggestions in navigating through my options. I'll give an update regarding what advice I get from the doctor about the TA for the periods.

Momto3boys
I am glad you found the forum and sorry you need to investigate treatment! You can read my journey on the 'old' posts. Pred is the worst! Also lost my mind and my ability to think or sleep. I am on promacta. It has been great for me. It started working about four days after I started. I set my vibrate alarm on my fitbit for 2am so I don't wake up my husband. Most of the time I wake up just before the alarm. I started at 50 mg a day and now take 12.5 mg and am trying to do that 5 days a week. We will see what happens. I wish I could have started with the promacta and skipped everything else they tried for the first 6 months. Oh well.
Hope you get some answers and less bleeding!
Hugs
Emily

Hi Emily,

In fact reading through your entire story was one of the best ways that I could get a good idea of what life on Promacta might be like, so I feel like I "know" you already. Thank you so much for putting yourself out there.

Luckily my husband sleeps like a log, so doing the middle of the night alarm will be no big deal if I end up going on Promacta. That's really what I'm leaning towards for maintenance if I can get it to work for me. I just can't get comfortable with the idea of Rituxin as a next step forward, so TPO-RAs are looking good.

Let's see what my appointment brings on Tuesday. I'm so happy to have read your success story and will follow along with all of your updates.

I am glad it was helpful. You can see how nuts I was on prednisone! Feel free to contact me privately any time. This site and the people on it are fantastic supports and full of information. You need to know everything you can as your medical team probably does not!

Momto3boys,

Are you done having children? If so you may look into "NovaSure endometrial ablation" www.novasure.com/patients is a website for information.

Good Luck, CindyAnn

Personally, I am not a fan of IUD's. I've heard too many horror stories. I know that doctor's claim they are safe, but doctors also deny the horrible side effects of Prednisone.

You might want to look at this:

www.mirenaside-effects.com/

I also love this website:

www.askapatient.com/viewrating.asp?drug=21225&name=MIRENA

CindyAnn,

I am done having children and my gynecologist said that I was eligible to do an ablation (she said I was at the youngest end of the age range she might recommend it for, but it is an option). I was very interested until I really got into the details of how things can go wrong if your birth control isn't perfect and you end up with implantation in the uterus after an ablation.

That idea of having to have perfect birth control afterwards because you have essentially burned out the uterine lining seems unrealistic to me. But as I'm seeing, there are definitely no perfect answers, and everything has some bad "worst case scenarios!"

I'll keep swimming around with all of the choices and see what I end up with Thanks for making sure I knew about ablation.

Thanks again Sandi,

Definitely no easy answers, ugh! I was thinking to avoid adding estrogen into the equation (and avoid the hassle of shopping around for birth control pills... I've never taken them) with the platelets by going the mirena route, but those side effects are yuck.

I've seen some mention on here of progesterone only birth control, I'm going to keep looking into that as well. Maybe that can help regulate my cycle some. Maybe I'll just jump in on the hematology side with Promacta and that will prevent me from having to mess around on the gyno side.

I'm waffling and wiffling and waffling and wiffling ... round and round I go

Thanks for the links!

The longer I have been around here (since 1998), the more I lean towards being as drug free as possible. I also base my thoughts on personal experience. I was diagnosed with ITP in 1998 and Lupus in 2006. I have tried more medications than you can possibly imagine, including chemo for Lupus. I have had much more damage from drugs than I have from the actual disorders. It has led to full disability and keeps getting worse. If I had it to do over again, I would do things much differently.

It seems to me that you need to get your counts up and control the bleeding. You can take something for the ITP and the bleeding, or you can just take one thing to get counts up and kill two birds with one stone. ITP and birth control are not a good mix for two reasons. One, messing with hormones can exacerbate autoimmune problems and two, ITP is known to be a clotting disorder as well as a bleeding disorder. Birth control raises the risk of clotting. You don't want to trade one problem for another. Sometimes I sound a bit like Chicken Little, but the risks are real.

I just had my appointment this afternoon (I'll post an update in my other thread), but going forward my doctor and I are planning on going for Promacta approval through the insurance. That is definitely going to be introducing another clotting consideration ball of wax so I'll be doing absolutely nothing new on the gyno side while I try to attack this thing with Promacta. I think you give great advice about limiting medications and I think it's easy to just want to throw a bunch of treatment at this condition to get it under better control, but doing too much "stuff" creates its own problems and complications.

I'm so sorry to hear about your condition and that it's not going in a good direction

I wish you all the best in your future endeavors and have really appreciated your rational voice as I'm jumping around making treatment decisions. It has really helped me to gain perspective, thank you!

I just read your other post. I was jumping up and down (inside my head, of course) because you went exactly in the direction that I had hoped (again, in my head). I hope it works out for you! Please keep us posted!

My gyno wants me to try the Mirena IUD next month. I told him I was worried about side effects and added hormones. I don't need BC anymore.Is the ablation common? He didn't even mention that.

So thankful for this site.

I know this is an old post but wondering if you tried Mirena? I've been on Promacta for years after trying everything else (steroids, nplate, chemo, everything). Promacta is the best. I'm not sure about the dietary restrictions y'all have talked about. I know if I took it in the morning with my bp meds, it was like I didn't take it and the doc didn't believe I did. But, now that I'm off now meds (thanks keto) I can take it whenever. I did have an ablation in about 2013 and it decreased bleeding for a while but back with a vengeance the past couple years. Doc says hysterectomy but too expensive and I'm 49 this month. Menopause has to be soon. So I had a Mirena Thursday. Bleeding like crazy ever since.