Girlfriend diagnosed with ITP Also Has H.Pillory

So I thought it's time for an update, mainly because today my Wife (no longer GF hehe) had a blood test and platelets are down to 45K where they used to hover at around 70-90,
No stress, but we are going to increase blood test interval (or rather decrease).

Also I wanted to update that she no longer has H.Pillori, and it didn't really help with her ITP, on the contrary, it messed up her body in regards to female stuff.. she has to to Pro-Biotics a lot now.

Hi desafina,

I was following your posts and just wanted to say congratulations on your wedding!! A couple of the people who responded to your former posts--I don't think they are any longer on the forum. I just wanted to say that even though you are worried, your wife's platelets are still very safe. Sometimes this does happen (not sure why--but I've heard of others who have had this happen). Is she taking any medication? I would just keep an eye on her CBC to see if they go lower. Most people with ITP like your wife usually stay in the safer range (they don't crash like some of us).

Good luck to both of you and please do keep us informed.

Dee Dee

Hey Dee Dee!

It's quite interesting that 2 people have had their user disabled / unavailable!
Wife started working at a hospital as a dietitian, and so she had to get around 4 shots..
Among them, a flu shot. So it might very well be that the shots got her numbers down.

I just hope they will go back to around 70-80 where we got pretty comfortable with the idea of ITP. Also 40K~ I don't if it's a good number to get pregnant...

We will just have to wait and see.

Thanks for replying!

Hi Desafina:

I would think that the shots most likely brought her platelets down. Mine definitely
go down with the flu shots (and other shots). The last time I had a series of shots,
they did go back up within a few days (but I had been on Decadron before the shots).

Has she been tested since after having the shots? I would talk to her Hemotologist
about getting pregnant; I would think that she should still be fine. I have been on the
forums for a while (both this one and the one before this) and I have heard that Pregnancy
can cause the platelets to go up and down. I do think that the women who have the most
problems are those who started out with normal platelets and the pregnancy brought on the
ITP. Try and ask Sandy about this as I think that she started out with ITP during her last
pregnancy. Start a new thread and Sandy will respond to you.

Since your wife is a dietitian, she knows how to eat healthy and this should help her quite a bit. Eating healthy is very important! She should be fine during pregnancy and this is something you both want.

There use to be so many women with ITP while pregnant, but they are no longer writing on the forum.

Good luck to you and your wife!

Dee Dee

Hey again Marie,

The CBC she got was a bit after the shots. By pure coincidence she works @ the same hospital her hematologist is. So she goes in the morning to give blood, and comes back at lunch time to see results and talk to him He is also a nice guy, I have him in Whatsapp, I think in 1 year iv'e sent him 2 messages. I try not to overuse this communication line so he will not get used to ignoring me

Anyhow, he scheduled another CBC next week so we are keeping track of what's going on.
As for eating healthy, that's quite hard for both of us. We both try to eat healthy but schedule and time and money is a really big problem.

My wife works 3 different jobs because being a dietitian is really hard here. If you want to work for medical companies you have to have 1 year of experience from a hospital, but hospitals only give 33% of a job position and pay minimum wage. So she also works at a place where women come to exercise but not like a gym. So they also offer dietitian services (for extra cost), and that also pays very little. Also, she works from home for some website as a source of info for students as she just finished her studies with excellence.

Long story short, she wakes up at 06:30 AM, and usually comes back home at 20:00... tired, sometimes moody. I do my best to relax her, and help around home, but I also work a lot. So we don't have time for proper food. We try, but it's hard.

I keep telling her that she should ditch one job, and we will lay back on expenses because I think she need to sleep more, and relax more. But she doesn't want to. All three of her jobs together earn her like 1500$.

I hate living in Israel. (Sorry offtopic but my emotions are getting the better side of me...)

I agree with you. She definitely needs to get more rest, especially if you want to have a baby.
The last time I had my platelets go down and I was seeing my hematologist quite a bit, he did mention that most of his patients that couldn't get their platelets to stay up had a lot of stress from their job. I know it's a struggle when you are young and trying to work and start a family.

Is you wife planning on working after having a baby? This would make a big difference. If she just kept the job at the hospital, that wouldn't be too bad. Then she could get her one year in.

I personally believe that rest is really important for people who have ITP. And lowering your stress level helps to. It may not be possible at this time in your life, but hopefully you can get to that point.

I would talk to your Hemo when you get a chance (maybe after you get the CBC results). And maybe your wife should do some research on ITP so she understands it a little better. This is how I changed my outlook on TIP; I do make sure I get my rest. But, I went through the same things your wife is going through in my working career

Yeah, She should start reading about ITP, she just left it to me because when she just got diagnosed with it she was really stressed and didn't want to read on the net.
So I did all the reading. Her Hemo told her when she got the last 45K count that below 30K she needs to get treated. After reading here so much, My conclusion was that treating should be decided based on Count, symptoms, feeling and risk.

I wouldn't treat at even 20K if she feels well and doesn't bleed anywhere.
Maybe i'll make up a list of articles and threads I think she needs to read. Starting with your last post here

It's a good thing that you have been doing your research and now know a lot about ITP. I agree with you on treating. I definitely wouldn't treat unless I was under 20. If you've read other posts, we have Jack on the form who is perfectly happy and does well with his platelets at 15-20. His insurance doesn't cover certain meds so he takes celcept (something like this--his forum name is WeirdJack--you can look it up).

I, myself, am happy with platelets even at 10,000. When I come out of remission, my platelets seem to go all the way to 1; I can be a very difficult case. I recently had rotator cuff surgery and my platelets had gone down about 40,000 within 4 days before the surgery. I am going to get them checked again in another week. I take the Decadron pulses and IVIG. Other than that, I don't know if I will agree to a lot of the harsher treatments. One of the top doctors from the ITP conference told me not to take NPlate or Promacta as my family has a history of serious blood disorders. I will always remember his advice. Of course, this only pertain to me and with people with blood disorder. I'm of Italian decent--and blood disorders are more prevalent in this area (at least that's what I've read).

I do well with low platelets after about 1 1/2 weeks. I watch what I eat (the forum has a food list that you can follow to help minimize your symptoms). This is what I did last time (3 1/2 years ago--second time). And, by staying informed and checking in from time to time on this forum, you can see what others are going through. This keeps you from panicking when you have a relapse.

I think your wife will be fine--but it is really thoughtful and smart of you to keep informed!

Good luck!

After reading here so much, My conclusion was that treating should be decided based on Count, symptoms, feeling and risk.

I think you've got it! As long as symptoms are managed, it's all good.

we have Jack on the forum who is perfectly happy and does well with his platelets at 15-20. His insurance doesn't cover certain meds so he takes celcept

Hey, I resemble that!
My insurance does cover Promacta, they simply (and reasonably) require that I pay a $4,500 max-out-of-pocket co-pay up front every year. I refuse to do that.
There are a lot of other things my wife and I can do with $4,500...so I CHOOSE to take generic Cellcept at $10 a month co-pay.
For me, there is not much difference between Promacta's 40k-50k range and Cellcept's 12k-20k range. I'm safe on both, symptoms are fine on both, BUT the $4380 a year savings DOES matter to me.
Everyone has to find their own safe level and comfort zone though. ITP is quirky!

Life continues.

Thank you for the info Jack, We have not had to deal with ANY drugs/meds yet because number were never lower then 45K. But she bruises very easily so it's a constant reminder of the existence of ITP.

Jack,
I agree with you. I would much rather spend the money in other ways than on medication that
isn't doing a lot of difference Plus, for me it won't be an option since I was told not to take NPlate or Promacta (by one of the speaker at the IPT conference).

Now, I just had this rotator cuff surgery and wonder if I made the right decision! You can't hardly do anything for six months (including lifting, holding, etc.) And there is no guarantee that you will be completely better; And, you still have a Lot of pain! Of course they told me after the surgery!

Sorry for venting--just get upset with doctors!

Dee Dee

Marie,

Vent-away! I didn't even know what a rotator cuff is until I just googled it...
Sounds like a harsh treatment, but I don't know anything about it so can't offer any wisdom.

If on the other hand you want to buy a smartphone, I can recommend the best one

Cheers!