TOPIC:

Yes Ma'am they are and Im so tired of all of it.
Especially of it not making sense.
Called my hemo this morning to correct the gyn and he had previously told me the bleeding was not due to the ITP, today he said it could be. Make up your mind guy!! Oh yeah and his staff has already spoken to the surgeon and started scheduling the splenectomy for me. Without talking to me first!! They are driving me batty.
I talked to another hemo today and she said get splenectomy and it will solve my bleeding problem. I so do not want that.
My way of thinking tells me that if I were bleeding because of ITP I would have stopped when my counts were high and I didnt.
If I get the splenectomy and it doesnt work and I am still bleeding I am going to be beyond livid.
The gyn I saw the other day who only has 1 yr. of experience at being a gyn gave me megestrol to stop the bleeding as she thinks Im preparing for surgery.
Has anyone here been put on that?
I go to a gd tomorrow to get this sinus infection cleared up. Any antibiotics I need to steer clear of?

Oh and Sandi I wish I could bring you to meet my hemo and gyn.
I bet then they would get off their hands and do something helpful.
Im so tired of the run around.

A lot of the decisions are personal choices but I would be asking for them to try a little harder to find a reason. What if it is endometriosis? I had that and the only way to dx it is for them to do a small surgery and have a look, two very small incisions and they can see is you have it.
I absolutely have no problem with the choice to remove a person spleen if that is what they want, sometimes it seems to work sometimes not but I would want more guarantee that this is what is causing your problem and I would not back down from a doctor that could not explain to me why I was still bleeding when counts are high, that was one of the things that I was so happy with my doctors decision when he said that if your counts are ok you cannot blaim the itp for the bleeding, people with ITP get other medical problems that are in no way related to ITP.
I understand how hard it is sometimes to stand your ground with these doctors but you cannot put your spleen back if they are wrong.

Exactly.

I wish I could come with you because they are making me mad! There is no guarantee that a splenectomy will work in the first place, so how could they tell you for sure that would stop the problem?

If you have bleeding at higher counts, ITP is not the problem. I know that you know that. Grrr.

I think they say that because they dont know what else to say. Like when they blame it all on size. If it werent for the ITP it would be because Im fat. Oh wait, I bet thats it! I got ITP because Im fat. Im bleeding because Im fat. Or maybe because I turned 30? Twenty nine years and never a problem but the big 3-0 hits and down that hill I go head first.

I started thinking about what I've been told, who said it and what they've done. Today I called the gyn I was referred to to discuss what her options would be for me and she is the first of the three to say she wanted to find the real reason I've been bleeding for so long. She did not blame it on ITP. She is also the first to listen to what I've said since all this started and take a more aggressive starting approach to try to get the bleeding to stop.
Why on earth has the gyn I've been using not tried harder or actually done something besides shove bc at me when it doesnt work, I've been seeing him since February 2nd. The more I thought the more mad I got so Im dropping him and I'll see what this new one wants to do after she gets my records and can review them.
I have spoken with two other hemotologists that are suppose to be very good according to my grandmother. One said try rituxan before I go to surgery option the other said surgery. The one I've been seeing since January 10th I feel is iffy. I've been there every week to get poked and listen to him give me his I dont know why and we'll try this next but he doesnt know who I am, where Im from, what I do nor is he conciously aware that Im still bleeding. I have to tell him every visit. He sounds very robotic when he reads me my results which I can read myself by now. The last visit he had to ask his nurse what we should do. His nurse scares me, any mention of surgery around her and her eyes get big and light up like a kid at Christmas but dont count on her returning a call. His scheduler who is a cross between Mimi Bobeck from the Drew Carey show and Droopy Dog moves me around at her leisure without checking with me first drives me batty. Im just not real fond of him or his staff lol.
Thanks for letting me vent!
This is my plan (not theirs):
get the bleeding to stop--most important to me nearing 100 days here.
get ivig
get bone marrow test (is it worth it? what does it tell?)
go from there.
fewer visits, less poking, no surgery and no bleeding are my goals.
Im only into 2 1/2 months of treatments. Just need to remember that when I see these docs. I have a backbone...somewhere.

And I bleed equally at 398 count or 28 count.
I do not think its the itp. I think I developed itp because of the bleeding.

Looking forward to getting out and going to Rattlesnake Round-Up tomorrow.
I hope everyone here has a fabulous weekend!!

had ivig tuesday and wednesday.
plates came up to 206
hemo says that since i responded i have a good chance with the splenectomy.
he said that other treatments like rituxan and nplate are more for people who would not respond well to splenectomy.
he said they arent long term fixes.
???

Wrong. There is no correlation between a response to IVIG and splenectomy success. That used to be the thinking many years ago, but not any more!

Many people have Rituxan prior to splenectomy to save the spleen. I did.

Nothing is a long-term fix.

I'm glad your counts are up for now!

Will they more than likely fall?
And still bleeding so I guess I am going to take a break from the hemo for a while and see what the gyn can do.
Cant rituxan put itp into remission for some? Im not saying it would or wouldnt for me but maybe for some?
Does anyone ever spontaneously go into remission w/o treatment of any kind?
Maybe I'll see the other hemo too, the one that suggested rituxan before splenectomy.
Dread the thought of having to start all over...

Rituxan kills off certain white cells and they come back after 9 months or so and sometimes the ITP comes straight back and other times it doesn't. I don't know the percentages for each but we've seen both happen here.

My haematologist said that often ITP seems to burn itself out after a while, so yes, a spontaneous remission is very possible and that's what makes it all so confusing and why people who take odd things for it then believe that the thing they took was responsible. The same happens with medication of course. Friend of mine was waiting for Nplate to be generally available in the UK but by the time it was available she had gone into a spontaneous remission. Had she had Nplate first then everyone would have put the remission down to the drug when in fact it was going to happen anyway. We all take steroids first off and I do wonder whether it's the steroids that put a few people into remission or whether they had acute ITP and waiting would have worked just as well.

Sorry for waffling.. I think too much about things.

Keep thinking out loud if you please!
I do wonder if just waiting would be ok. I dont know my counts are down until they tell me and I feel no different up or down.
Was as low as 11 once but even thats not as low as most here and have been 28 (while sick) to 47 not sick or on any meds so why take something for it when its not hurting? I dont bruise, I dont bleed besides the defective female part. Dont borrow trouble right?

Would be handy to have a reader thing at home like for diabetics so we wouldnt have to go weekly to be poked I guess.

Hi, I'm kind of late to the discussion, but I've been dealing with bleeding problems since I was diagnosed in 2010. I had an abnormally heavy period a couple of months before I was diagnosed, then when I was put on pred it completely stopped for a few months. Ever since then it has alternated between non-stop for a few months to nothing at all for a few months, then back on, etc. I was on mostly high doses of pred for about 8 months which kept my counts in the safe zone, so my hema did not attribute the bleeding to itp and sent me to gyno. After doing all of the tests necessary to rule things out she recommended ablation. Said it was just unexplained hormonal imbalance. I was in the hospital a couple of time that year so I decided not to do anything about it, didn't want anymore procedures. I did have a splenectomy which put me in remission from itp. Two years later, the bleeding has been mostly an annoyance, but I'm still debating what to do. I'm of the opinion that the pred caused hormonal chaos and my body has not recovered. Dr. Says that may be, but doesn't matter the cause now, just need to decide to live with it or not. She has to redo the tests every year to make sure, it is still safe to do nothing. Also, my platelets have slowly dropped since my splenectomy, and seem to hover around 80-120.

Finally!!
Just got a call for a pre-op appt. with the gyn for Monday to get the ablation done next week and I also got a call from the other hemo's nurse for an appt. here next week! No more travel to get stabbed, no more careless hemo and his staff! I can get stabbed and deal with careless medical people here lol. That does actually make a difference to me.

Here's to new hemo, may he bring lots of options and personal attention to my case. Here's to the wonderfully attentive nurse in the gyn's office who got back from vacation, may she be good luck and the ablation stop the bleeding for good!
Please let me be one of those lucky 50% who stop bleeding permanently.

Good for you! Persistence has paid off. Good luck girl!

Good luck for Monday and I sur do hope you are one of the 50% your life will be so different.

I will be curious to hear how the ablation goes. Best of luck!

Monday went well with gyn. Plates were at 188 then so ablation is a go for Friday.
Saw new hemo today. He is great! I didnt even have to get poked since I had on Monday.
He actually sat down and asked me what I thought about the splenectomy, my history, when all this started, what I'd been through, etc.
It was nice having an actual conversation instead of being talked at. He said to come back next month. Not even next week or the next but in a month! Love it.
Will update after the ablation.
Thanks for all the well wishes and luck!!

Ok, they've found a great way to torture women.
Endometrial ablation is top on my list for torture!
Felt like a hot fire poker had been jabbed in my middle and left there the whole day.
One more painful (the most painful) step to hysterectomy imo.
Wont know if it worked for a couple of weeks. Unfortunately I am doubtful.

See new hemo again next week, cant wait to see if the platelets have tanked.

Yeah some things are very close to torture, I hope you feel better now. When I had the uterine embolization done there where time that a quick death would have been ok, never had so much pain in all my life, worked really well but the pain was horrific.

Thanks Milly. I do feel better.
What exactly is uterine embolization?

New hemo's nurse called with cbc results from yesterday. Platelets have tanked to 19 from 188 the Monday before the surgery. She said, "that puts you at risk for bleeding." Really? I did not know that. ;P Im sure they went down because of the surgery. Anyway he wants me back on prednisone and to go to the center I was going to before I found out he came here. Yay (full of sarcasm). Kind of awkward going to the place where the other hemo is but to see the new hemo. Oh well.
I sure wish it was one or the other to deal with not both at the same time. Like can I put the bleeding on hold for a month to work with the ITP then switch? lol.

The embolization is a treatment for fibroids and the put a tube in an artery in your leg and the inject really tiny plastic fragments that target the fibroids and it destroys them, most painful two weeks I have ever had, but it worked and I have not had a period or any bleeding since then (about 18 months now), so it was worth it.
I hope you have the same success from your treatment and strangely enough every time I have had surgery my platelet number have gone up not down.

Good luck, have they tried anything other then prednisone?

holy smokes that makes me hurt! No thanks, you can keep it. You must be very strong to go through something like that.
so do you think maybe it wasnt the surgery that made my counts go down so fast?
nothing else has gone on that I can think of that would have made them drop like that. the bleeding has gotten a little heavier but I think my body is trying to have a period. It would be time for it unfortunately.

I've done three trials of prednisone (160mg a day (counts went up to 398 from 28), 80mg a day (counts went up to 205 from 33) and 40 mg a day (counts went up to 90 from 47) decreasing counts with all tapers), 16 vials of iron by iv, three dexamethasone iv treatments (no change in counts) and then the two doses of ivig which were around 9 bottles of various sizes each dose (counts went up to 205 as of a week later). Nothing else but maybe this new hemo will think of something?

Gyn wise it was three different birth control pills, depo shot and now the ablation.
On the plus side I think having to keep up with everything is improving my memory!

You know thinking about it other than the prednisone the bleeding had gotten heavier after every treatment I've had. I wonder if its just the stress of it?

Could be the surgery, we are all different. I had three lots of surgery after being dx with ITP and this was the only time my counts hit the 200's, the highest being 278 after that particular surgery, normal for me seems to be low 100's and that is great but we are all different so it could be the surgery..
This is ONLY me, but if I was getting a short rise in counts by steroids I would be looking for something that would last longer, I am sure there will be others with a different opinion so again this is just me.

This whole thing can be so annoying. I really hope you find an answer soon. Hey and don't panic about the embolization thing the plastic things are microscopic but they still hurt.

Went to new hemo. Counts are up to 97 from 19 over three days on 60mg of prednisone. He was kind of taken back because he had wanted me to take 160mg a day not the small dose I took.
He wants me on 80mg for the week and a new cbc on Friday.
He said surgery really needs to be the last option but he said I cant stay on prednisone for long and I cant get ivig on a regular basis. I dont really know where he is going with saying that.

Can itp be put into remission just with prednisone?

Is it always wise to follow what the doc says instead of what we think for ourselves?

How can I tell the hemo in a nice serious way that I do not want splenectomy or serious treatments unless really necessary or in case of emergency. That I only want to be checked about once a month and if the occassional dose of prednisone works then thats what I'd want to stick with?
Or am I way off here and have not fully grasped the situation?

Since it is different for everyone how do I know how serious or critical it is for me or when I really should worry?
If you could give me some words of wisdom on how to get the hemos to back off a bit I'd really appreciate that too.

The usual dose for prednisone is 1mg per kg of body weight. I don't know what country you're in and if you use kg or pounds but one kg is 2.2 pounds. As you go on you'll get to know what works for you. After a while I would only take 15mg as I knew that would work for me. I only took that after I'd tried much else and was waiting to start Nplate. I wouldn't want to use pred as a regular treatment. There are other things to try.

Prednisone can induce a remission but it is rare.

Critical is when you're bleeding and it won't stop or you're coughing up blood or peeing blood or something similar. Time to treat but not time to panic, is when you have blood blisters in the mouth which they call wet purpura and nose bleeds.

Then I hope the ablation works and I stop bleeding in the next week or so. How beautiful a thought is that, to stop bleeding after like 120 days lol.

I think Im really leaning towards watching and waiting. Unless there is another treatment to try that doesnt require me losing an entire day or more for it which all other treatments have proven to take.
Im ok with taking a pill every day as long as the side effects arent life threatening, long lasting or worse than what the pill is suppose to be treating.

Thanks to all for keeping up with me.

I am one of the rare ones that prednisone did give me a remission, I have had normal counts now for 15 months but I took pred for 10 or 11 months.
Happy you are doing better.

Congrats on normal counts Milly!!

Hey guess what, Im not bleeding anymore.
Well except the out of nowhere nose bleed earlier today.
Lasted less than 2 minutes but it was a lot.
Trying to taper myself off of prednisone. Been on it for three weeks. Last count was at 31k so I thought I could get off of it. Hemo wants me on it until I see him next week. His nurse mentioned Rituxan and I said no. I really dont want to spend my time on short term to may not work fixes. I really dont want to be on prednisone anymore either.
If itp came after the three month long menorrhagia and the bleeding has been stopped with the ablation then will the itp burn out on its own given more time?
Why do I get extreme highs and lows on prednisone but not a consistent medium?
Why is my hair falling out?
Why does the hemo say I cant stay on prednisone for long but still wants me on it?
What comes after Rituxan or in place of when refused?
Are there any other meds to try that are in pill form?
Why have they not checked for anything else like possible infection?
Or if they have why have they not told me that?
Do they examine your spleen before they want it out?
Does your opinion matter to your hemo or do you get brushed off?


Just running through questions...again.
At least Im not bleeding anymore and Im glad the nose bleed didnt last long.

Coming back and realizing how ridiculous some of those questions are can I ask just a couple more?

What is a "normal" count for you and how do you maintain it?