advice please

Let me start by saying that I know the customary answers....No one can decide but me.....everyone is different. I know all that, I really am only looking for opinions and thoughts.
I'm currently on 50mg of Promacta daily. It's driving me crazy! Not the medicine itself, like side effects or anything. It's my counts. I can't take it any longer! I know...don't worry about the numbers, only consider the symptoms, but still....I HATE the ups and downs. I thought the Promacta was only supposed to keep my numbers in the 50 range. 2 weeks ago on 25 mg a day I was at 59, the doc said up the dose to 50mg and today I'm at 252! Oh, I know....what a great number, I'm not knocking that. Even happy with it. But I still have the fatigue, and even some new bruises in the past couple of days, all that with my numbers going up! I've had enough! I think some of my problem is with the long term side effects of the Promacta. I don't want liver problems and vision problems. I don't want ITP anymore! I feel like an idiot. I'm 47 years old and acting like a whiny kid. Sigh....
I suppose I should discuss all this with my doctor right? But, is there anything else I should be asking him? Is there something I'm missing with this silliness? Are there other tests I should be pushing for? Should I insist on keeping my Promacta at 25mg? I just don't know, I feel like I don't know anything anymore!
Thanks in advance for any of you bold enough to put up with this post and actually respond!

Counts are sometimes the only tangible thing we can see with this disorder! I seemed to live from CBC to CBC and thought the "next" one would be the one that would show I was getting better and life could return to some semblance of normal.

As a believer you might consider talking and sharing with a trusted spiritual friend? During some stressful times it was only my faith friends and Stephen Minister Care Giver that kept me sane (and some would debate that :laugh: Many areas have a "Stephen Ministry" for congregation and community care - you don't need to be a member of their congregation. The denomination isn't significant as it's a Christian based Ministry. Lay people, just like you and me, are Stephen Ministry Care Givers whose only goal is to listen and model Christ's love and care. It's a wonderful ministry that provides someone to talk with on a weekly basis and it's very CONFIDENTIAL! you can find info at www.stephenministries.org

Praying for you!

Gretchen:

I don't have the exact same problem that you do (at the moment), but I do understand the "sick of it" thing. The side effects, the fatigue, the endless appointments and blood work....

We're about the same age and dealing with similar issues. I wish I had answers. There is no end to this for me and I know that. All I can offer you is that when you least expect it, ITP can go into remission. It really can. Until that time, hang in there. If it doesn't, you will get used to it. I know it's not something that you WANT to get used to, but there might not be a choice.

Have you ever had any simple labs, like thyroid, B-12 and ANA for starters?

Gretchen, you are definatly not alone with the "sick of it" issue. The ups and down I experienced with Rituxin was so frustrating!! I am currently riding on my second round of Rituxin 20 months. The Dr. said the next course of treatment would be Promacta. Not looking foward to it but I guess if my Platelets drop again I will not have much choice. I have had other levels checked and they are normal but I still run out of energy so quick. My last count was 160k which is down from 350k a few months ago. I started to forget that I have ITP but now with the counts droping it is on my mind again.
One other issue is that I always feel so bloated after I eat, never used to. Wondering if it is from Rituxin? These treatments affect us all differently and the long term side effects can be discouraging. Understand your frustration.
As Sandi mentioned, may want to suggest checking other levels.
Praying for you.

Gretchen,
Really understand what your saying here, please don't feel bad, you are only saying what most of us think. You really do get over doctors, blood tests, and all the stuff that goes with this silly condition.

I think one of the hardest things to deal with is there is no one answer and it is frustrating, what works for one person may not work for another and it may not even work next time. The drugs we all take are terrible with awful side effects and there is no getting around that.
You don't sound like a whiney kid, you sound the same as me and the truth be known others here as well. You, like me just want your life back, and it's not that we don't have a life it is just we don't have the life free from Doctors and meds and tests and worrying what our counts are.
I know what it's like I don't even tell my friends if I am going to the doctors anymore, most people have a hard time believing that there is a problem that I have that isn't making me look sick, not killing me but requires constant medical attention.

I am 50 and up until all this never went to doctor apart from annual pap smears, now feel like I should just move in with my doctor or doctors I should say, never had so may tologist's in my life.

I am going to suggest maybe a hormonal test, are you going through menopause I know that made me feel pretty crappy.

The loneliness of this thing is terrible, unless you have it you don't understand how it feels, maybe you just need to talk to someone like Steve suggested.
Please feel free to email me if you need someone just to talk to.

You said it already, everyone is different. Consider the how it could be; Promacta might have done absolutely nothing, or you could be stuck in the 40k-50k range for a year and a half (as with my own Promacta experience).
You probably still have the fatigue because Promacta increases platelet production, but does not affect platelet destruction....the war inside you rages on. IMO, the war is worsened because we now have more platelets being created and destroyed at any given time. It wears you right out.
I hear you about being weary of ITP in general though....and it's only my eighth year overall.
.

thank you all for your replies. This place is a safe place for me.
Steve, thank you for the link, I will check it out right after this post! You know, I know in my heart that I have already recieved my healing because of Jesus and His gift, but living in that healing everyday is sometimes over-whelming.
Sandi, I've had my thryroid checked recently. Not sure about the other tests. I get the usual CBC and once in awhile a Comprehesive and Chemistry. Don't know what that means exactly! What would the ANA test be looking for? I remember when I had my bone marrow test done he said that I had Lupus Anti-coagulant. That means something about clotting though right? Oh boy...I guess it's time to start researching again! Something to do, maybe it will take me mind off "things".
I am going to a neurologist later this month for the numbness and tingling in my legs and feet. Maybe knowing what's going on there will help too.
Again, thank you all for your posts and prayers.

Gretchen - you have the Lupus Anticoagulant? I think that is a blood test, not a diagnosed with the BMB. But anyway, check on that because that can certainly have an impact on things.

Good start with the neurologist and yes, it might be a good idea to have an ANA. It looks for inflammation and can be a diagnostic factor with Lupus.

I totally know how you feel. I just went yesterday for a CBC and have dropped from 144 down to 134 over the last month... good counts for the most part, BUT I was actually hoping they would be worse... not because I want my counts to be low but because I have been feeling so tired, fatigued and achy that it would only make sense if my counts were lower. It's like I don't really have a problem if my counts are at a decent range and have no reason to feel bad.... VERY FRUSTRATING!!!!!

I was actually hoping they would be worse... not because I want my counts to be low but because I have been feeling so tired, fatigued and achy that it would only make sense if my counts were lower.

Exactly, you understand!

Sandi, which doctor would do the ANA test? I'm starting to get angry with this all. Maybe that's where I need to be? Do I need to start demanding (in a polite way!) to get more tests cuz something just isn't right!

In a word: yes! You have other symptoms going on that are not attributable to ITP. Sometimes the things we think are ITP or side effects of meds are not. Sometimes they are, but you need to be sure.

Any doctor can do the ANA. It's mostly a Rheumatology thing, but any doctor can order it.

You are in the safe range! And that in itself is wonderful.
My platelets have been 13, 13, 15 for the past 3 weeks. I am a candidate for promacta. I should get the go-ahead any day now to pick it up at the pharmacy. Right now a count of 50 would make me VERY happy : )

Hang it there! Things are going well for you : )