Its been a while.

Oh how I've missed you.
After getting a part time job (sort of) with the school and a computer crash I have found my way back.
Unfortunately not any really good news to share on the ITP front. Its still there, I still have it, its most likely not going into remission.
Last count 1-2 weeks ago was 10k. Been off pred. for at least a month. Hemo had decided I was to be "watched". He called this morning and told me that my options basically were pred for even longer (had been on it for over a year) or splenectomy. He will not try other options before I have the surgery.
So we've come full circle and Im still being pushed to get the surgery.
I know there are pages and pages full of wisdom on this site but I would love for someone to be able to tell me what I should do at this point.
Oh well. To each his own, I know.
I was told today by a woman that works in the school she has an auto-immune disorder where her body is no longer producing T or B cells. Anybody know what that could be?

Happy Wednesday all!

My advice is simple. Get another opinion. You should have all options available to you, not just the limited ones that the hemo decides upon.

I agree with Sandi.

How long ago were you diagnosed? What were your prednisone doses? Do you know how much experience your doctor has with ITP?

Another agreement....it is second opinion time.
You are only being offered the choice of a treatment dating from the 1920's (splenectomy) or one from the 1950's (Prednisone). It is 2013 and there are more options available.
.

Hi Sandi! Karen! Jack!

I would LOVE another opinion. Unfortunately for my area I am running out of hemos, how about that. They should really keep a better stock of those things. This one is my second already.
Called another one yesterday and as usual they didnt call back. Will try again.

I was diagnosed Jan 6th of 2012. My pred started at 160 mg. a day varying down to 80 mg. a day Karen.
Boy did all the creaks and aches come back after I was off that stuff for like two weeks. Yuck. And no I dont know how much experience he has with non cancer related chronic ITP. I have asked and his response was he saw a bit of it during his schooling. Not much help.

I like the way you put it Jack. I wonder if he'll drop me or dismiss it if I told him like that. They dont seem to like hearing how antiquated their way of thinking is.

Almost 3 a.m. here in no man's land Tx.
Going to hit the hay.

Thanks y'all for giving me the push I need to not give in!

Hi, I agree with all that advise given but as you are so short of good hems why not try a different and gentle approach, perhaps the hemos might just listen ?
Just say that the steroids were so horrible and you would like to try a non steroid approach such as using one of those
Immunosuppressants such as azathioprine,or because it has less fewer side effects mycophenolate morfetil (MFF),perhaps CellCept or the cheaper generics form. If the hemo will not accept that contribution from you then no other response seems possible. Worth trying just to see how up to date your hemo is. Very good luck ,most of us have come across such medics I'm afraid in what should be a patient/doctor relationship for the benefit of the patient.

I know how that goes....I was running out of Rheumatologists in my area and had to keep going farther and farther. If I'd kept going, I'd be seeing one in another state.

Sometimes you just have to make suggestions if you can. I was my Hemo's first ITP patient to try Rituxan in 2002 or 2003. He thought you had to have had the spleen removed first to use Rituxan and I dispelled that rumor.

It's great that he saw ITP during his schooling and if that was in the past 8 years, then great. If not, Yikes!

5 a.m. I guess its get scared time.
Three days ago I yawned and heard a crack in the side of my jaw. The next day I was dizzy for a bit. The day after that I woke up with blood coming out of my ear on the same side as the jaw crack. Related?
An hour ago I woke up with a bloody nose. Not new but a surprise just the same.
I get that second opinion in 3-4 more days. Actually I'll get that second opinion the day before I see my current hemo lol. No pressure.
I am anxious and scared. The blood coming out of my ear and the nose bleed from nowhere are the worst I've seen of me in a while.

I will mention the non-steroid approaches to both hemos. It'll be interesting and good to compare their information, approach and skills so closely.

Here's to hope!

Is it possible to see another doctor before that? Maybe an Urgent Care type setting?

I did see my general doctor yesterday about the blood in ear and other reasons. He said my inner ear(s) looked good and he could not find a source for the bleeding but he said there was fluid around the side of my jaw that made that crack sound and to see my dentist.
Can a hemo order an mri or ct-scan of my head? I think there is something wrong in it. Fear talking?
Got a couple of winks in since last post and woke up with my head sweating. Under a fan.
Sinus related maybe? Head still hurts but thats not uncommon with west texas wind blowing the way it does and its been blowing for two days.
Got side tracked sorry.
I really want to avoid the ER but thats the only urgent care on the weekends. Guess I'll put myself back on pred 'til I go see the hemos?

Morning Sandi! Morning All!

Good morning to you!

A hemo can order an MRI or CT scan, but he might just tell you to see your GP. Depends on what he wants to get involved with.

I could click on that thank you button but I prefer to say it myself.
Thanks Sandi.
I really appreciate the insight,advice and voice of reason you and the others here provide.

I was diagnosed in 1982. Had a splenectomy in 1983 and was in remission until 1987. In 1987, used vincristine, cytoxan, danocrine and of course the all time favorite prednisone.

I came out of remission a few times but life has basically been good.

My most prevalent symptom has always involved GI pain and bleeds. I rarely have much bruising but l always have stomach pain and or lower and upper gastrointestinal bleeding.

Bob

J darlin , I am in a very similar place as you! I was diagnosed on dec 28, 2012. I have tried IVGs, Rituxin, Nplate and prednisone
Unfortunately nothing has kept my platelet count thus far even though i have had a few decent counts. unfortunately the doctor tried so many things at one time that i dont know what works.The hematologist basically scheduled my consultation for a splenectomy without my approval about a month ago. I was terrified and was not ready for that. I went into a depression/ denial phase for a few weeks. After having many long discussions with my bf and parents and many great words of wisdom I am going to a specialist at Cleveland clinic next week. He may recommend a splenectomy as well, but I want to make sure that is really the only option before going through with it. I would get a 2nd opinion as well!

I'm glad you're getting another opinion. It boggles my mind that any doctor would schedule a surgical consult without a patient's approval. It's a choice, not a necessity. It should be scheduled when you are ready and not a minute before then.

The surgeon can only tell you what he has observed; that upon his observation, counts sometimes rise after the surgery. He cannot tell you whether or not the patient maintains the higher counts. He does not follow up more than a few weeks.

Do not let this depress you. Splenectomy is quite often suggested.