I am not a Happy Camper!

Good Evening All!

I have not done a good job keeping my questions and such in a central spot. I will try to rememdy that now.

I had a follow up visit with my Hema/Onco today. I have been on prednisone for 2 months. I was only up 4k in platelets to 40k. It sucks! And I am mad! I dont know who or why or what to be mad at but I am mad! LOL I gained about 40# in that time frame for 4k platelets. That my friends is not a good deal!

Now for my questions, for I am scared now. Real scared.

My white differential was up some, Gran# was up and a little our of range. Is this common as a prednisone side effect. My doc did not seem too concerned. Same for my white count at 11.7. Any thoughts here also would be appreciated.

My doc is scheduling me for a colonoscopy, I have never had one and I am 59 (bad me!). He is going to give me IVIG before the procedure. Is there anything that I need to know here?

It appears that I am going to be on the prednisone indefinately. I am not happy about this at all. Has anyone be able to lose weight on this med?

In short I am scared, not happy, and I don't really seem to have a direction. I realize that it is probably because I cannot control it. I know my doc is doing the right stuff. Diagnosis by elimination. But knowing all this still does not help.

Thanks for reading my rant, and if you have any information, thoughts, or experience that you would share I would be forever appreciative.

Jeffrey
AKA Cold in Indiana!

Jeffrey, do you have bleeding symptoms? I am not sure why your hema is keeping you on a steady dose of pred if your platelets haven't reasoned by now (I'm assuming they haven't though it is hard to tell from your posts. I think that you have not mentioned a count lower than 20k and haven't mentioned symptoms. Talk to your doc about getting off the pred if that's the case. It is wicked and could do lasting harm if taken for too long. For some people it's necessary, but perhaps you are not one of them. Have you thought about getting a second opinion?

Tamar,

I have not had a bleeding issue. My low count was discovered on a routine physical. I was probably under 30 several times and now I am stable. My doc says ITP, not cancer, but still testing.

I feel the same way on the prednisone. I hate the stuff. A second opinion is in my thoughts but I think I will ride this out through the colonoscopy then reexamine everything.

Any thoughts on my WBC?

jeffrey

Tamar,

I have the bruising and when I get a shaving nick or something like that, the bleeding can go on for quite a while, but lately it seems better. That is part of why I am mad, LOL.

Jeffrey
I will get better after I have my rant! :woohoo:

My WBC went up when I was on pred my hema told me that was normal.

Jeffrey:

An elevation in white counts is normal with Prednisone. That's one less thing you have to worry about. Usually, any count that is slightly out of range isn't cause for concern, especially on the high side.

I'm sure anger is one of the stages of acceptance, and seems normal. But it won't get you anywhere. Prednisone probably adds to that since it can cause nasty mood swings. What dose are you on now?

If I were you, I'd question your doctor about the reasons for keeping you on Prednisone since it's not doing much. Obtaining some control over treatment options can really help you feel better about all of this. You can make suggestions once you become familiar with the options. That is not against the rules. If this doctor won't listen to you, get another one. I can guarantee you, everyone hates Prednisone and most of us have been there. It does get better!

40k is not a bad count. Sometimes with ITP, you have to settle for less than normal, as long as it is a safe count and symptoms are minimal. No reason to be scared at this point. It is what it is.

Cold in PA too!

Jeffery,

Can't give you any advice but my prayers and intentions are with you for peaceful resolution. If I was you, I would get a second opinion.

Patti

Good Evening Everyone!

I have had my tantrum and I am now fine! I do have the offical ITP diagnosis. I will be getting a colonoscopy on Feb 8. I will have to have IVIG before that, could you all offer a proper time frame for that? 1 day before, 2 days, 1 week, etc?

Again, I am fine now! LOL I just don't like being heavy. I lost 100# about 4 years ago and began my athletic career (glad I have a day job) and I am just sensitive about it. I will either beat or manage this. I do have a plan to get off the steroids. I will take care of that after my colonoscopy is interpereted.

I am entering a few races tomorrow, the Indianapolis Mini Marathon, and a couple of triathlons. I will not surrender what I love to do to this managable blood disorder.

I thank you all for your support and information. I really appreciated it. I plan on being around here for many years to come! I will be having some very specific and maybe out of range questions that will be dealing with my training and ITP. I will appreciate any input! I am getting a couple of new ID tags with the ITP on them. I always wear a tag when I distance run or bike. And at my age a "return address" on your body is not a bad idea! LOL (I liked that one!)

I am now back in touch with my Zen self!

Jeffrey

Great - good to hear that now you can start living.

Happy Friday Everyone!

It was an interesting week! Thanks to all for your support. I have another CBC on Wednesday, then my very first IVIG (GammaGard) on Thursday. These are in prep for a colonoscopy scheduled for the 8th of Feb. After that I have another CBC on the 6th and then an appointment with the surgeon that is going to do the colonoscopy on the 8th. Should be prepping on the 7th and then the procedure on the 8th. LOL I have never had so many doc appointments.

I am feeling fine, at least as well as you can on Prednisone. I have managed to lose a few pounds this week by ramping up my workouts. I just do not sleep well and gain weight! I hate both things!

I registered for the Indy Mini Marathon in May. Is there anyone else on these boards from Indiana?

Have a great evening!

Jeffrey71

Happy Friday to you!

I'm glad you feel like working out while on the prednisone. On the higher dosage and with lack of sleep, I never felt like doing anything but never felt like eating either so didn't have the weight going on.

Being on prednisone, long term has most of my other whole blood counts either a little on the high side (hemoglobin, hematocrit, neutrophils) or on the low side (eosinophils, lymphocytes, monocytes). Until I got off the prednisone for the few weeks, those were always floating around a little above or little below which hematologist stated was normal to happen.

I too have delayed the much dreaded colonoscopy and think I may put that off for a while as all I need is more poor trauma to this body to shake things up.

Hope all goes well for you next week and on the 8th.

Lori

Good news all around. I hope the IVIG works for you!

Good Evening!

Nice to hear from everyone! I went out today and bought myself some new shoes and a medical ID bracelet and then ordered another one for when I swim. My swims are usually a mile or more and in the summer I use the area lakes. If I wash up somewhere I want to be sent to the right address!

Pretty quiet Saturday. Tomorrow we have a ice storm advosiory. I can hardly wait! Winter is probably the one thing I hate worse that ITP!

Tomorrow my wife and I will start on our taxes and start looking at some cruises for this year. That is always a fun thing to do!

Jeffrey

If you wash up! Bah haha! Thanks for the laugh.

Good luck looking for the cruise. Seems like you have a lot in life to look forward to!

Jeffrey, I am in lurve with your positivity! Can you send some of it my way?! LOL

Jeffrey,

I hate winter more than ITP also. Where do you live? I am in Minnesota but grew up in Florida!

Hang in there.

Patti

Hi Jeffrey,
Like your postings as keep a great perspective on things. Can't fix what we have so best thing to do is to look forward to things and if by chance something comes up then be prepared.

I am starting to hate winter this year also more the cold than anything else as live in New Hampshire. So with your thoughts of cruise and warmer weather, just booked a trip to sunny Florida for next week...can't wait and already feel better!

Looking forward to warmth and swimming (even though it will only be for a week)!
Lori

What a weekend! I had my first experience with food poisoning! I really do not care to have another. Let's just say I was very "busy"!

It is going to be a busy week with the doc appointments and the IVIG on Thursday. Can any one comment on what to expect on the IVIG? It looks pretty straight forward. Roll up your sleve, sit down, stay put for 6-8 hours, get up go home!

Your input is appreciated!

Jeffrey71