tiredness

Thanks, Sandy, for reminding me. I keep blaming symptoms/problems on my platelets when it was probably the high doses of Decadron. Especially since I had the Decadron treatments 4-5 times (each time for four days straight).

DeeDee - that could easily do it. Decadron is very harsh.

Rhiannon:

The next time someone gives you a hard time about which "type" of ITP you have, show them this:

"Primary immune thrombocytopenia (ITP) is an acquired immune-mediated disorder characterized by isolated thrombocytopenia, defined as a peripheral blood platelet count less than 100 x 109/L, and the absence of any obvious initiating and/or underlying cause of the thrombocytopenia. Until recently, the abbreviation ITP stood for idiopathic thrombocytopenic purpura, but current awareness relating to the immune-mediated nature of the disease, and the absence or minimal signs of bleeding in a large proportion of cases have led to a revision of the terminology. Concepts surrounding the mechanisms of thrombocytopenia in ITP have shifted from the traditional view of increased platelet destruction mediated by autoantibodies to more complex mechanisms in which both impaired platelet production and T cell–mediated effects play a role."

bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

There is only one type of ITP.

Today my 23 month old was dx with ITP and level at 13,000. I asked the doc about tiredness because I have noticed he has been much more sleepy. Of course they said that it is not related, but after reading some of these posts it sounds as if tiredeness could be a symptom just not scientifically proven. I really like this site and has helped ease some of my stress from the day!

Welcome to the PDSA site. Your baby is adorable. Yes, a lot of us do believe that ITP and tiredness goes together. There's a whole section related to ITP in children that you should follow; you will get a lot of helpful information.
DeeDee

thanks Sandi for the registra guy kind of embarrassed me in suggesting I dind't know what I had as such though I do know their problem and he has been the only medic in the last 16 years to begin a discussion with me at what I have.... I have two questions for my hemo on wednesday and better write them down and keep them in my hand once there or I will forget again and es the one is what do I now call ITP.... for me but generally speaking if someone does bug me with technicallities I will point them in this direction and the journal....

I have fatigue and brain fog too. Also, blurred vision. I was on prednisone 60mg for 1 week, now taking 50mg for one week. Are these ITP symptoms or side effects from prednisone? I'm have trouble getting out of bed in the morning. This sudden onset of ITP has been a real slap on the backside. I hardly knew what hit me. I'm trying to read my body clues like bruising. I just bump something and bruise. Does anybody know at what platelet levels bruises form or is it different for everybody?

Sounds like side effects from Prednisone. Fatigue, especially after a taper, is normal. Blurred vision is also a side effect.

Everyone is different when it comes to bruises. I got huge black ones and didn't bump myself at all...just spontaneous bruises. It's normal at first to obsess over them, but try not to do that. You'll only drive yourself crazy.

ITP has hit most of us like that - perfectly normal life one day and then BAM - ITP diagnosis. You'll adjust, honest!

Thanks, Sandi. Your words are reassuring. I spend a lot of time thinking the "what ifs". I don't like taking prednisone because of the side effects. My face is starting to look like Yoda. I don't want a bone marrow bx or another platelet transfusion. Does anybody just live with ITP without treating it? I kind of feel like doing that and taking my chances.

Hi,
I was on HUGE doses of Decadron during my treatment starting last July. I was in the hospital for two weeks in July and then for 4 days in August (my platelets went down to 1000). They were giving me Decadron while in the hospital with IVIG and then I started on Decadron (40MG) treatments for 4 days straight and then would completeley stop. They kept doing these treatments until Oct. 15 (when I had my last treatment). The side effects were really bad. Just like you said--couldn't get out of bed, foggy thinking, blurred vision. Sometimes I get the sweats; sometimes I'm really cold. I'm just know getting over being really, really tired. But, my platelets have managed to stay up so far. Last test they were still at 325,000. So, I'll have to say it was worth all the trouble. The second time I was in the hospital, I didn't get hardly any bruises--but I was watching really, really careful what I eat. Dr. Liebman at USC was impressed on how little bruising I had and hardly any other bleeding signs.

Just hang in there. Usually if you rest and take care of yourself, you will start to improve. I didn't think it was possible when I was laying in the hospital for two weeks.
Now, I do try to take better care of myself or just do the best we can in our each unique situation. You might want to read "Tick Tack Toe" if it is still on this site. Wam gave me a lot of good information and I still email him once in a while.
Take care.
DeeDee:)

I have had ITP since 2005 and have had the bouts of fatigue. My problem was anemia, my hemoglobulin count was way down and doc put me on iron pills. On one of the occasions,I had also lost a lot of blood and had transfusions along with the iron pills. When my hemoglobulin went back up so did my energy levels.

Hello everyone,

I am a father of a son, Noah, who had ITP when he was three. We went through seven months of wondering and taking blood and listening to all of the options. Got great care from Doc's at Children's in Dayton, Oh. My son came out of the seven month ordeal and was fully healthy. Didn't have to have steroids, etc. just monitored his platelet counts. He went on to be a great athlete, making the State Finals in Track and being an All-District Soccer player, so no side effects that we know of. One thing about him is that whenever we went anywhere in our car, he would fall asleep ASAP. Our other two sons had no problems like this. Noah would take naps at any chance he could. We would make light of the fact that he was always falling asleep in the car or would fall asleep in the middle of the day at home and didn't think anything about it - just thought that it was Noah being Noah.

Fast forward to today. He is 18 and a college freshman. His grades were very bad in his first semester this fall and he lost five pounds. After grilling him about his grades, he opened up that he would have trouble getting up in the morning and going to class so he missed many classes. He also had surgery last year for a pilonidal cyst near his anus and as of today, after 14 months, the wound has still not fully healed. So....we decided to take him to the Dr. to have blood work done to see if he has low blood sugar or anything that would make him lethargic, etc. He is an okay student but now my wife and I wonder if there are residual effects from his ITP when he was little that we've overlooked these last 15 years. Why is he always ready and willing to take a nap whenever he can and why is his surgery not healed? Dr. says that it is just in an odd area (2" above his anus) and that it is hard to heal in that area.

Took him for blood work yesterday and awaiting results. He did the glucose cola drink as well to see about his blood sugar. My question is for parents who have had kids recover from ITP and how/if it affected them with health issues when they got older. I just want to rule out any physical issues that might have caused him to be less than stellar in school. If this is ruled out, then I know that he just hasn't tried hard, but don't want to crucify him if there is indeed a physical issue with him. Does this sound familiar to anyone? Please email at ericl@jwp-inc.com if you can as I don't get on this website often.

Thanks for your help!

Dad:

I really doubt that ITP would have had any residual affect. My sister had it at the age of 16, went into remission after a year and has been fine since. No problems like that.

The thing is, the doctors can do all of the standard tests but there could still be something they are missing. It's impossible to test for everything. Thyroid would be my first thought as far as ruling something out. I wouldn't assume everything is okay and he is lazy though just because the tests come out okay. You never know.

I also have three children (none with ITP). My two oldest have always been able to get up at the crack of dawn if need be, but my youngest (23) sleeps in ALL the time. He actually did this: Last Black Friday, he was supposed to be at work at 6 am (he works retail). I got up that morning and thought he was gone....didn't think to look in his bedroom. At 12:30 pm, he came walking out of his room and asked why no one woke him up. Six and a half hours late for work on the busiest day of the year! Who does that? He was lucky they didn't fire him. He's always been a sleeper like that...don't know why. I've read some articles that some people are just wired that way, especially teenagers.

I hope they don't find anything and if they do, I hope it's something that can easily be fixed and I hope it's nothing autoimmune. Let us know!

cirquefan wrote: I have had ITP since 2005 and have had the bouts of fatigue. My problem was anemia, my hemoglobulin count was way down and doc put me on iron pills. On one of the occasions,I had also lost a lot of blood and had transfusions along with the iron pills. When my hemoglobulin went back up so did my energy levels.

I was diagnosed in 2004 and currently on Ferrous Sulfate for low Iron. Iron level has been down to 35. I get pretty Fatigued when the Iron is that low.

I've noticed that when my platelets go down, so does my iron and hemogloben levels; it seems they are all related. When my platelets were from 1-4, my family doctor was panicking because my iron and hemo went down. Since my platelets went back up--they are both now doing better.

(p.s. Dean: I see that you ride horses, too--I've been riding most of my life. We have two horses and both my husband and I ride together.)

DeeDee, I like to ride but do not do it very often. We took a trip out to Yellowstone and went to a place called, Hells A-Roarin Outfitters in Gardiner MT. It was Awesome!! A bit scary on some of the "narrow" trails though. I was praying the horse would keep it's balance and not slip on a rock or something. Some of the trails were on a pretty steep incline!! At one point my horse decided to take off on a full blown RUN!!! I was a bit behind the rest of the group so I guess the horse wanted to catch up. I thought the horse was just going to keep going. Scared me a bit. The view was Amazing!!!

Dean, sounds like fun! Horses will do that just to keep up. Our mare did that last year with me. Now I just ride the safe Arab; she's real sweet. We go horse camping--but I try to stick to places that are very safe--no mountain ridges! But, when you are young--you are more adventureous!

I was quite tense about half of the time due to the terrain. Horse camping sounds like fun!!! My Sister has a couple horses when I was little, never did ride them though.

Just found out that one of our supervisors at work has 5 horses! Think I'll suck up to her and maybe she will let me see them. Really miss riding!

Good Luck!

Cindy, If you lived near me, I would take you riding. My Arab is really sweet and I let visitors ride her. My beautiful paint was a little bit too much for me as I'm getting older (and after all the meds!)--so we sold her about 1 1/2 years ago. When we go horse camping, we try to go places that aren't too difficult (usually with a club we belong to).

No - I'd rather hear the story of Cindy's sucking up!

Sandi, I don't know HOW to suck up to anyone! Besides, I might not be there long enough; I don't really like the job and right now they're not too happy with me. They have what is called a "handle time", get through the call as quick as you can. Well, my "handle time" is no where near where they want it to be, so I could be out of that job as early as tomorrow. I will miss the money, tho! :lol:

I still take weekly riding lessons. I won't give it up. I ride dressage. The mare they had me on this week decided to do some bucking before she went into the canter (she is very new to the stable), but I try very hard when I get in the stable to check my fear of ITP at the door. My hemo knows that I ride and that it increases my mental health greatly.

tgurin--I agree with you completely. I, too, love riding horses--and it does help your mental state.