PMs were nicer & easier. Since having to email I haven't heard from someone who used to PM me a lot.

If there was a way to delete a post I'd try to attach an image and file - but since there isn't I can't mess around to let you know how it goes.

I am glad to hear Caitlin is doing all right!

Why not just email or call the hematologist's office and let them know you would like a copy of all her labs and when would be a good time for you to come by and pick them up. No point in waiting until you see the hematologist to ask, especially when you aren't sure when you will see her again.

Hope all goes well for Caitlin today!

Thats good to hear that your doing fine with the Nplate. I am fairly certain i will be able to start it tomorrow. My platelets need to be under 30 and i am now down to 2 and a half mg of pred, and i have heaps of bruises, not huge ones, but unexplained ones and lots of petechiae especially in places on my body i know i only get them in when they are really low. I get headaches now anyway, only thing i would be concerned with is the insomnia, but i'll just have to see what happens.


Update: I just got my count back. It is low as i expected, they are back down to 9, so i am going in for the Nplate this arvo, instead of tomorrow, wish me luck everyone.

Hi, thanks for the reply, they did a FBC but I dont know the results. Allthe haem said was that my platelets are abnormal. I asked in what way, and he just said, we need to do more tests. I asked if it was connected to autoimmune and he said lets wait and see. Clear as mud really!!! I also have FBC and various other tests done at the rheumy clinic, they have never said anything about the levels. Thats the problem it seems its a "need to know" and we dont need to know!!! They did say that when theu do the test theu have a volunteer nurse who gives the same amount of blood, so they can compare mine to "normal" blood. They did take into account the meds I am on, they can put markers on them apparently, so it wont affect the results. Just so confused, thanks.

Hi Mariette, I also live in the UK, near Newcastle. Did they do a full blood count? Did the Heama tell you what the count was? They get a lot of the results about 10-15mins after the blood goes to the lab on the computer. The pred & Metheltrixate may be keeping your counts up not so sure about the Hydroxychloroquine, that sounds like thats got quinine in it. If your count looked not too bad on the computer the heama would not have been too concerned. GPs dont understand and see a lot of ITP so i think they panic.
Julia

Hi, I have just had an aggregation/nucleotide test performed at the haemotology dept. I have bruised really easily for years, lately its been even worse. My gp was concerned. I also have an auto immune disease RA, and lupus is also on tghe cards. I am already on pred for my RA along with methotrexate and hydroxychloroquine. I also take amtitriptyline at night to help me relax and sleep. My next appt isnt until 7 June, is this a usual amount of time? When I asked when I should come back for results I was told 3 months, it does seem a long time to wait. Is this the test that will tell if I have thrombocytopenia (spelling!) By the way I live in the UK, dont know if that makes any difference, thanks

My platelets were 90,000 yesterday, taking NPlate. I have had headaches. I, too, have insomnia, but I already had it. I take Lunesta every night, but still have a lot of trouble sleeping.
I had a splenectomy about 25 years ago. It brought platelets up to around 125,000 where they stayed for years. Gradually my numbers fell and through the years I have been on prednisone many times for months at a time. The last few times on prednisone, my count didn't go up but into the 50,000-60,000 range. Without pred. my count was in the 12,000-25,000 range.
So far I am doing fine with NPlate.

I'm looking for some guidelines on when low platelets can be ignored vs need to seek medical attention to measure counts. The situation is a bit unusual in that my 17 yr old daughter has what I call "recurrent acute ITP". Her counts are normal until she gets a virus or even a flu shot. Then they crash. Once the trigger has resolved, her counts rebound to normal. She's been admitted to the hospital three times and treated with IViG twice in the last 6 years. Our experience is that recovering from IViG is physically worse than waiting for the rebound.

When she gets petechia on her legs, her count is usually below 30K. When she's sick it often crashes to 8-20K before rebounding. Last fall she had a cold and the platelets fell to 18K. We always ran to the doctors for blood work whenever we saw petechia. Thankfully the doctors said wait till the next morning and measure, and she was rebounding to 33K the next day and normal within 5 days.

Our first watchful waiting with skipping the doctors was after her h1n1 flu shot. She had petechia, but she was so worn down from treatment for Lyme disease and we knew it was the flu shot causing it which should be a quick recovery, and no bleeding, so we skipped the doctors and all seemed well in a day or two.

Last week she had a cold. Sure enough on day 3 of cold, the petechia came out. But we were snowed in with fallen trees across the driveway and regional state of emergency due to 25 inches of snow. We opted to watch it. She also had one blood blister in her mouth. Her platelets rebounded because the petechiae disappeared within two days. (she also was exhausted on day 5 of the cold, like her body was going into overdrive making platelets, she couldn't function too well even though the cold was resolving).

She's never had nose bleeds. I read in another thread that a blood blister in mouth was a warning sign that it is more severe.

Are there symptoms that indicate we should not try to wait it out and she needs to closely follow counts? i.e. blood blisters in mouth? If it is a longer illness or more severe like the flu, I think the rebound might be too late to wait it out..

She's off to college next year so I'm getting paranoid about learning when she needs to monitor counts closely or when she can bubble wrap herself and wait it out.

Any advice?

Thanks

Have any of your children received one of these? Caitlin was given one today by her hematology nurse. They started mostly for cancer patients but recently added hematology to it at the hospital where Caitlin goes. Wish she would have had something like this at the beginning but they will start from today's treatment. Basically, it is a journal that shows what you have been through. Each color bead represents something you have gone through. Caitlin got a black bead which represents her infusion and a blue bead which represents an IV "poke" and then a multiple colored glass bead which represents courage. I think this is a great idea and it will be something she can hold onto forever that tells her story.

The rheumatologist left a message saying Caitlin didn't have to come back until June since she was already getting treatment and closely followed through hematology. I guess that means everything was fine with her labs but that they will continue to follow her as necessary. I am going to ask the hematologist if we can have a copy of all of her labs. Just not sure when we will see her again. Caitlin finally felt better Saturday morning. Had a 101 fever late last Fri night then I think her fever finally broke overnight. The nurse said she might have had a virus come on at the same time. They are going to keep her infusion rate slow today to see if they can avoid the fever and other sid effects that she had.

Many, many years ago before I was diagnosed as ITP, I had the dentist hit a small vien when he injected the novicain. Since my mouth was numbing, I didn't notice the problem until the next day when I had a lump in my cheek that was 2-3 inches around, hot and painful. I ended up on antibiotics to clear it up. He apologized profusely, saying he'd only ever had it happen to 2 patients in his whole career. (One of them was his wife :dry:). Hadn't thought about it in forever, until you mentioned the concern. Guess it wouldn't be good at a lower count

Ok guys maybe we did sound a bit harsh.... that really isnt what any of us intended. We just think that maybe you are not seeing thru the other side. We have all been where you are at least once. Maybe we all go there several times...around and around.

Hard as it is, you have to get up and get on with it. Your life only has so many days. You have to learn to live them to the fullest do everything you can today because tomorrow, well tomorrow you may not feel up to it. You will waste too much time...
I know you are young and it feels like this is sucking your life away... It will if you let it. Just don't let it.

Don't give up your dance or sport...reduce the risk are you all playing rugby or knife throwing? Joya are you taking steriods? that would for sure make your body feel foriegn to you. You should be able to dance... If your heart and body have the energy to do so DANCE. Your count shouldn't really slow that down. If dance is what makes you feel whole then you need to do that.

My counts have been between 29k & 40k for 10 years. There are months that go by and i totally forget about the whole ITP thing then there will be a bunch of brusies or bloody nose or pink in the sink when i brush my teeth, suddenly my heart races and i think CRUD its happneing again!!!! Now that feeling lasts a few seconds or a few minutes, use to be that he lasted days & weeks.

We are here to support you, to help you, to remind you that you will survive. Feel free to whine but remember that this condition is our reality too. So when we try to keep you honest, we are not really picking on you we are trying to help you see. You are going to need to remain mentally strong, because this ITP thing is annoying and time consuming and sucks.

Sorry Sandi, im the UK Julia not Julia oneup :laugh:

I watched as much of it as possible, it was great! I loved Simon Aaman the Swiss ski jumper, the Ice Hockey (agree with Cindy) the USA hockey team as i expect they were very dissapointed to loose the Gold but the best team won in the end and what is so bad about winning the Silver & saying thanks.
I loved the Ski cross freestyle! did anyone see that? The crashes! Wow!
Julia

wow! when liams platelets are down he ALWAYS complains of sore bones aching muscles and general tiredness,his heamo told us that this is not consistent with itp,but having read your post im glad as i dont think im imagining things anymore thankou and goodluck, jenny :

hi ALI,there is always someone with more problems than us,this is true,but at the end of the day its all relative and what effects and hurts our children does the same to us,i know exactly how you feel . the heamo asked me last week if i was over it yet! i said im past that,now i just get angry,frustrated and all the rest,liam is not 5 yet so at the moment he doesnt get too frustrated,im sure when its time for him to want to play a contact sport he too will get frustrated. from what ive been reading in the past few weeks you seem to be doing an amazing job.keep you chin up,we are all there with you jenny

Hi,

My visit to hospital today, revealed that my count has dropped to 15, which I was sure of due to overwhelming fatique, platelet headaches and blood blisters.

The plan is to increase the dose of eltrombopag/promacta tomorrow if count is still low, I am back to having the blood lady come to me at home, until count is increasing and stabilised.

I am so tired, and having not long had surgery, and the infection, and hospital appointments just about every day has left me with no energy at all. :S

Kim wrote:

I just had to respond to see what I am.... a Fresh, a Junior and when do you get to be an expert? I want that title.

I think my title changed to expert when i got to 80 posts

You're telling me! I'm so happy to have 45K!! I even offered to sign a waiver at the dentist because I've never had any sort of bleeding problems - and usually only have 30K - I bruise easily, but not even THAT badly. He didn't feel comfortable doing work, I guess he's never had a patient with ITP before. I am so frustrated with the whole situation. I have a letter from my Dr. stating that they are not to do ANY dental work if my counts are under 50K. Also, about painkillers, I've always been told to avoid them, if possible because most of them thin blood, so they can cause bleeding - I've always operated on that premise.... I thought that was pretty normal, until reading here....Is it that hemos in Canada have different protocols, perhaps? ARRRRGhhhh! (extreme exasperation!). Again, thank you for feedback.

I have never heard about anesthetics affecting the number of platelets. There is certainly no evidence that dental anesthetics have had any effects on MY platelets.

Also, I've never seen any connection between pain killers and platelet numbers, but I admit I am very limited in what pain killers I can tolerate--Tylenol and Ultram (Tramadol).

Sorry you're having to undergo all this stress. If everyone--your hema, your dentist, and you--could only relax a little. Most of us think 45K would be a lovely number of platelets!

Karen R

I guess, according to the hemo, the problem is the anesthetic, not the bleeding itself. I'm not sure (we don't communicate well, I feel..) but I think the fear is that the freezing injections will perhaps drop my platelets further? Or that I will bleed from the injection site (which is ridiculous considering I was poked 3X yesterday to get blood from me and 3X to get the frigging IV line in....have 2 inch x 4 inch bruise on forearm from that!)?? I'm going to start looking for a new Dr. tomorrow....I think it's necessary to get a second opinion...I just really need to get this dental work done. It's so stupid because I don't want to take any pain killers for fear of dropping my counts, in case I manage to find a hema on my own who will tell the dentist to go ahead, but my toothache is getting worse and worse...I feel like I'm trying to herd caffinated kittens. Thanks for the dental info, friends. It's helpful to talk to people who know what you're going through...I appreciate it.

Thanks for pointing that out Sandi. I worry one day my treatments will suddenly stop working but what good is worrying about the unknown I guess.

I have had IVIG twice when my platelets needed to be upped for surgery, and once when I came off Prednisolone prior to Retuximab it works very quickly raising my platelets from about 15 to 143 in 48 hours, no side effects after the infusion but I have to have antihistamine because of shivers and difficulty breathing during the infusion.

The effects lasted about 6 weeks.

Heather

I used All Clear Insurance just google it, I went to Turkey two years ago. The cost was a little more but the cover was better it cost around £100 for 5 people.

Heather