Sorry to hear they are back down to 5, I remember feeling very scared and stressed when mine were at 6. I agree that splenectomy should be the absoulte last option, luckly my doctor has said he won't even really think about considering it at this point. I think the Nplate and or mabthera is what my doctor is considering for me at the moment. I see him again on tuesday next week.

I'll Hope and pray the Nplate works for him

I've added a new section at the top of the forum for questions about the new format. Please post any additional comments and information there. That way the subject can be separate from the ITP discussion.

Thanks.

I've added a new section at the top of the forum for questions about the new format. Please post any additional comments and information there. That way the subject can be separate from the ITP discussion.

Thanks.

I've added a new section at the top of the board for information about the forum so this topic can be separate from the ITP discussion. Please post any new information there.

Thanks.

This is wonderful news. Hope he continues to get better. Debbie

Some new developements. First of all his cbc came back at 5k. I thought it would have been lower, but I guess the difference between 5k and 1k is not really any difference. They took his bp and and it left petecheia, which was not a good sign, and he had some on his back and other places, but not much. No bleeding yet. The hemonc talked about meds, and our options. He presented the splenectomy, which I was not keen on, and the immune suppression drugs as well. I was more prone to go with those, though I thought he might not take them regularly, which the hemmonc also agreed about. He kind of seemed to lean toward splenectomy. I told him that I'd spoken with Tim's grandma yesterday at length about her history and splenectomy and that it had almost killed her. He said that with adults they don't usually try to get the counts up first, and I told him they had with her, but that regardless it did not have any effect post splenectomy. After that he did offer that option of Nplate. He hadn't offered it before because it was thought that he was taking the Promacta and it wasn't working, but since we know he was not taking the drug, he is willing to try the Nplate. So, that is what we are going to try now...Nplate. We know he will comply because he comes in the office weekly for the injection, so it is monitored. So, maybe this will work for him for a while.

Next, a bit of an amusing story. Tim's count is low, as usual, and we could likely have just gone home today, but it is going to snow and Tim plans to have a snowball fight. The Hemonc says, "Well, you can throw them but you can't get hit in the head with a snowball. We need to treat you with IVIg if you plan to play in the snow." So he was admitted for two rounds of IVIg, lol. The Hemonc walked out laughing.

I have always had Iron defeciecy anemia so I have been going to a hem. doctor for quite some time. On January 15, 2010 during a regular blood test it was discovered that my platelet count was 26,000. My doctor put me on 60mg of prednisone a day and a week later my count was 181. I was droped down to 30mg a day and now my platelets are at 76. My doctor has decided that I may need to try Rituxen or to have my spleen removed?? What questions should I be asking? I feel like this is all happening so fast!

Good news! Glad to hear it.

Thanks Sandi. When I go off prednisone I feel like that way too. I thought I was going crazy all year because I couldn't think straight, I couldn't remember anything, etc. And then I realized it was autoimmune.

After two Rituxan infusions a year ago April, I've had counts above 200 for not quite two years. Last month I was feeling 'wrong' and sure enough my count was down to 110, I think it had been even lower based on how I felt. I worried I was coming out of remission. But since then I'm feeling better and today my count was 158, so it looks like I'm pulling out of the dip.

Depending on how I feel, I'll probably wait a month to get another count.

Erica

After two Rituxan infusions a year ago April, I've had counts above 200 for not quite two years. Last month I was feeling 'wrong' and sure enough my count was down to 110, I think it had been even lower based on how I felt. I worried I was coming out of remission. But since then I'm feeling better and today my count was 158, so it looks like I'm pulling out of the dip.

Depending on how I feel, I'll probably wait a month to get another count.

Erica

I am sorry about your pain. I don't know if this relates, but my friend with MS and other unknown autoimmune disorders, suffers from that insane itching. She was only receiving mild relief from prednisone and allergy meds. She just visited Mayo and they ran a bunch of allergy tests on her and it appears that she has developed new allergies to lots of things. She has found some comfort in elimating many things from her life.

hang in there this is not a fast fix problem . Our bodys take time to recover from all of the meds and stress that we go thru at this time , lots of success stories out there read them , they will help

I was diagnosed with ITP after developing petechia all over my legs and having a platelet count of 5. I was admitted to the hospital and initially responded to dexamethasone and IVIG. Three days later my counts went from 39 to 3. I received more IVIG and a splenectomy and I got to 119 on prednisone. Four days later my platelet count went back to 16 even on the high dose prednisone. My doctor insisted on rituxan that same day. I agreed with her decision but I'm feeling overwhelmed that everything is moving so quickly and my platelet count doesn't seem to really be improving. Has anyone else experienced such frustration?

Amen to that Sandi! I'm just at the point where I'm tired of all the drs appointments and it really makes it difficult to plan at work since I am a teacher. I have to update my substitute book every week so that the lessons are updated and my students aren't just being given "busy" work. (One of my pet peeves!) I truly love my job and I know I do make some kind of impact on their lives. Being a mom, of course, is my first priority though! Sometimes my students get upset when I take off so much. (Things would be so much easier if things only happened in the summer, but Caitlin's counts are ususually good during those months.)

Ali-I'm lucky that only one of my two girls is a daredevil, but it just so happens to be the one with ITP. My other daughter is very careful & listens very well. They are so much fun because they are so different from each other. (However...even as careful as my older daughter is, she has broken some bone in her body 5 times while Caitlin has only broken her wrist once.) I HATE those trips to the ER so I can definitely sympathize with you there!

I left a reply on the other board too. Your doctor doesn't want you to do the Win-Rho with a count of 147, does she? I'd love to have a count like that!

I don't know about the drugs and contraindications. One of my nephews was diagnosed as ADD and took them for a while. My sister found a natural practitioner who does a body scan that is based on the technology that NASA uses. She swears that when he read the scan back to her that he knew things about her boys (youngest has asthma) and their behavior that he couldn't possibly have known. He said that the older one didn't have ADD, that his body had never flushed the mercury from his childhood innoculations. Both boys were put on some natural drops and both improved...

I'm naturally skeptical about a lot of "natural" since there is no real regulation and quality control on a lot of the remedies and no real guidelines on proper dosing. However, this seemed to really work for the boys.

My mom has gone through 6-7 years of dealing with hives with similar itching issues. It seemed to be worst late evening and during the night. The first bout was over 2 years. At the end of the first round, the allergist finally put her on a cocktail of seven different drugs that work on allergy and symptoms for all types of symptoms (nasal, skin, stomach, etc), like benadryl, allegra and even Zantac and that seemed to put them in remission for about a year. The two weeks she did that did slow her down with the typical lethargy the anti-histimines do for some. Also, it seemed to also go hand in hand with finally getting her on T3 (cytomel) vs T4 (synthroid) to manage her hypothyroidism.

They have come and gone in the years since, but not as badly as that first 2 years. Interestingly, last fall, they decided that she needed to have deep gum cleaning and the peridonist thinks she may have had a low grade infection for a long time. Since she went on the antiboditics and had the dental work, No hives.

Hang in there.... the fatigue can become a nasty cycle. I'm down under 30 again this week. Come home from work, to tired to really cook or pack a nutritious dinner or prepare a lunch for the next day. Fall asleep on the couch, wake up at midnight or 3am, check my email and post, go to bed. Hit the snooze bar until I'm rushed to get to work, with no packed lunch and grabbing junk food for breakfast and then lunch... Actually looking forward to WinRho infusion on Monday.

i can tell you in 2001 i was diagnosed with a count of 9. my counts have run between 7 and 14 and i have never treated and never had a problem.

Giselle:

I worried about bacteria even before I had ITP and Prednisone. I watch too much TV.

Anyway, I wouldn't worry too much about a short taper. I've been on 5 to 15 mg's for nearly six years and do just fine at the dentist. I've had cleanings, fillings and a root canal...no problems. You do have to be sure that your counts are good enough though.

Thank you both for the suggestions. It seems worse first thing in the morning and at night. Im and the itching is starting again. I really just want to and cry. Im just having a why me week I guess. I feel extremly overwhelmed. Work isnt even stressful right now and yet I feel like Im at the end of the rope. Im so tired by the time I get home that all I want to do is cry and climb into bed. I take it all out on my boyfriend and I cant seem to stop myself. I find the littlest thing to nitpick at. I just need help dealing with all this.

Benedryl didn't do anything for me either. The pharmacist told me it works differently and suggested I try Zrytec, which works on allergy type rashes and would work better then benedryl. That's how I tried Zrytec, on his suggestion. When I saw the immunologist, he saw that the Zrytec was not doing much, although it was helping. He added the Allegra and Zantec. It took a few days to feel the relief and I notice if I don't take it at a good time, it wears off and is harder to get back under control. It's still there, but at least I can manage it better. Good luck tomorrow

Hi all - I'm going for my first dental cleaning with ITP and wonder if there's anything I need to be thinking about beforehand, other than having enough platelets so I don't bleed.
Are there risks?
Issues with being on low dose prednisone (I'm at the end of a short taper) and bacteria?
Any tips?

Thanks,
Giselle

Ali,
We saw the pediatrician today. He perscribed advair for Tim's asthma control. Tim loves seeing him,too. I think he see's him as a sort of fatherly figure. Tim is missing his father in his life. His father left 11 years ago. He's one of the positive male figures, though of course there is no real relationship there, but there is of course the psychological dependence that happens sometimes with doctors. I think its a pretty healthy one, anyway.

So, the outcome of the appointment was that he agreed that splenectomy was drastic and permanent, and that immune suppression with drugs is reversable. And he also remembered that Tim's grandma's splenectomy did not work and pointed that out.

Tim is still kind of bucking a bit, he says he thinks a splenectomy is inevitable. He's wrong. Splenectomy, in my opinion, is not viable at this point, and is risky with such low counts. Tim's grandma says her splenectomy almost killed her. It took her two weeks to get her counts up hight enough for the surgery, and then it didn't work.

So, I'm not for it. That's what I'll say tomorrow. The other option is to walk around with low counts and treat bleeding symptoms. We might have to do that.

I really feel bad for you two. I can't imagine how awful that is. I have burning skin all winter long, but not the itching.

Jennifer - I am going to suggest something really weird. I rarely believe in alternative treatments, you know that. But have you looked into Mannose? When I was at my worst with a high dsDNA had nasty neuropathy, I bought some. By the time the can was finished, the neuropathy was nearly gone. My dsDNA has been negative since. I do still have other Lupus symptoms, but they are managable. It's expensive, but other than that, can't hurt anything. I sometimes think about trying it again.

I don't blame you, Pauline. There comes a time when you just need that remission already. It gets old.

Hey Ali,

Devyn goes back for a CBC in two weeks....sooner if he shows signs that they have dropped super low. She still hasn't classified Devyn as cronic but i think she is holding back for my sake. Who knows anymore....as you said the only predictable thing about ITP is how unpredictable it can be!!

Deanna

Hi Donna,

How did your trip to the doctor go - any progress on the tablet taking front??

Ali

The thing is this came on so fast. i had the reaction 2 weeks ago and now I burn, itch...Kim thank you for the suggestions, im not sure if the benedryl helps because it knocks me out or if it actually does something. I will bring this up tomorrow and see what he says.

Hi

I sympathise with the restriction of activity problems you are having. Dougie has been in trouble at school for playing footie at break this week - he has been very clearly told he was banned till his count recovers a bit, but gets told off every breaktime, and then still goes out and does it again the next time. I have had letters home from school every day this week, and I am not entirely sure I know what to do to stop him other than telling the teacher to keep him inside at break. His eldest brother Glenn clearly believes that he is invincible, and I wonder if Dougie has a similar approach to life. Glenn has been in hospital twice last year and A&E three times, because he has had accidents falling off his bike at the BMX track. One broken arm, two concussions and many, many cuts, bruises and lacerations later, he still has no sense. I am wondering how many times it will take!!! 2010 has been incident free so far, but I am not holding my breath!

So, I hope that Caitlin manages to stay safe until the middle of the month anyway. Can you bribe her in any way to keep those feet on the ground?

Ali