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  • Angel85
19 Feb 2010 04:24
Yeah, hopefully they are on their way back down to a resonable level.
  • snowgoose
19 Feb 2010 03:54
Today's count is........807, maybe this is the end of the hike, daily tests continue......

Vanessa ;) :) :huh: :P
  • Angel85
19 Feb 2010 03:47
Replied by Angel85 on topic Platelet Update
Well, I went in today to have my first nplate treatment and i had a blood test and guess what, i couldn't have the treatment today because my platelet count was too high!!! They are 82 today, and they have to be under 50 and they would prefer it to be under 30 before they start it, so he has dropped the pred frm 40 to 20 and now starting tomorrow, i am on 10mg and i will have a blood test next week and see what they are. I am happy they are 82 don't get me wrong about that, but just can't believe that now i am just about to start the new treatment they are too high to start it! I never would have thought i would have heard that come out of the doctors mouth lol
  • Sandi
18 Feb 2010 23:16
Replied by Sandi on topic Rheumatology Appointment
Good luck. I hope this does it for her!
  • teach
18 Feb 2010 22:35
Replied by teach on topic NPlate
I have had four NPlate injections with very few slight side effects. The first week I had headache on the second and third days and a little nausea the second day. The second week I had headache the second day. Last week I had nothing. This week I have had a little nausea today, Thursday. I get my injections on Tuesdays. My count has gone 16,000, 31,000, 51,000, 73,000, 58,000. I am much happier than to be on prednisone.

Good luck to you.
  • tacmom
18 Feb 2010 22:17
Replied by tacmom on topic Rheumatology Appointment
Saw the hematologist this afternoon and we have agreed to start Rituximab next week. She said most of Caitlin's labs are in and they are normal which is great news but she hasn't talked to the rheumatologist yet. She will make sure the rheumatologist is ok with Caitlin starting the Rituximab first. They took more blood to rule out any hepatitis b before they start the infusion. She will go every Wed for the next 4 weeks.

Wish she didn't have to do this at all but maybe, just maybe...this will put her in remission for a long time! :). Oh, and Caitlins count today was 13.
  • Sandi
18 Feb 2010 19:22
Replied by Sandi on topic Rheumatology Appointment
Pauline - don't be sorry! I don't mean to be harsh or blunt or cruel; I just don't want you to have any false impressions. Sometimes I don't phrase things as carefully as I should. My fault.

Sun burns are bad. That's the one thing I have not allowed myself to do since diagnosis. I used to get one bad burn out of the way at the beginning of every summer and tan from there. Now I do it slowly and absolutely no burning. Burning causes white cells to rush to the skin to defend infection and when they die, the body can't clear them like normal people can. That can cause inflammation and antibody production. Very simple explanation - it's more complicated than that (I couldn't explain it if I tried, it has to do with apoptosis).

I know, autoimmune disorders suck. My daughter has Graves and I have many meltdown moments and times of sheer anger about it. It's been 2 1/2 years and I still feel that way at times. Take me, but don't touch my kids!

I truly hope that things turn out okay for both of your girls. They are too young to have to deal with this crap. One day at a time though, right?
  • snowgoose
18 Feb 2010 19:09
Replied by snowgoose on topic Happy Birthday Kim!
Dear Kim,

Wishing you a very special day full of all the things you love
:) :laugh: :cheer: !

Love Vanessa
  • Sandi
18 Feb 2010 18:44
Replied by Sandi on topic Happy Birthday Kim!
Happy Birthday to you! Happy Birthday to you! Happy Birthday, Dear Kimberly.....Happy Birthday to you!
  • Sandi
18 Feb 2010 18:31
Replied by Sandi on topic Not yet diagnosed, but anxious!
Hi KB:

Getting the initial diagnosis can make you anxious - it's new and scary. 47 is still a good, safe count for most. If you need to treat at one point, there are quite a few options. It would benefit you to read about the treatments so you are well versed at your doctor appointment - you'll be ahead of the game. ITP is usually manageable and for most, it becomes a pain in the butt that you learn to deal with.

As for the cold, tingly hands and feet, I wouldn't say that is ITP related. Sometimes, along with ITP, other autoimmune issues that can coincide. I'd mention that to your doctor.
  • momspot
18 Feb 2010 18:18
Replied by momspot on topic New symptom? and possible treatments?
Thank you Cindy! Her platelets were 132 today so they are not dropping the way they were. Other than the bruising, she has fatigue. I know when her platelets get below 90 she usually gets petechiae and very fatigued. She also gets really cranky.

I talked to the pediatrician today and she is getting us some names and numbers for a second opinion. She is stumped about the butt dent but says as long as it's not bothering her or getting bigger she doubts it's anything to worry about.

Thanks so much for your reply!

Momspot
  • Angel85
18 Feb 2010 17:34
Replied by Angel85 on topic Happy Birthday Kim!
Happy Birthday, Hope u have a great day!!
  • Angel85
18 Feb 2010 17:01
Replied by Angel85 on topic NPlate
I am having my first dose of nplate today and i was just curious as to if anyone has had side-effects and when they have had the side effects if they have. What i mean by that is if you have had side-effects within say 24 hours or so of having it or if side-effects can occur at any time during the treatment? I am not too worried about the side-effects it mentions you may get, it is nothing i haven't had before, i am just curious when if any side-effects have occured.
  • julia
18 Feb 2010 15:43
Hi Vanessa, i wonder if they get your count down to under 450k they will be able to leave you alone with the needles etc? Do they think the infection is helping keep your count up too?
Bush Gardens is brilliant and in Tampa an hrs bus trip from Universal, I think they own Sea World too. We have been 3x on holiday but unfortunatley we live in the UK :unsure:
Im doing fine thanks on the Imuran, my last count was 275k on 50mg but my little old bones are suffering with the cold. Just got some fab thermals though :woohoo:
Take care in there hope they let you out soon
Julia
  • julia
18 Feb 2010 15:25
Replied by julia on topic Happy Birthday Kim!
Happy Birthday! Hope you have a grrrreat one! :woohoo:
Julia
18 Feb 2010 12:51
Replied by on topic Need help with mercaptopurine
So you are now toffeegirl Judy - I love toffee too, my daughter in law makes THE best!!

I went to MedlinePlus to look up Mercaptopurine and found this:
www.nlm.nih.gov/medlineplus/druginfo/meds/a682653.html

Scroll down to Other Uses and it says:
"...idiopathic thrombocytopenia purpura..."

Hope you can get your count up and the surgery out of the way!!
18 Feb 2010 12:24
Replied by on topic Happy Birthday Kim!
I hope there is some chocolate cake in the plans for the day!
  • kb04bp
18 Feb 2010 12:17
Not yet diagnosed, but anxious! was created by kb04bp
I went to my doctor regarding an extremely heaving period and had blood work done and put on iron supplements. I have had bw twice since then and my platelet count went from 109 to 47 in one month. My Doctor told me he believes I have ITP. I am current waiting for an appt with a hematologist.

Other then feeling very fatigued I feel okay, but I noticed yesterday that my hands and feet have been cold and I sometimes get a funny sensation in them, almost like a tingling. Is this related to ITP in any way?
  • lili
18 Feb 2010 11:27
Replied by lili on topic Happy Birthday Kim!
Many happy returns and have a blast!

Lily
  • barrelgal
18 Feb 2010 10:21
Replied by barrelgal on topic rituxan cycles
My Dr wants me to wait at least 6 months between cycles, but then again I usually get a partial response about 5 weeks after finishing rituxan.
  • eklein
18 Feb 2010 09:32
Happy Birthday Kim! was created by eklein
Have a very happy birthday Kim! :cheer:

Erica
  • tacmom
18 Feb 2010 08:24
Replied by tacmom on topic Rheumatology Appointment
I figure that if she ends up with this diagnosis, then we will take precautions at home where we will try to encourage her to swim in the early mornings or later evenings when teh sun is just coming up or going down. I just don't know if we can force her to wear a sun hat at 11 years old, but we can make her wear the sunscreen. I know when we went to Florida 2 years ago, we slathered all of the kids every hour with sunscreen, but Caitlin still had the worse sunburn ever and it was the first evidence of any sun sensitivity that she had ever had, so we were assuming that Nplate had something to do with it. Her sunburn was like the "butterfly rash", but it was not a rash...more like the worse sunburn you ever saw and it took days to go away, rather than just a few hours if she even had a sunburn before. She has olive skin so she tans no matter how much sunscreen I put on her.

Sorry to mention it being a "mild" form...I know Lupus is Lupus no matter what, but it really would be hard for me to comprehend that she could get worse in the future because she is seriously, by far...my healthiest eater (will eat fruits and veggies over chips/dessert any day) & she is so fit due to being in cheerleading all these years. Tiffany is my one who complains about joint pain and has some severe cases where we've had to keep her on Motrin for days at a time so that she can walk without too much pain. (Going to get her tested for autoimmune disorders if Caitlin tests positive.)
  • tacmom
18 Feb 2010 07:56
Replied by tacmom on topic nplate
Debbie- I don't really know if Nplate will ever be an option for her. There is a study going on that is following adults on nplate who already have reticulin in their bone marrow. This study is supposed to follow them for 3 years and if it shows that reticulin is hindering with the bone marrow's ability to make platelets or the other cells necessary for survival, then they will know not to allow people showing evidence of reticulin stay on the drug. Caitlin is currentlydoing tests for lupus so based on these results will tell us the next step for Caitlin. I don't think we will be doing splenectomy as our next step.
  • toffeegirl
18 Feb 2010 06:49
Replied by toffeegirl on topic Need help with mercaptopurine
I must be suffering brain fog.

I'd forgotten about a post I'd made entitled Feeling Blue. Thank to Juliannemom, Katie57, foursons,Melinda,KimL, and CindyL for you kind thoughts and prayers. They are so very much appreciated.


KimL, thank you for sharing your experiences with 6-mp. You've given me hope. I'm am going to start taking it next week. :)
  • toffeegirl
18 Feb 2010 06:48
Replied by toffeegirl on topic Need help with mercaptopurine
Thanks for the info re: Simon
Hope you're doing well. I just read that your counts are coming up. Way to go!
  • toffeegirl
18 Feb 2010 06:46
Replied by toffeegirl on topic Need help with mercaptopurine
I tried Sandoglobulin, a newer IVIG, just before my first surgery booking,but my counts instead of rising went backwards... from 62k down to 45K. My anxieties about a 8 hour operation probably play havoc on my counts.
  • CindyL
18 Feb 2010 06:32
Replied by CindyL on topic Need help with mercaptopurine
That was Simon. He hasn't been here to the new site yet. The old site is still available for reading, and if you have access to it, you might find Simon's username 'cause I don't remember it.

What about a 2/3 day dose of IVIG? I see you have reactions to it, but in this situation, would it work? That's what I get when I need to bring my counts up for surgery.

I hope you get your numbers up so that you can get your surgery done!
  • CindyL
18 Feb 2010 06:16
Replied by CindyL on topic New symptom? and possible treatments?
I think a second opinion is in order too. I was diagnosed in /04 and had my spleen out in /06. And I am still at the point I was before I had it out.

Other than bruising, does your daughter have any symptoms? If not, I would suggest waiting on the splenectomy. Let us know what her count is today. 130 isn't bad. I wish my numbers were that high! Good luck and keep us posted.
  • ted23151
18 Feb 2010 05:57
Replied by ted23151 on topic rituxan cycles
Last July I had the 4 doses (not the max)of rituximab, it didnt do anything. Saw a specialist haematologist this year, who has written loads of papers on ITP and she surgested I have the maximum dose of Rituximab, I am waiting for a phone call from the day ward with my appointments for the infusions.
  • toffeegirl
18 Feb 2010 05:55
Replied by toffeegirl on topic liam back on predi
Good luck with the preds. I hope they do the trick.






Toffeegirl
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