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  • Caroline109
08 Feb 2010 09:18
Staying logged in was created by Caroline109
Is there a way to stay logged onto the site so you don't have to sign in/log on every time you come to the new site? With the old one, I could stay logged on all the time, which I liked.
  • tacmom
08 Feb 2010 08:50
Replied by tacmom on topic Next step for Caitlin-dr's recommendation
Wendy-thanks for letting me know about Katie's splenectomy being a success! May I ask how long she had ITP and what treatments she tried before splenectomy. I really think we re headed in that direction but I think we need to try rituxan first to be sure we ve tried everything.

We got back late last night from my daughters' 2-day competition. My older daughters team won 1st but they didn't have many teams against them. Caitlin's team won 2nd and a paid admission to US Finals! I am not sure if the team will go yet because we'd have to travel to either Orlando, Fla or Las Vegas for this competition and that alone costs alot. Due to Caitlin's competition season not ending until the end of April, we won't even consider scheduling the splenectomy until May because the drs already said she can't do any cheer for 2 months after the splenectomy. This is another reason I want to try Rituxan since she now has a break until mid March for her next competition.
  • juliannesmom
08 Feb 2010 06:03
Replied by juliannesmom on topic amazon - shopping - supporting pdsa?
Thanks, Joan.
Norma
  • wendyjlau
08 Feb 2010 03:23
Replied by wendyjlau on topic Next step for Caitlin-dr's recommendation
Katie had her splenectomy when she was 9 (she's now 13). She is very active and ITP was really affecting her quality of life. It was a very tough decision to make (and we have less choices here in Hong Kong - no Rituxan). She responded well to steroids but couldn't take them long term due to endocrine issues. IVIG lasted around 5 days for her so it wasn't worth it. She often had wet purpura (she would bleed in her mouth just from eating normally and often had blood blisters). She went into remission within days of the splenectomy and her count has never dropped below 400 since. She had some bleeding issues during the operation (LAP) and spent 2 days in the PICU. That was scary to say the least. It certainly wasn't a walk in the park.

When she tells people about it, she always says 'I got my life back'. Of course, we worry about infection but all her vaccinations are up to date and we are vigilant. ITP used to dominate our lives with the endless blood tests and trying to predict her counts, not to mention the restriction of activities. It no longer does. I'm not in any way suggesting you should decide on a splenectomy but I just wanted you to hear from someone with a teen for whom it worked. If you want any more information or if Caitlin wants to e-mail Katie, just let me know.
Wendy
  • Bunnie
07 Feb 2010 23:16
Replied by Bunnie on topic Nortriptyline
Can't speak to the drug. But have you been to a dentist and checked for temporomandibular joint (TMJ) Disorders? Your describing two of the major symptoms of it. I wore a bite split at night for years. Interestly when my Thryoid disease was under control, I didn't need it as much.
  • dots
07 Feb 2010 22:56
Replied by dots on topic Tim at 21k, Nplate started today
Tim is a lot older than my son, who will be nine in a couple of weeks. How did he get over his needle phobia? My son's is very bad right now -- I guess six and a half years of IVIG and ITP have taken their toll. Did he just get older? More rational?

We're beginning to try guided imagery (relaxation recordings on an iPod), but haven't used them yet. One put him to sleep at bedtime, though, which I suppose is a good sign.

I'll start a thread on this in a couple of days, but since you mentioned it, Donna, I thought I'd ask.

And good luck with the Nplate!
  • tortie
07 Feb 2010 21:40
Replied by tortie on topic Dogs on prednisone
You know things are bad when prednisone is the best answer!!!!! I hope it works.
  • tortie
07 Feb 2010 21:34
Replied by tortie on topic How many chances do you give a treatment?
I hope your next round gets you a real long term remission.

I'm getting closer to giving up, not quite yet but it could be soon if the IVIG doesn't last more than a couple weeks. I gave up pretty much all my favorite sports and activities for the last few years because of my crappy counts and painful bruising and stupid bleeding. It would be nice to get back to normal if that could happen.
  • lucidawn
07 Feb 2010 14:39
Replied by lucidawn on topic Tim at 21k, Nplate started today
He has overcome the phobia-interestingly. He went for a walk after his recent very bad experience with IV's last month. He said he thought about it, and that's when he wanted a port. When they said he couldn't get one, he realized that the emla was causing his veins to collapse, and so decided after that no more emla. So, he gets all his IVs and draws cold turkey now. So, the NPlate went well, he said it hurt, but not too much. He doesn't seem to have side effects yet. Did Caitlin have any?
  • youngjoan
07 Feb 2010 13:50
Replied by youngjoan on topic amazon - shopping - supporting pdsa?
Norma,

Here's the link to donate to PDSA a through Amazon. The Amazon account was established at the very beginning of PDSA when the site was known as ITP People Place. I'll see about getting the link back on the site.


www.amazon.com/exec/obidos/redirect-home/itppeopleplace

Joan
  • Mindy
07 Feb 2010 11:22
Nortriptyline was created by Mindy
I have ITP and several other autoimmune issues. I have awful headaches and facial pain and after being cleared for everything else Neurologist put me on Nortriptyline - right now only 25mg at night. Anyone have any experience with this drug? It seems to be helping but I am nervous about it long term.
  • tacmom
07 Feb 2010 10:58
Replied by tacmom on topic Tim at 21k, Nplate started today
I hope Nplate will be a treatment that works for him! I hope he doesn't get any side effects from it. How did Tim handle his first injection since he used to have a phobia of needles? Caitlin was so scared at first then she realized she could barely feel anything. I hope he gets a response at lower doses rather than having to go all the way up to the max.
  • Angel85
07 Feb 2010 06:09
Replied by Angel85 on topic Anyone a "Lost" fan?
No i'm not really a fan of it, gotta say, i never really got into that show, it just doesn't appeal to me.
  • Angel85
07 Feb 2010 06:04
Replied by Angel85 on topic Does this new forum have a Chat Room option?
Hey Vanessa,

I just want to apologise for not being able to make it to the chat last week. I was really looking forward to it but I had a bit of a family problem, my cousin was having seizures and was taken to hospital, he is okay now, but it was very stressfull at the time and i just too stressed and worried about that and totally forgot about the chat. I hope to be able to make it this week though.
  • tamar
07 Feb 2010 00:30
Anyone a "Lost" fan? was created by tamar
I just watched Tuesday's episodes, and have to say it looks like the last season will be fun to follow. I was starting to lose interest last year, but now I'm hooked again.
  • Bunnie
06 Feb 2010 23:41
Replied by Bunnie on topic amazon - shopping - supporting pdsa?
The other option is to sign-up with www.igive.com and register PDSA as your chartible contribution. It has dozens of internet sites that contribute from 1-5% to the orginazation of your choice when you shop them.
  • Sandi
06 Feb 2010 21:15
Replied by Sandi on topic Dogs on prednisone
Oh I am right there with you! Shelby was on prescription food for two months trying to dissolve her stones....didn't work. I also had to cook her vegetables every day. For the last year and a half, I am jumping up every five minutes to let her outside to pee. She had a urinary tract infection constantly for over a year. In the snow, it looks like someone was murdered in our front yard. I finally decided I was tired of being worn out every evening (not to mention how she feels) and she had the surgery.

Two week supply of food - $60
Pills every two weeks - $40
Surgery - $500.00
Sandi's happiness - priceless!

Good luck to you!~
  • juliannesmom
06 Feb 2010 19:23
amazon - shopping - supporting pdsa? was created by juliannesmom
Previously on the PDSA site, there was a link to shop at Amazon.com, and Amazon would donate a portion of the purchase price to PDSA. Is that still an option? I can't find how to get to Amazon through the new site. Please help.
Norma
  • eklein
06 Feb 2010 18:14
Replied by eklein on topic Dogs on prednisone
Dogs are doing about the same. All happy and relaxed enough. The ancient one on Rimadyl was pacing starting at 4am. The one with colitis on prednisone is peeing buckets. Somebody, either the pacing girl or the prednisone boy, peed all over their blankets on the floor last night. The big foster guy is perfect as always, if a little naturally stinky. We met a new neighbor dog today, so the big guy will have somebody to play with who isn't ancient or fragile.

Fargo, prednisone boy, has had a problem for a few months now with straining horribly on his stool, and gross stinky loose stool, and not enough of it. That's what they now think is maybe colitis. We thought it was an obstruction, he eats things like carpet and bedsheets, but xrays look clear. They thought maybe allergies so he's been on the ultra prescription diet food, I think it's made out of gold flakes or diamonds or something. Then he was on dog probiotics for a few weeks, that made things worse. So we're trying the pred. He's the one with recurring pancreatitis but this has been different. As soon as they said colitis yesterday I said - why don't we try prednisone - oh my gosh if this works I'll be so relieved but also so mad. We could have tried this first.

Every vet bill is $500 plus or minus a random two digit number. It's wearing...
Erica
  • Sandi
06 Feb 2010 17:42
Replied by Sandi on topic Dogs on prednisone
Shelby is doing good, thanks. She's eating now and walking around a bit more. Still has bloody urine but the vet said that is normal for now.

She is in the Walmart computer as "Shelby canine" for her meds.

Erica - how is your dog doing?
  • Bunnie
06 Feb 2010 17:25
Replied by Bunnie on topic dentist
Yeah, the tea bag thing works. They had me do it when I kept bleeding from my wisdom teeth extraction 25+ years ago. Something about the tanic acid.
  • tamar
06 Feb 2010 12:22
Replied by tamar on topic Dogs on prednisone
Oh, by the way, I had the vet write me a prescription that I filled at Walgreens for about 1/4 of what the vet would've charged. "Rudy Cat" became a Walgreen's customer in the computer.
  • tamar
06 Feb 2010 12:21
Replied by tamar on topic Dogs on prednisone
I've had cats on prednisolone. The vets have told me they metabolize it differently (after seeing the look on my face when it was recommended). They were never on for more than a couple of weeks...Rudy wheezed a bit in the spring, so it might have been allergies. He was on 5mg tapering down to 2.5.
  • julia
06 Feb 2010 11:51
Replied by julia on topic Dogs on prednisone
Sorry your dog has to have the dredded pred! When Sally was on it it made her quite snappy & bad tempered as well as the munchies, peeing and hyper. Same when my cat was on it.
Sandi, hows the dog doing what was the op for?
Hope everyones pets are ok
Julia
  • juliannesmom
06 Feb 2010 06:57
Replied by juliannesmom on topic cesar
While no one wants long-term steroids, for a brief treatment to boost counts for a procedure, steroids are safer, less expensive, less invasive, and less risky, and they do the trick to get most patients enough platelets to have a surgical procedure like cyst removal. Ten days of prednisone allowed my kid to have several stubborn baby teeth pulled for braces. For my kid, IVIG requires a hospital admission and costs about $20,000 before the insurance payment and insurance-related reductions. My part of that is still hefty. For all patients, it at least requires several hours in an outpatient hospital or clinic setting. It involves an IV, with at least some risk of IV problems like infection and puncture issues. IVIG is quite temporary also, lasting only days to a few weeks for most, and its side effects can be excruciating. It is sometimes in short supply due to its military uses. Also, while much care is taken to make it as safe as possible, IVIG is a pooled donor plasma product, with at least some risk of transmitting pathogens. The process has improved a lot, but there were some cases years ago of IVIG-transmitted hepatitis C. I'm glad it works for my kid, but, for her sake, I want it used sparingly.
Norma
  • chot
06 Feb 2010 04:51
Replied by chot on topic Steve a/k/a Gort (moved from old Forum)
Thankyou sandi, for updating us...whilst their is life, there is hope..C'Mon steve..we are all paraying for you...
  • Angel85
06 Feb 2010 01:21
Replied by Angel85 on topic Dogs on prednisone
I didn't know it was safe to give prednisone to animals, i'd hate to have to give any animal that stuff either, it would be painful watching them go through the side-effects and not being able to do anything and what would make it harder to watch would be the animal wouldn't understand whats happening to them, at least with a human even a child you can sit them down and explain whats happening.

Hope your dog doesn't have to be on it long Erica
  • Sandi
06 Feb 2010 00:38
Replied by Sandi on topic Dogs on prednisone
Erica - my dog has Cushings which is the same thing as being on Prednisone. She drinks a lot, eats a lot, pees a lot, and pants a lot. She had a lot of weight gain (which she has lost since being treated), but that probably won't happen to your dog short term.

I wish she had Addisons, since the treatment for that is cheap. Her pills cost $50.00 for 8 of them. She only needs two a week, but when her cortisol levels get up there, I have to give her one or two a day for a while. She's the one that just had surgery yesterday....expensive dog!
  • Angel85
05 Feb 2010 23:18
Replied by Angel85 on topic How many chances do you give a treatment?
This is my second time with the prednisone and i think this will be the last time, it started to work when i first starting using it again. I was getting some good numbers, highest was 76, but my last platelet count was 21 even with 40mg of pred, so it is not given me really good high numbers consistantly.
  • eklein
05 Feb 2010 20:31
Dogs on prednisone was created by eklein
So now we're trying prednisone because maybe my dog has colitis. He's on 20 mg for ten days, then tapering down, he's a 40 lb dog - it seems like a high dosage! Does anyone know what side effects to expect in a dog? I forgot to ask. Will he be hyper? Will he have to pee a lot?

The vet tried to sell me 50 20mg pills for 20 bucks - I don't think so! That's about four dollars worth of prednisone! I'm just using my leftovers.
Erica
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