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  • 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
  • CathyWesleysMom
05 Feb 2010 19:15
Replied by CathyWesleysMom on topic Tim at 21k, Nplate started today
And what a ride you've had!!! I hope he will get a response from the Nplate.

Cathy
  • Angel85
05 Feb 2010 19:13
Replied by Angel85 on topic Another near normal count for Wesley
Wow, that is wonderful news, 127,000 is a fantastic count.
  • CathyWesleysMom
05 Feb 2010 19:06
Another near normal count for Wesley was created by CathyWesleysMom
Last week we went for Wesley’s 6 month appointment with the Hematologist. His count was 127,000!!

For those of you who don't know us, Wesley was diagnosed in 2002 at the age of 2 and 1/2. He had platelet counts under 20,000 (often 6,000) for about 2 and 1/2 years. He’s had WinRho about 30 times, IVIG 3 times, and Solumedrol twice. We watched and waited, even at single digit counts, when treatments stopped working. He was labeled chronic, refractory and severe. Thankfully, with the exception of one bad nose bleed and a terrible trip to the ER, he has never been a bleeder. Around the time he started kindergarten, his counts started going up on their own. They bounced all over the place for another 3 years, but were often in the 40,000-60,000 range. He also started going up with certain illnesses (ear infections, strep, the flu etc.). A couple of years ago he started maintaining normal/near normal counts. He's been between 80,000 and 240,000.

We were always told by our hematologist that a majority of chronic kids (60-75%) would eventually achieve normal or at least near normal counts. That is what happened for us, and that is what I hope for all of you with chronic kids.

Cathy (Mom to Wesley 10 diagnosed 4/2002)
  • Sandi
05 Feb 2010 18:49
Replied by Sandi on topic Next step for Caitlin-dr's recommendation
Good luck! I hope she does okay!
  • Sandi
05 Feb 2010 18:47
Replied by Sandi on topic How many chances do you give a treatment?
Well, it's a steroid, so you get a burst of energy (I did anyway) and it also helps to inhibit side effects.
  • nadia
05 Feb 2010 18:34
Replied by nadia on topic wait & watch at 26K
We have watched and waited for 9 months Zac(5yrs) lowest count was 37. 72 at moment Dr has told us if it goes under 30 he will start treatment. Although I have worried myself sick about my little boy at the moment he only has to worry about 4 weekly blood tests, and as he doesnt seem to be a bleeder I feel why give him more things to worry about at such a young age, we don't know what the future holds so let him live a little and I'll do the worrying.
  • nadia
05 Feb 2010 18:05
Replied by nadia on topic liam is starting school
Been reading the discussions for a while but my first post. My son was diagnosed june09 aged 4yrs and started nursery in the following September. I contacted the school before he started and discussed itp with them unfortunatly it seems quite rare in the UK and nobody in his school knew of the condition. One of the stipulations that I put in his letter to the school was that on the very unlikely event of Zac being knocked unconcious that they were not to contact me first but get emergency help, this may seem over-protective but whilst they are looking for contact numbers an ambulance could be on its way. Also I was told that the pin prick bruising is similar to a meningitus rash so everyone who comes in contact has to be aware that Zac doesn't have this. Lastly after reading other links on this site I have now ordered Zac a medical alert sports bracelet that he picked himself, so even if he is with a new teacher or on a school trip I feel a little better about him being at school.

Hello to everyone,
Nadia.
  • barrelgal
05 Feb 2010 17:28
Replied by barrelgal on topic How many chances do you give a treatment?
No, and I don't think I've ever had my Dr talk about it. What does it do?
  • tabrte95
05 Feb 2010 16:44
Replied by tabrte95 on topic rituxan cycles
Sandi,

Thanks for the info.

Lisa
  • lucidawn
05 Feb 2010 16:42
Tim at 21k, Nplate started today was created by lucidawn
We went to his weekly appointment today. We walked in and the hemonc said, "did you see his count last week?! It was 72k!" I said, "yeah" very unexcitedly, lol. Of course, he's always optimistic that Tim will bounce back any time (which he could), but I didn't expect it, and just figured we'd see what we were dealing with today. So, his counts came back at 21k, and so it was decided to start the Nplate. We had to wait for a while for the pharmacy, then after the injection we had to make sure there was no reaction. We go back next week for the second injection. Hopefully he will get some response from this. I know that it might take a while. I know it might not bring up the counts that much or at all, but might keep him from bleeding or keep him stable. Well, as usual, we'll strap ourselves in and ride it out. B)

Hope everyone is well.
  • Sandi
05 Feb 2010 15:16
Replied by Sandi on topic Logging in
I'm having to log in nearly every single time.
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