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  • 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.
  • tacmom
05 Feb 2010 15:05
Replied by tacmom on topic Next step for Caitlin-dr's recommendation
Thank you for this very informative article! This gives me more knowledge in what to ask the rheumatologist about in what I think describes some of Caitlin's symptoms. We're off to our out of town trip for a 2-day competition. Caitlin just informed me that she had 2 bloody noses at school today and she was only there 3 1/2 hours. :( I will look on the map where the nearest ER is if she gets an uncontrollable one. (We have never had to use a dr out of town and I hope we don't have to start now.)
  • eklein
05 Feb 2010 12:48
Replied by eklein on topic Logging in
I've got this url set up on my quick links tool bar:
www.pdsa.org/discussion-groups/latest.html
It takes me directly to a list of discussions with the newest at the top.

I've been logged in for over a week now, but just today it made me log in again. I agree, I want to stay logged in.
Erica
  • Sandi
05 Feb 2010 11:08
Replied by Sandi on topic Next step for Caitlin-dr's recommendation
Patients with SLE have an increased incidence of the antiphopholipid antibody syndrome. This syndrome is defined by the co-occurrence of thrombotic events and the presence of autoantibodies against negatively charged phospholipid, such as a biological false-positive VDRL, lupus anticoagulant, or anti-cardiolipin antibody. This syndrome occurs most frequently in patients with high titer IgG anti-cardiolipin antibodies or lupus anticoagulant. Patients with this disorders are at risk for recurrent arterial and venous thrombosis, thrombocytopenia, and fetal wastage. The mechanisms of this prothrombotic diathesis are uncertain, but these autoantibodies, perhaps interacting with co-factors, bind to target antigens on endothelial cells, platelets or coagulation factors producing a hypercoaguable state.

cerebel.com/lupus/overview2.php

The VDRL test is sometimes positive in the absence of syphilis. For example, a false positive VDRL can be encountered in infectious mononucleosis, lupus, the antiphospholipid antibody syndrome, hepatitis A, leprosy, malaria and, occasionally, pregnancy.

www.medterms.com/script/main/art.asp?articlekey=9853
  • Sandi
05 Feb 2010 10:57
Replied by Sandi on topic rituxan cycles
Lisa:

Studies have shown that having more Rituxan generally does not help. The latest studies show that just one dose or a few lower doses work just as well as the four full doses quoted in protocol. It's usually the amout of time after the first dose that makes the difference, not the number of doses. Yes, I'd give it the 12 weeks and supplement with other treatments if necessary.
  • tofer
05 Feb 2010 10:06
Replied by tofer on topic dentist
Giselle
I had quite a bit of work done at the dentist recently. 7 teeth pulled then they did some work on my actual jaw. All in the office all with Novicaine. The dentist kept remarking that for someone with only 35k I sure had sticky blood. <giggle>
Seems that the platelets we do have try their best to work. I had no issues bleeding.
If you are really worried about it, i had an extraction that was slow to clot we used a tea bag <black tea> i bit down on it for a minute or two and it stopped. Who knew???
  • tacmom
05 Feb 2010 10:05
Replied by tacmom on topic Next step for Caitlin-dr's recommendation
Sandi...what is VDRL? Is it something they still test for? I talked with my husband last night and he also agrees that it is not time for a splenectomy yet. He wants me to go in with an open mind though and listen to what the doctor has to say and why she thinks a splenectomy should come before Rituxan.

I have read that splenectomy doesn't work in those who are refractory to everything or those whose ITP is a secondary disorder. I don't know when they will consider Caitlin refractory, but I want to make sure she "isn't" refractory before we go to this next big step. Before Nplate, she only had 2 IVIGs. One brought her count up to 65 and the other only brought her count up to 32. Then she was on Nplate for 2 years. I consider that a success because she was in the safe range for the majority of the 2 years. Her highest count was 130 on Nplate. Right after stopping Nplate, they did a Prednisone pulse and her count went from 45 to 135. I suspect her count went up so much because she was still coming off the Nplate when she started the pulse. Next, she tried another IVIG because her count was at 19 and she was having alot of symptoms. This only brought her count up to 24. Then her last prednisone pulse did nothing for her and her count was back down to 20. She is not having a whole lot of symptoms right now other than her usual bruising and petechaie. I am really shocked that the nosebleeds didn't come on like they were before and so thankful we're not dealing with that.

I don't know if a response to IVIG is an indicator for a respose to Rituxan. Maybe they know something we don't and that is why they're recommending a splenectomy. It could be because this is what they recommend for patients who are very active. (I read a PPT for when a splenectomy is recommended.) I will be making my decision with the rheumatologist. I really think she will have some input into what she thinks is best for Caitlin. (She's at the same hospital as her hematologist so I am hoping that she is already informed of what they want to do.)
  • tofer
05 Feb 2010 09:31
Replied by tofer on topic Logging in
Change is difficult you guys just give this a chance every new site needs time to work out the bugs.
However the Home Page everytime thing is annoying <giggle> :P
  • cheermom926
05 Feb 2010 08:55
Replied by cheermom926 on topic Rituxan
As Sandi said everyone responds differently to Rituxan and really any treatment. Rituxan has left me in "remission" for over a year. It probably would have lasted longer had I not gotten a bad cold. Danazol and Dexadrone both work for me but I just can't stand taking them. Prednisone works well with IVIG but if I have to go on Prednisone I have to take anti-anxiety and med for stomach.
Hang in there you will find what works best for you with patience. Peace.
  • julia
05 Feb 2010 08:22
Replied by julia on topic Steve a/k/a Gort (moved from old Forum)
It's lovely to hear he knows everyone here is rooting for him, Great too that "the lights are on"!
Bless him,
Julia
  • CindyL
05 Feb 2010 06:01
Replied by CindyL on topic Logging in
I agree with Ann. I had the old forum as my homepage.
  • itpdaughter
05 Feb 2010 02:43
Replied by itpdaughter on topic Another "have to"
oiy... I don't log in because it won't remember my password.... lol you made me log in!
  • tabrte95
05 Feb 2010 02:39
rituxan cycles was created by tabrte95
Hi,
Need a little feedback on rituxan. I've just completed my fourth dose of rituxan yesterday. From what I've read, the protocol is once a week for four weeks. I've also read it could take up to 12 weeks to see a result. BTW, my platelets seem to be crashing much faster since I started the rituxan cycle. Last week they dropped to 5, so I got a dose of IVIG, my usual treatment, and the next day received my third dose of rituxan. This week my count was 35 (definitely a good count for me but I wouldn't call it an improvement as a result of the rituxan since I did have IVIG last week. Actually they would normally jump to andwhere from 70 to 100 and then dropped over a period of two weeks to four weeks to 10 or lower.)
So, my question is for those of you out there who completed a four-week cycle. How long did you wait before doing another cycle, given you saw no improvement? Do I wait 12 weeks? My doc wants me to come back next week for a cbc and, depending on my count, get IVIG if count is below 10, or get another dose of rituxan. I'm not sure why he'd want to do another dose of rituxan (he was with a patient when I was leaving) since I thought protocol was a four-week cycle, but then again he was ready to abandon rituxan after my counts dropped to 5 last week. I told him I wanted to do the full cycle, but he may have misunderstood and thought I wanted to just keep taking it weekly for an unspecified period of time until we get a positive result. I'm not worried about him suggesting doing rituxan again. My plan will be to check the count next week and if they've dropped to 10 or lower do IVIG. I won't do another rituxan just yet since I want to give it some time to work. I just want to know how long should I wait between cycles?

Thanks for any feedback,
Lisa
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