Search Results (Searched for: )

  • tofer
04 Feb 2010 09:32
Replied by tofer on topic Shingles?
I thought that i remembered you having them before Melinda. I wasnt going to go to the doctor but...some i work with saw the rash and said what are you insane? go to the doctor NOW. I guess with all the other issues i just have a wait and see kinda attitude.
i'm very happy that i didnt wait a minute longer. Mostly because i still have to work.
Its on my left arm and breast all the area that there are no lymph nodes...which is the main reason i even went in. <ok i'm crazy> The anti virals are helping...but i do get the whole herpes simplex thing on my lips, and this has triggered that too...I'm actually kinda worried with the new teeth...that i will spread to my mouth?
I am making sure that my work stays low stress then going straight home to my couch.
LOL B)
  • juliannesmom
04 Feb 2010 06:26
Replied by juliannesmom on topic Donating Blood
What you said about donating twice as much really struck a chord with me. I was always a blood donor, but not as faithful at it as I should be. (I'm O neg and CMV neg, so everyone, even vulnerable newborns, can have my blood.) Once my kid was diagnosed, and I knew how she benefited from IVIG, and may one day need blood or platelets, and that one potential donor was now ineligible, I stepped it up. I still haven't given as often as I could, but I started this year with that goal. I gave in December, and can give again next week. My dad was a faithful donor in his younger years, but now has a condition precluding him from donating. Since some can't give, those of us who can really need to work at this.
Norma
  • juliannesmom
04 Feb 2010 06:20
Replied by juliannesmom on topic cesar
If he takes IVIG, make sure he is well-hydrated before, during, and after, and that he is medicated with tylenol and benadryl, before, during, and after. After, for my kid, means a day or two. We didn't know this the first time, and she had a horrible headache so bad she had to return to the hospital to rule out a head bleed. She was pretreated, but the tylenol and benadryl weren't kept up round the clock. Once we knew this trick, her side effects were minimal to nonexistent in the later treatments. I'm sending you prayer and good thoughts, because I recall all too well the anxiety you feel. I know the feeling about the car rides. I called my kid "the egg," during that time, because I feared she would crack if someone hit the brake too hard or she had a spill. I made unnecessary solo trips to the grocery store to have some time alone to cry in the car, since I couldn't cry in front of her and my family and friends didn't really understand. This can get better. My kid's counts now stay at or near normal, but it took well over a year to get there, and they still dip a bit when she has a virus. All treatments have side effects and risks, which must be weighed against the risk of injury and low counts. If he needs a cyst removed, teeth pulled, etc., treatment is good. IVIG works for my kid, and I'm glad there is a "rescue treatment" available to her. It has a risk, however, and we reserve it for "rescues." On the other hand, while steroids make one feel bad, they don't have the side effects of IVIG, nor the risk. Has there been any discussion of trying a brief course of steroids, with a taper off of them, of course, to boost his count enough to deal with the cyst?
Norma
  • alisonp
04 Feb 2010 05:44
Replied by alisonp on topic wait & watch at 26K
I think this is a decision only you can take, and only you have to be happy with, having taken account of all the risks of each approach.

Having said this, we have really only done wait and watch for my son aged 11, even for the 6 months when he always had counts under 20. He had a couple of goes on prednisolone but they didn't help a lot. I prefer it I think because at least you always know that the kids counts are low, and you need to take reasonable care. You don't get all the ups and the downs produced treatment - my son's counts are varying wildly at the moment of their own accord and I am finding this more difficult to deal with than constant lows.

I think you need to watch the symptoms not the count. As long as the only symptoms are bruising and petichiae, don't worry too much. If she gets more than that, then go talk to the doctor again and make sure you get another count.

If an active, sporty, risk taking 11 boy can do this approach, it is very do-able. As to whether it helps in the long run, well, all I can say is that it hasn't done any harm. Yes, he got bruises and scrapes, didn't look fantastic on occasions - did that really matter? My answer would be no. My son is not better, but his counts are better than they were, and he hasn't had any of the risks or the side effects of treatment.

Deanna (mother of Devyn) is also doing wait and watch with her son who is younger, so she might have some ideas. Hope this helps

Ali
  • Ann
04 Feb 2010 05:17
Replied by Ann on topic Logging in
I find that I browse the forum not logged in because I can't be bothered doing so first, then if I want to answer a post and hit the login link I get taken back to the front page and have to find my way back to the thread I was reading in order to answer. On other forums if you want to answer a post and login there it keeps you there and you can answer immediately.
  • Ann
04 Feb 2010 05:06
Replied by Ann on topic Another "have to"
Well it made me login just to see what the message said.. doh!
  • md_ys
04 Feb 2010 03:42
wait & watch at 26K was created by md_ys
My daughter (3&half yrs) has been dx with ITP past 6 mths...IvIG/winRho/prednisone all works only for few weeks and counts down to teens...now the heamotgst wants us to wait & watch & plans on NO treatment till it falls on 10K..But I am getting paranoid dealing with anxiety of her falling or hit by her brothers(they are triplets)...

does the wait & watch help in long run???
03 Feb 2010 19:34
Another "have to" was created by

Part of the message is hidden for the guests. Please log in or register to see it.
  • Sandi
03 Feb 2010 19:27
Replied by Sandi on topic How many chances do you give a treatment?
I think I might try Rituxan one more time, but wouldn't go for any more than that. I had a much better response after my second round than I did my first.

As for splenectomy....that is a tough decision but I think you'll know when it's time to consider that. I've always said it's time when you get to the end of your rope.
03 Feb 2010 18:46
Replied by on topic Shingles?
Tof last time I had shingles was 2002 - I don't remember what my hematologist gave me for it, I just know it worked. A couple years ago I had to take an anti-viral, don't remember what those pills were either. Neither time did my count go down because of the med.

Don't mess with shingles! You need to get rid of it, you don't want it spreading and getting out of control [a friend didn't know he had shingles, by the time he decided to see the doctor it was too late for him to take anti-viral med & he had to go on prednsione and the shingles had spread something fierce]. Also know someone who had the residual pain from shingles, lasted until the day he died so he had that horrible pain for years and years.


Don't mess with shingles my friend! Behave yourself! :kiss:
  • camacho19
03 Feb 2010 18:41
Replied by camacho19 on topic liam is starting school
my son was diagnosed last dec when he was 3 and a half so when he started school i was nervous. nothing has happened to where he has to go to the hospital, but he has had some pretty bad bruises where he does not slow down for anything. i talkied to his teachers who call me everytime he gets hurt or bump his head so that i am aware of all that goes on. my sons platelet counts are real low to, lately they have been between 5 and 27. i understand what you are going through but as long as you educate his teachers he should do judt fine. i also take other activities for my son to do during outside time like coloring or blowing bubbles so that other kids will do it with him.
03 Feb 2010 18:38
Replied by on topic Logging in
Joan just now I came to the discussion group page - clicked on sign in, logged in and was immediately taken to the main PDSA page when I was on the discussion group page when I signed in. Would have been nice to have stayed on the discussion group page.


Editing this to add:

If you are on your profile page and want to come back to the discussion group and you click on the home that I have copied & pasted:
Home \ Your Profile \ Melinda
you are taken to the PDSA home page not back to the discussion group
  • camacho19
03 Feb 2010 18:36
cesar was created by camacho19
my son was diagnosed a little over a year ago. since this past september his platelets have been so low that they have not gone above 27,ooo. he went today to a new specialist ad they were below 10,000 again. now they are talking about IVIG to see how he reacts to it. so far he has no treatments at all, but he is in pre-k and has horrible bruises all over him although we have told his teachers and the director he cant be rough, last week he had a black eye. He also has a cyst behind his ear that has to be removed so i am thinking about oking the treatment to see if it works for him and to get rid of the cyst at the same time. if anyone out there has any advice or experience with this i would love some. i need something to calm my anxiety. i cant go anywhere with him in the car without thinking if something horrible happenes he might not make it.
  • tigereyes
03 Feb 2010 17:35
Replied by tigereyes on topic Shingles?
Im not sure what I took when I had shingles but I did take them. It helped but not much. I know they are painful. The best thing I can recommend is dont touch it and keep it dry. I didnt know what it was a put hand sanitizer on it. All that did was help it dry out faster. The pain was still there.
  • eklein
03 Feb 2010 15:39
Replied by eklein on topic How many chances do you give a treatment?
The second time I had Rituxan I had a much better remission, with higher counts and lasting longer (April will be two years). The first time only lasted 9 months and my counts didn't hit 200.

OTOH, with WinRho each time I had it there was less of a response, until the third or maybe fourth time it just didn't work.

Prednisone also decreased in the amount it helped. And after a while I refused to take the higher doses the doctors wanted, was only willing to go up to about 30mg which kept me in the 20s or 30s.

I always remember the nice note Steve/Gort posted when he noticed after my second time with Rituxan that my counts were headed back up.

I would lean toward you trying Rituxan a third time, maybe just two infusions which seem to do just as well as more. But I personally fear the splenectomy a lot.
Erica
  • barrelgal
03 Feb 2010 15:36
Replied by barrelgal on topic Update on Danica
It's true that Decadron and Pred can have really different responses. I had a decent response when on the prednisone (but horrible side effects) but on the Decadron I had no response at all. In fact the week I did my decadron pulse my counts dropped from 50K to 8K in just 4 days. Hopefully the reverse will be true for Danica since she didn't have a response to the prednisone.
  • barrelgal
03 Feb 2010 15:26
Replied by barrelgal on topic Nothing is Working
I think we all get down and depressed with this at first. Don't obesess (easier said than done!) There are lots of treatment options out there with even more on the way. Take some time to look around these boards. There are pleanty of people here who have been around for years and have some really great advice. Make sure you educate yourself as much as possible, you can't rely on your doc to know everything about this, but you should feel comfortable bringing up treatment options with him and getting his advice. Good luck!
  • tofer
03 Feb 2010 15:23
Shingles? was created by tofer
They gave me Valtrex. Has anyone else taken Valtrex or had a negative reaction to the anti-viral? The shingles are on my arm that has had all the lymph nodes removed so not taking the meds is really not an option. I was just hoping for some feedback.
thanks
tofer

:evil:
  • barrelgal
03 Feb 2010 15:16
After being diagnosed with ITP more than a year and a half ago, I've tried a lot of treatments and ruled some out. My current course of treatment is Rituxan every 6-8 months, which I've done twice now. The Rituxan does raise my counts, but still not to a level that makes me completely comfortable. Without any treatment I sit in the 8k-11k range and am a 'bleeder' with huge bruises and frequent nosebleeds. After Rituxan I usually jump up to the 80k range a week or so after I have finished all 4 weeks and then slowly go from 80 down to about 30 by the time I start Rituxan again (with a few forays into the 20's if I get sick)
I'm not really unhappy with this response, but I'm a fairly active 26 year old and it's on my mind a lot. I would love to go rock climbing, skiing, horseback riding etc without being in constant fear of a fall. Even with my counts in the 60s on my most recent ski trip I came back with bruises that didn't go away for a month.
I must admit that while I resisted at first I'm started to be lured by a spleenectomy. Rituxan wears me out for the 4 weeks that I am on it and I don't really look forward to doing it agian for the same marginal results. At the same time I keep wondering if the third time will be the charm for the Rituxan and I could start getting counts that would make me comfortable enough to do the things I love more often (fingers crossed for 100K). How many chances would you give a treatment?
  • Bunnie
03 Feb 2010 13:14
Replied by Bunnie on topic Logging in
I can log in to on the main page and then click Discussion groups and stay logged in if I use the link on the blue "member web site menu". Verified on IE version 6 and Firefox version 5.

On the other hand, if I select the select "visit the discussion groups" under the "popular pages" then the results are not consistent. I currently can't get it to fail, but earlier it did....

It does seem that when you click on login, the default from the login window is back to the main page, rather than the discussion group where you started.
  • youngjoan
03 Feb 2010 12:35
Replied by youngjoan on topic Logging in
I just went to check on this and when I logged into the home page I was also logged into the forum and didn't have to enter my info again. Perhaps this is because I have administrator access, but not sure.

Anyone else stay logged in when entering info on the home page?
  • Kim
03 Feb 2010 11:46
Replied by Kim on topic Update on Danica
Good luck with the decardon...
  • Kim
03 Feb 2010 11:44
Replied by Kim on topic Platelets can reproduce in circulation?
One thought I have on how the body knows circulating platelets need to split, divide, fragment (whatever you want to call it) is by the size of circulating platelets. ITP patients have large platelets, because of increased production, due to destruction, so does the body identify that and send out some type of signal to tell them to split? Does the body identify that the production of platelets is revved up to compensate for reduced platelet circulation and when the production is at peak performance, the bone marrow produces a different type of platelet, one that has a preprogrammed way to divided, event thought technically it should be able to, since it does not have a nucleus. Patients who are loosing platelets due to bleeding, also have larger younger platelets. When does a persons platelets make this division? Is it only when population of platelets is low, or is this a normal circumstance for everyone? Just another way to keep platelet population at adequate numbers, or a way to compensate for reduced numbers?

I can't wait to hear more about this research...exciting news.
  • Kim
03 Feb 2010 11:32
Replied by Kim on topic Logging in
I agree. I go to the home page of PDSA, log in and think I'm logged in for the forum, but when I go to the forum, I have to log in again, then it takes me back to the PDSA page. I feel like I'm running around in circles.

I don't mind logging in on the PDSA home page, then going to the forum, but I don't like logging in on the forum and then being taken back to the home page. Can we log in on the forum page and stay on the forum page, or better yet, be kept logged in from the last time we logged in, until we choose to be logged out or for a specified period of time? That would be great! Thanks.
  • CindyL
03 Feb 2010 06:00
Replied by CindyL on topic Donating Blood
I know for a fact that those who are spleenless cannot donate anymore. I found that out when I called to have my name taken off the Bone Marrow Donation list.
  • Carola
02 Feb 2010 21:14
some interesting tidbits was created by Carola
Detrimental Effects of Energy Drink Consumption on Platelet and Endothelial Function


pubget.com/paper/pgtmp_b54b473705503c0eb8390508c5bc8ffd?title=Detrimental+Effects+of+Energy+Drink+Consumption+on+Platelet+and+Endothelial+Function



Researchers Discover Platelets’ Role in Rheumatoid Arthritis


insciences.org/article.php?article_id=8258
  • Carola
02 Feb 2010 21:03
Replied by Carola on topic Platelets can reproduce in circulation?
fascinating. I hope the researchers can use this information to invent new treatments!
  • Sandi
02 Feb 2010 20:48
Replied by Sandi on topic Donating Blood
That question has never really been answered reliably. I believe though that once a person has the antibodies, they may always have the antibodies and donating might just do the donee more harm than good.
  • Sandi
02 Feb 2010 20:42
Replied by Sandi on topic Logging in
I'll bring that up.
  • xray001
02 Feb 2010 18:59
Replied by xray001 on topic Update on Danica
I talked to our hemo today, and he is going away for a month, so we will start the Decardron in March. I guess we will just have to do a couple more IVIg's until then.

Hopefully her nosebleeds won't get any worse. She has not had a problem the last couple of days, but that is because she had IVIg on Friday. Her count is 125 today. :)

Thanks for all your replies.

Michelle
Displaying 71791 - 71820 out of 72235 results.