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:

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.

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

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.

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.

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

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.

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!

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:

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?

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.

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?

Good luck with the decardon...

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.

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.

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.

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

fascinating. I hope the researchers can use this information to invent new treatments!

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

He's got a long road ahead of him.

Thanks for the update Sandi!

It'd be really good not to find ourselves on the front page when we log in. It'd actually be better if we could stay logged in like on the other forum so that every time we come we are still logged in.

I used to donate blood on a regular basis prior to being dx with ITP. The way it was explained to me was that although her platelets are stable she may still have the antibodies in her system and when its given to another person it can cause temp ITP in them. Like if her blood was given to someone who was in a car accident you wouldnt want them to have a low platelet count. If that makes sense to you.

Am going to stay at that dose until I see my UK doctors next week (back home for a few days). I think they would like to reduce it then. But the Spanish doctors are very insistent on my getting higher counts, and they are telling me to have very frequent blood tests and up the dose. I'm impressed that they are taking a keen interest in me - they're ready to give me whatever treatment I want here (I guess it would all be repaid by the NHS, but that's not for certain and there is no mention of cost). Seems like a great health system from that point of view - very good, dedicated doctors doing whatever they think is necessary regardless of who the person is and where they come from. But it's making it a bit awkward, telling them my doctors back home are averse to treatment, where possible, and that I want to wait!

The doctor today told me that the treatment of choice here is Rituximab (after trying steroids and anti-d), and that they have very, very good results with it, around 80% (off the top of her head) not needing any more treatment for a long, long time.

Sorry to hear that. I have also read something somewhere to say if u have ITP u can't donate blood.

You might learn to read your son, see clues that are related to his platelet counts. My teenager really droops, grouches and becomes uncooperative when her platelets are crashing, before we even know it. Then she sleeps until she bounces back. And teenagers aren't that different from preschoolers!

I always made all my kids wear helmets on bikes, elbow pads, wrist guards on skates, etc. We tried to get the soccer teams to wear head gear against concussions cause they should but we were the only paranoid/informed ones. Lots of it is common sense for all so the ITP kid is not singled out. (like seat belts in a car).

I actually like the day & hour ago feature. I know when I last logged on and can quickly scan down to catch the most current posts.

I also don't have to play the 'what time zone" game and does the server reside in a state that does or doesn't do day light savings since my state (Arizona) never does.

My 17 yr daughter has what I call "recurrent acute" ITP, ie her platelets plummet when she's sick but she bounces back without treatment most of the time. She's received IViG twice, once just over a year ago, once 5 years ago. Her platelets have been stable the last two months, since flu shot episode.

Today she was turned down for donating blood because she has had over one ITP episode and is considered chronic.

I had read mixed things about blood donations on the old discussion boards, but this is one more episode in the "no" column.

The sad thing is that she was really looking forward to it, probably since she realizes she's benefited from donors via IViG.

Guess I'll try to donate twice as much. . . .

In the pictures, the platelets stretch into the typical dumbbell shape that is usually seen in cell division, then split. Dr. Weyrich is sending a picture for PDSA to publish in the next issue of The Platelet News.

This finding must make it really difficult for the manufacturers of the platelet counting machines since it is one more shape to consider. It might also help explain why the counters can be inaccurate at low numbers.

Dr. Weyrich found that when he had fewer platelets in his cultures the platelets divided more rapidly then when there were more platelets.