Yeah. I was in remission for 8 years following a splenectomy, but my friend has been for 19 years. So hopefully you are done with ITP.

Thank you for your input. I have been debating for awhile now. Prednisone gives me the energy to function and keeps the platelets up and the short term side effects are ok. I know as I use them longer, that I will experience other side effects that I do not like. Did danazol work for you? How long does the rituxan keep your platelets up? Prednisone low dose keeps me above 100, so sometimes I feel that I shouldn't try rituxan yet. What do you think

Hi Pauline

I don't envy you and Caitlin this decision - I think I would be in exactly the same state of indecision if it were Dougie.

Just thought it might be worth saying that this site might not give you a balanced view of splenectomy just because a fair proportion of the people that have had their spleen will have been "cured". Therefore, ITP won't be an ongoing problem for them, and they won't visit the site anymore. Even in the time I have been looking, there are some people on the adult section who have had a splenectomy and "disappeared" from view - presumably because the operation worked for them.

For the sake of balance, I think I ought to add that this would be one of the last options we would consider for Dougie. I've always believed that your body is designed as it is for a reason, even if we don't always fully understand what that reason is.

Hope you come to a happy and liveable conclusion anyway

Ali

I don't quite understand (from the abstract) whether the combo treatment is in any way better than rituxan without dex. It says it is better than dex without rituxan.
Erica

Dexamethasone plus rituximab yields higher sustained response rates than dexamethasone monotherapy in adults with primary immune thrombocytopenia
Francesco Zaja, Michele Baccarani, Patrizio Mazza, Monica Bocchia, Luigi Gugliotta, Alfonso Zaccaria, Nicola Vianelli, Marzia Defina, Alessia Tieghi, Sergio Amadori, Selenia Campagna, Felicetto Ferrara, Emanuele Angelucci, Emilio Usala, Silvia Cantoni, Giuseppe Visani, Antonella Fornaro, Rita Rizzi, Valerio De Stefano, Francesco Casulli, Marta Lisa Battista, Miriam Isola, Franca Soldano, Enrica Gamba, and Renato Fanin
Blood published 3 February 2010, 10.1182/blood-2009-07-229815

bloodjournal.hematologylibrary.org/cgi/content/abstract/blood-2009-07-229815v1

Abstract

Previous observational studies suggest that rituximab may be useful in the treatment of primary immune thrombocytopenia (ITP). This randomized trial investigated rituximab efficacy in previously untreated adult ITP patients with a platelet count 20 x 109/L. One hundred and three patients were randomly assigned to receive 40 mg/day dexamethasone for 4 days with or without 375 mg/m2 rituximab weekly for 4 weeks. Patients refractory to dexamethasone alone received salvage therapy with dexamethasone plus rituximab. Sustained response (i.e. platelet count 50 x 109/L at Month 6 after treatment initiation), evaluable in 101 patients, was higher in patients treated with dexamethasone plus rituximab (n=49) than in those treated with dexamethasone alone (n=52) (63% vs. 36 %, P= 0.004, 95% C.I.: [0.079-0.455]. Patients in the experimental arm showed increased incidences of grade 3-4 adverse events (10% vs. 2%, P=0.082, 95% C.I.: [-0.010-0.175]), but incidences of serious adverse events were similar in both arms (6% vs. 2%, P=0.284, 95% C.I.: [-0.035-0.119]). Dexamethasone plus rituximab was an effective salvage therapy in 56% of patients refractory to dexamethasone. The combination of dexamethasone and rituximab improved platelet counts compared to dexamethasone alone. Thus, combination therapy may represent an effective treatment option before splenectomy. This study was registered at clinicaltrials.gov as NCT00770562 [ClinicalTrials.gov] .

Erica (who needs to create a sig file)

Good to hear he got through the day. I think he will be just fine. I think sometimes ignorance is better. I find if i know they are low, i stress more then if i just think they might be low.

I haven't really had IVIG, but i am on prednisone now and unless it is a low dose for a very short time, i would highy advise against prednisone. I hate it with a passion, the side effects are not worth the results, my platlets go up high initially when i start it, but once my body has gotten used to it, they go down and sit at around 26-30.

It does get stressfull worrrying about all the things that can go wrong, but if you do that, you will wrap him in cotton wool and not be able to enjoy seeing him have some fun and if your stressed, your child will pick up on that as well. I know it's easier said then done, but just try to relax and not worry about the things you have no control over.

I don't think a wait and watch approach will do any harm other then make you worry more if your having weekly blood tests and they are constantly low as long as you watch him carefully. I don't know if it will do any good though either. I know i was stressing out more knowing the were low and knowing i had to be careful and knowing if an accident happened that i couldn't avoid.

When my doctor was away in nov last year for about 4 weeks or so and my platelts were between 10 and 20, they were just doing a watch and wait approach and doing weekly blood tests and monitering them, although it is probally easier for me to do this at my age as i understand i have to be a bit more carefull when they are low and it wouldn't be easy for a 3 and a half year old to understand that. If your feeling uncomfortable waiting and watching, you do have the right to insist somemting further be done and what your other options are.

Sorry to hear that, that news would have been a big blow to you. My doctor is against removing my spleen at the moment, mainly because he doesn't know if it would be successful and he has said that once it has been removed, even the slightest cold would require antibiotics as you don't have your immune system anymore to fight off the infection. He has said it would be the last option for me only if nothing else worked and then both mum and i have said we would still be reluctant to remove it.

I think i am lucky as the pediatric hemotologist i had when i was younger said most adult hemotologist are knife happy and that would be the first option, but this doctor i have been seeing has had a different outlook.

I would question the doctor as to why he believes this is the best option and why he doesn't want to try the Rituximab or even other treatments before he does something as drastic as removing the spleen.

How old is Caitlin if you don't mind me asking because even from an early age, my parents and doctors always involved me in making decisions and asking my opinion on treatments etc. If mum and dad felt it was the best decision and best thing for me, they would go ahead with it, but i was always given the chance to say how i felt about it and be more involved with what was happening.

Good Luck, I hope it all works out for the best for you and Caitlin.

Hi Stangie.....I have had a spleenectomy and have used EVER treatment available excluding Whipro. Rituxan works best for me over the long term. Occasionally I need a boost with IVIG. For me there are not any side effects from Rituxan. I hate prednisone and danazol. They have major side effects for me. Hope this helps a little.

I understand your worry and frustration on this matter. I was wondering the reasons why the doctors recommended splenectomy over the Rituximab for Caitlin? It has not been a year but pretty close to 10 months since Jordan's diagnosis and her doctors have presented us with just the suggestion of Rituxan. I am sure we will be discussing this again in March when we go back, so I was wondering what your doctors' thinking was. At least you have some time to think on it (I'm sure you've probably already gone over this like me a million times) cause my thoughts are the same as yours about splenectomy, esp when you say I wish it were me, I totally agree! Maybe the adults side will have some helpful thoughts on this matter, too, its a tough decision to make!

Karen
Mom to Jordan

My brother-in-law uses over the counter Lysine as soon as he starts feeling the tingle of a cold sore (herpes simplex). He swears it really works. May not help the singles but you may want to give it shot for the herpes simplex.

I just got an email from the dr and it was NOT what I wanted to hear. She presented Caitlin's case at a conference last week and they were in agreement that Caitlin should have a splenectomy rather than go through Rituximab. They want us to meet after we see the rheumatologist to start discussing what to do.

I don't know what is the right thing to do. Yes, I want Caitlin to have a break from ITP, but I am so scared that there is a chance that splenectomy might not work. Then what? I need to post on the adult side, but I wonder...does it really make a difference if you have low counts with a spleen vs low counts without a spleen? Is being spleenless and having low counts a dangerous thing? I know there are still treatments that can be done for the spleenless, but I think the "treatment" list gets smaller if someone doesn't have a spleen.

On the other hand, Caitlin could be one of the many who have gotten a remission from splenectomy. I just hear of quite a few who "hold on to their spleen" no matter what. Should I be doing the same? Haven't these drs read the recent reports that do show that a spleen is important? Ugh...so much to think about!!! I'd rather this be me than my daughter! I don't want to make the decision "for" her!

ooops i double clicked sorry

I hope that Steve's brother knows how much we appreciate his keeping us updated on top of his taking care of Steve. I hope he is reading Steve all our wishes and letting him know that we are all keeping him in our very best thoughts & prayers.

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

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

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

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

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.

Well it made me login just to see what the message said.. doh!

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???

Part of the message is hidden for the guests. Please log in or register to see it.

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