The other forum it was for ever.. that was much better.

Hello,

I was diagnosed with ITP about 7 years ago. My hemotologist did all the regular tests to try to determine why my platelet counts were low, everything came back negative so he diagnosed me as ITP. I don't take any medications. My platelet leves for the past 7 years since being diagnosed have not been higher then 100,000. The highest I think I've been testest with is about 92,000, but the lowest I've tested is about 51,000. Most of the time it stays at the 60,000 count.

I don't mind living with this because it has never hindered me in anyway, (except when I had my widsom teeth extracted...the surgeon would only operate in the hospital and she made me have a transfusion of condensed platelets the day of the surgery because my count was too low --51,000) But other then that it's never really been an issue.

However, I am getting married next year and my Fiance and I will start trying for children soon after. Now is about the time that I am beginning to get anxious... because my hemotlogist said this would only come up again when I wanted to become pregnant.

My question is.... Has anyone had a healthy pregnancy with their platlet levels being around 60,000 count? I really do not want to have to take any medication.... has any women with ITP in this range...gone through a successful drug-free pregnancy?
Please let me know, as well as what was involved with the pregnancy and delivery. What I got from my MD when I breifly discussed it with her was she would refer me to a hemotologist which specializes in high risk pregnancy...and my pregnancy would be monitored...as well they would probably have platelets on hand. Is that the extent though? Will the specialist be their during the delivery?

Thanks for any feedback and experience.

:silly:

Sandi-I agree with everything you said and I am going to push for Rituxan first. I really have the final say in what happens, I guess. I think Caitlin has already been tested for APS because of her history of migraines and she did test negative. I'm not sure that they've run every test to rule it out but I will ask to make sure. Lupus is the main thing they are checkig for because she definitely fits at least 3 of the 12 symptoms that they have on the checklist. She just doesn't fit the more obvious signs like joint pain or the butterfly rash. She does get really red where it looks like the butterfly rash but it is more of a sunburn look. I hope she has a hood rheumatologist that will cover everything. One and a half more weeks!

I understand your concerns. I am pro spleen myself! Our hemonc want Tim to hold on to his spleen too. He did sort of make a push recently, but not a hard one, for splenectomy, though he doesn't think it will be curative. He says that splenectomy often makes refractory ITP more managable. It didn't for my son's grandma. The only thing that has made it more managable for her is time and age. Her brother, the hematology prof.recently gave me a bit of a lesson in anti-platelet anitbodies. He said that with age, the body stops making so many. That is why she is finally stablizing, at nearly 70 years old and with the help of Rituxan. In your young days, she set a new record for the amount of antibodies, according to him. I assume Tim must be similar. But, regardless, her splenectomy did not help. She continued to be at a count of less than 20k her whole life until recently.

I guess you have to do what you think is best. A whole conference, huh? IDK, seems they must know, but you have to wonder if there is bias involved. I would find out who was in the conference and how many splenectomies they have done. Get another opinion. Life without a spleen is a compromised life...though its possible. Tim's grandma has done fine. She's been mostly healthy...ITP, breast cancer that she beat. Type two diabetes late in life (she is not obese), and hypothyroidism recently. Otherwise she has been fine.

Angel-Caitlin is 11 so we will involve her in the decision making process. She will probably want it if there's promise that it will make her itp go away. She's really tired of the restrictions. I still want to give rituxan a try because I will be wondering "what if" if we didn't. I guess I will hear what her dr has to say when we go. I really haven't heard of many kids that the splenectomy didn't work for on this board. But the fact that it's an irreversible procedure makes it a little more scary. She hasn't had a single treatment in almost 4 years that have ever brought her counts into the normal range.

Not too thrilled. Her dr went to a conference last week and her colleagues were all in agreement that splenectomy was the next step for Caitlin. I don't know what to think. I really want to try rituxan first. We will meet with her to discuss this after her rheumatologist appt in two weeks.

For some reason my Dr has always given my Dex with Rituxan. We've sliced the dosage several times, and Dex alone never worked for me but I'm always given Dex, Tylonol, and Benedryl as pre-treatment everytime I get Rituxan

Spleenectomy scares me too, but the possibility (however slim) of a long term remission is very tempting as well. I'll give Rituxan one more shot, I just end up feeling like blah for several days after each dose. I'll talk to my Dr and see if he would be open to trying 2 rounds insted of 4.

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!