Boyfriend diagnosed. Treatments not working.

I was looking for some advice and came across this site and decided join since I feel like it's so hard to find any answers or find anyone that is going through this. So I'm very new to these discussion boards and I apologize if this was something that may have already been brought up by someone else.

My boyfriend was diagnosed at the beginning of September this year (about a month and a half ago). He was feeling completely fine and decided to get a physical done just because he hadn't gotten one in awhile. he wasn't expecting anything to come of it. We ended up receiving a call while waiting for my doctor appt (preganancy check-up) and his doctor told him that he needed to go to the ER right away. Apparently, his platelet count was at 14,000 and it was very dangerous. Him and I were both very confused. He said that he felt fine but we went anyways. After almost having a scare that it could have been linked to leukemia they diagnosed him with ITP.

While in the hospital, they gave him a platelet transfusion (which they had to stop after the finishing the first bag due to an allergic reaction) and a corticosteroid called dexamethasone. By the next day his platelet count was up to 23,000. The doctor wasn't pleased withthe result but allowed him to go home to continue hi steroid treatments there. By his next doctor appt about a week later it had dropped back down to 19,000. And this was after being on 10 mg twice a day of dexamethsone for several days. So he was taking a very high dose and he was just feeling horrible (anxiety and insomnia). They decided to continue the dexamethasone until they could get his insurance to approve the WinRho. So he continued for a day and then stopped because he coudln't take it anymore.

At his next doctor appt his platelet a few weeks later his platelet count had gone up to 48,000. And that was after he stopped taking the steroid. So things were looking better.


He recently received the WinRho. Which he took very well surprisingly as they said there was a number of side effects that he could get (and after his allergic reaction to the transfusion and getting the worst of the side effects from the steroids they were concerned he'd have a reaction to the WinRho as well).

The following days he said that he felt fine but when he went into to get his blood test they found out that his platelets had dropped to 37,000. That was about a week ago.

He has just now found out that it has dropped even more to 13,000.

They want to try the WinRho again even though his doctor seems positive that he's gonna need a spleenectomy. However, apparently, there's another drug that they want to try after the WinRho and before the spleenectomy to make sure that they've ruled out all other possible treatments before committing to the spleenectomy.


I guess I just want to know if this is normal. My boyfriend doesn't seem as concerned about the whole thing since he claims to feel fine and its more of the side effects of the treatments that get to him. However, I'm very concerned and worried that we never see a huge increase in his platelets it's always on the very low side. Maybe I'm just pregnant with my crazy emotions and expecting too much too soon or too fast. I just feel like it's extremely concerning that his platelets have never reached anything above a low platelet count or even near what would be considered normal or not dangerous.

I'm just wondering if this is common and if theres is still hope for treatments in these similiar instances.

I appreciate any advice that can be given. Like I said, my boyfriend and I have only been able to gather so much research on our own and we still feel like there's so much left unknown.

It actually sounds like a typical case. Please read up as much as you can. Splenectomy doesn't always work either. It's important as a patient to advocate for themselves instead of just following doctor's orders. I sure would have done things differently if I had known more early on. It wasn't until I took control of my own disease that I got better and went into remission.

I think most of us are blindsided by the diagnosis. I was diagnosed in January after odd bruises appeared and bad bloody noses. My count was 13000. I never went to the hospital although the doctor recommended it all the time. I tried NPlate the Rituxan and now am on Promacta. It has worked really well so far. It is one pill each evening. I started at 50 mg a day and am down to 12.5 a day. On the main page there are descriptions of the treatments. Read everything you can before making decisions. If he has no bleeding the low counts probably are nothing to be scared about. Keep us posted on his progress.

Your boyfriend needs a doctor who is familiar with ITP and knows how to treat it. Some of the things you say make me think that so far he hasn't found one. A second opinion with an experienced haematologist might be an idea, and not one who just treats blood cancers.

I agree with Ann. This doctor seems to be a bit unfamiliar with ITP and seems to be over-reacting a bit. A count of 14,000 does not require hospitalization unless there is bleeding. Does your boyfriend have any symptoms at all...bruising, bleeding gums, nose bleeds, petechiae? ITP treatment should be treated based on symptoms, not necessarily counts.

Also, transfusions should only be given in severe bleeding situations.

A count of 30,000 is safe for daily living and many choose not to treat at that count. As you know, side effects can be worse than the lower counts.

It is way to early to consider splenectomy. That is an old-school treatment that isn't being done much any more because there are newer meds that can be used instead. It also does not work all the time and recent research has been showing that more problems can occur from living without a spleen than previously thought. Protocol states that it shouldn't even be considered until a year after diagnosis since remissions can occur. Also, patients with ITP never need a splenectomy. It is purely optional.

The link below should send you to a booklet produced by a group of European blood specialist nurses as an educational tool for nurses working on general wards. It is extremely well written and not much technical jargon either.

www.ebmt.org/Contents/Resources/Library/...s/ITP%20Handbook.PDF

I'm a nurse but was way out of my specialist area when diagnosed with ITP. I found it very informative

He hasn't really been experiencing any symptoms. He occassionally has a random burise or two where he doesnt know where it came from but nothing significant or that we would have even given a second thought to.

I think my boyfriend is at the point where he feels the treatment/medication he's prescribed is what is actually making him feel sick. He hasn't taken anything since his last WinRho treatment about 2 weeks ago and he feels totally normal and hasn't been experiencing any symptoms.

He has put in a request (about 3 weeks ago?) to see a different hematologist that he found himself within his network. He's just still waiting for the authorization to get approved by his insurance.

He was telling me that he feels his doctor is experience with ITP to some degree but that he just isn't as familiar with the more up to date treatments hence the old school treatments/methods. So he was trying to find someone who may be more aware of today's courses of treatment.

His next appt is at the end of the month on the 30th. They're gonna try the WinRho one more time. Even though it seems to have failed the first time. Hopefully, we can get authorization for a second opinion right away.



And thank you for the link! I'll definitely be sure to check it out!

Usually if Win-Rho doesn't work the first time, it won't work the next time. I've been there. I had five weekly Win-Rho treatments when I was first diagnosed and it didn't raise my counts at all. I didn't know any better and went with it. All I got out of it was a $250 co-pay for each one. I've been on this Forum since 1998 and have never seen Win-Rho work a second time when it didn't work the first time.

It seems odd that they would hospitalize him when he first had a count of 14,000, then pretty much ignore it this time and make him wait two weeks before even having another appointment. Is he going to have a blood draw in between? Maybe I'm missing something.

It is great that he has no symptoms, that is a very good thing!

I agree with the other comments.

I didn't respond well to treatments. Eventually my count stabilised at around 30 & because I had no symptoms I just lived with it. I went on holidays, ate & drank almost whatever I wanted (have to pass on red wine as this causes some extra bruising as it stops platelets being as sticky). I fell pregnant when my count was 30 - it went up into the 70's whilst I was pregnant & was in the 90's when I have birth. I had no transfusions or treatments during pregnancy/delivery as I had no symptoms. & I'm still here & doing just fine.

Don't panic too much about the numbers - focus on bruising/bleeding symptoms. Easier said than done - it took me a long time to appreciate that!!

& get a specialist in itp. It was the best thing I ever did!