My husband has chronic ITP, platelets 3000!!

Aug 13, 2010 my husband was full of purple bruises all over his body, The inside of his mouth was black and his tongue was black. He has been getting platelet transfusions and it will go up to sometimes 60,000 then drop down the next 2 days to 6,7, or 8,000. He has already tried 6 units of Retuxan, didn't do a thing. Now we are waiting on the insurance company to see if they will let him do another treatment called Nplate. He has had flare ups before, but nothing as serious as this, and didn't last for no longer that a week. We have been in and out of the hospital getting blood draws and transfusions no less that once every other day. He just got a bone marrow biopsy to see if something is wrong with the bone marrow. He also has a mass on his brain, then can't tell if it's blood or a tumor. He has to go back 09/21 to get another MRI to see if it's changed at all. Anyone out there been in this situation? Has anyone tried Nplate yet?

I tried Nplate and it didn't really work for me. It made my white counts and red counts go really high, but not my platelets so much, but it could work for your husband. What doesn't work for one person may work for someone else.

Transfusions don't usually work; the body will destroy them just as fast as his own. Rituxan can take a while to work. I'm actually going for my first Rituxan treatment tomorrow. Other than the bruising, does your husband have any serious bleeding? I know it's easy for me to say this, relax, but not easy for you to do. Some of us have been as low as 3 or more and not been hospitalized.

Hang in there, it does get better! And welcome to the "family".

Thank you both so much for your input, I know this is going to help me get through this too and be strong for him. I'm just so scared of this disease.

He was bleeding from his nose quite a bit, and the bruising is lighening up now, but thats all.

I can't imagine your platelet count at on 3. I'ts amazing to me what our bodies can take. The doctor told me to watch him and make sure he does't do anything unsafe. He is also not driving, mostly because of the confusion he was having which the doctor thought that might be coming from his mass in his brain.

I was hovering over him too much and knew it was bothering him so I backed off. I know how I would feel if someone was doing that to me. I just love him so darn much, and don't want him to take chances of getting hurt.

So...I wish now that they would of tried retuxin for a longer period of time. I know the doctors or baffled here. They said his case is the worse they have ever dealt with and that everyone is different.

If transfusions don't work for you, what did? I'm just learning about this and have been reading alot, but need to talk to the people who have it. Thank you again, and I'm so glad I have you for support! :dry:

Hi sskeens, I've had similar problems like your husband; though, I didn't have the mass in the head area. My platelets kept falling down to 1000 and I would be put in the hospital. My first stay in the hospital was on July 18 for almost two weeks. My platelets kept hovering from 1000 to 4000, and nothing seemed to bring them up. Finally, the IVIG kicked in and they went up to 12000--just enough to get out of the hospital. But, then 2 1/2 weeks later, I was back down to 1000 and put into the hospital again for 4 days. During my stay in the hospital, I had my lap top and did a lot of research. I stopped drinking coffee, tea, and stopped eating tomatoes. Since doing this, my bruising does not get very bad and I do not get very much bleeding; maybe, just a few blood blisters once in a while. So, your husband can live with low platelets--it's just the brusing you need to be careful with. I actually didn't feel that bad (and, I'm 62 years old!).

The last thing I did that may have helped me out was I stopped taking Doxepin (for sleep at night). I had read that it lowered your platelet count--so I thought I might as well give it a try--so I stopped taking it over 3 weeks ago. Now with the IVIG (4-5 treatments and the Decadron treatment--my platelets went up to 283,000 (though this has just been for a few weeks--they could always fall back down). But my doctor is a little puzzled and told me I had been refactory; and, he's not sure what happened to me. I also feel my body was very run-down and this could have helped to cause the low platelets and why they didn't want to budge.

My doctor also told me I was one of his worst cases--so tell you husband not to give up hope--just try to stay positive and to rest his body--keep his mind occupied with some good thoughts of getting well.

Wishing you the best,

Dee Dee

DeeDee Marie

Thank you so much for all the information. I need to know what IVIG is. I haven't a clue. Also, my husband is 65 and otherwise healthy but there is one thing I asked him to stop drinking Mountain dew or any other caffine drinks. He said he would. He doesn't feel that bad either, which is good. Do you think it would be okay if I mentioned this Decadron treatment his doctor? I think I need to, because maybe she would consider trying it. I don't know how many units of platelets he has received, tons....and it hasn't done anything. His count will go up to about 20-30,000 and then back down the next day or so. I almost feel we are just wasting them. We live in Wellington,Co and seem to have a good oncologist in Fort Collins, just not sure how much experience they have had with ITP.

Thank you so much for responding, this is wonderful and already learning alot. Suzanne

Hello there
I have had IVIG often enough and for me it works though my condition is slightly different in that I have Idiopathic Thrombocytopenia purpula. Its the same accept they do not know why the antibodies attack the platelets. When they do - I can go right down to one and have slight bleeding from the nose... the rash and the bruising. IVIG and Steroids take a little while - about a week and then my platelets rise. Somehow I have had an 8 year break so far and found out last month they had dropped to 10 and raised to 37 in a few hours without treatment so they didn't treat it. My next appointment is on October 12 and am assuming my count is safe enough or they would have called me back. (at the last blood test the blood clotted and they took another but was called in before the results were ready).
I am English by the way and don't have any of the insurance questions that people have on here and people seem to think IVIG can be expensive. Its a case of whether you think the cost is worth the effort of trying. All I know that it has worked for me.

If you want to know more what IVIG is then read up the section on here about treatments. That is a far safer way of you gaining a clear picture for 'I/we' could use the wrong words and think we are being clear. The Treatment section on here is quite useful for it allowed me - even in the UK to find out more about what I have had in the past.

I have also had my spleen removed so if you want any questions answered on that then I will try to help but because am English I wouldn't be able to answer about insurances and best doctors etc.

Hi Suzanne, Yes, read about IVIG and Decadron in our treatment area. My treatment plan was recommended by Dr. Liebman at USC who knows my doctor. I was initially given 40 mg of Decadron along with a slow drip of IVIG (over 24 hours) in the hospital. The IVIG was given as a slow drip over 2 day and the Decadron was initially given as a 4-day treatment (one 40mg dose each day for 4 days). Then, I waited two weeks and was given another 4-day treatment of Decadron. In two more weeks I will then take another 4-day treament of Decadron. And, finally, a 4th dose of Decadron again two weeks later. So far this is working for me. But, I will have to tell you, more than anyting else, it has given me a chance to take a break from the platelets being at 1000 and to rest my body up.

Also, it would be a good idea for your husband not to drink too much caffeine. I drink a little bit of coke once in a while, but not too much. I think our diet does play an important part in the bruising and bleeding--that's my personal opinion. It won't hurt to give it a try. I also keep a log of all the treatments they have been giving me, all my blood test, and anything I can think of relating to my treatment. It's good to have this to look back on. Also, we tend to forget things as time goes on.

Best to You,

Dee Dee

Hi Dee Dee,


Thanks for all this information. I will read on it right away. I also believe that diet has alot to do with it also. I'm going to go read about it right now. Good luck to you, I would like to keep talking to you if it's okay, I don't want to bother you, just keep in touch?

Hello,

My husband has ITP too. Thanks you so much,I'm going to do some reading right now and IVIG treatment. You will probably hear from me again. We are just getting ready to go for another transfusion right now. I appreciate you talking with me so much. Why didn't I think of this before. I can understand you guys alot more than the doctors.

Rhiannon, just to let you know, Idiopathic TP and Immune TP are the same thing. The doctors don't know why our platelets are being destroyed. On the other hand, there are some folks on here who do know what caused their ITP. I don't and have given up trying to figure it out.

Hi Suzanne,
Feel free to write to me any time you wish (if you want, I can also give you my email). It really helps to talk to others who have been through similar situations. And, once we get past 60, we need to be extra diligent in taking care of our ITP. I was originally diagnosed with ITP on July 18, 2006, and went into remission with the Decadron for 4 years. I'm not sure what will happen this time, but I do read as much as possible so that I can understand what the doctor's want to treat me with.

But, if I really have to, I want to be prepared to live with low platelets if I need to. This is why I am trying to take care of myself in ways that I can control. Lets keep in touch. And, I will be keeping your husband in my thoughts and hoping that he feels better real soon. Also, if the doctors could give your husband the IVIG instead of the transfusion, his platelets might stay up for a longer period. The transfusions only work for a day or two, then they fall back down.

Best to You,
Dee Dee

SS - your husband has only been treated with platelet transfusions and Rituxan? That seems a bit odd. Having more Rituxan most likely would not make a difference. Newer research shows that one infusion might be enough (4 infusions was the protocol, but only because it was used that way for lymphoma).

I agree with Sandi that transfusions and Rituxan are not usually the first/only treatments used for ITP. I would suggest a second opinion from a doctor that has some experience with ITP...it may be that prednisone will help, or WinRho, or NPlate (I wouldn't try the NPlate before pred or WinRho, just because of how new it is).

I too am person with ipt althro i am in remission, I have also been threw it all so if i can answer any questions please let me know.I am 64 years old .Wew arew cvall different but yet we are all the same, So I am here if I can help. Joyce

Hello Suzanne
I have had NPlate. It worked wonderfully! Even "to good"! It took my platelets up to 388. That is good to have numbers that high, but not because of the medicine. NPlate makes your bone marrow make more platelets and new platelets are large and sticky which in turn can cause blood clots. I didn't have any though, thankfully! I also had some very painful joint/muscle pain from the NPlate. I don't take it anymore because I also have had Rituxan and it appears to be working. My last count was 70. That's still low, but I can live with it! Happily even! I'm with the others, give the Rituxan some time, and if still nothing then there are several other options out there.

N-Plate is not the only option and the results will depend on the individual. Some of us responded well to the N-Plate with consistent, reproducible results. Personally my count sometimes changed 100k over 7 days, so I terminated the regimen. If you are inquiring about insurance coverage, also include Promacta. Basically this is a 'pill-a-day' versus a 'shot-a-week' regimen. They're both expensive. I was on Promacta but had to temporarily suspend the program due to other medical issues. Two weeks into the Promacta program, my count approach 600k. This was about the time we suspended the program. I am planning a re-start sometime late September.