Newbie very glad to be here

Hi I am new here and just so glad to have found this site where there are others who I can talk and share with who are also dealing with ITP. One of the unexpected side effects of having ITP for me has been the loss of many of my friends (or people whom I thought were my close friends). Once they found out I was sick and needed on-going treatments they pretty much just all kind of faded away. And since I lost my parents when I was younger and have no other close living family, that left me pretty much alone. I don't know if anything like this has happened to anyone else here or if it that there is just something wrong with me (besides my ITP!). I will say that I have been very sick since first being diagnosed with ITP. At first my platelets were around 10 and even with treatments they would only go up to about 20 or 30 and then plunge back down again within days. So I was receiving treatments approximately every six weeks just to keep them up this much. I went through four different treatments before my doc found that IVIG worked for me -- not so much in raising my platelets up a lot higher, but in keeping them up after treatment for a longer time. But going through all the treatments did a job on my immune system and I ended up in the hospital over and over again -- seven times in two and a half years. I had PCP pneumonia three times, serum sickness, drug-induced rheumatoid arthritis and sepsis. I also developed an arrhythmia and had a TIA during that period. And each hospital stay was approximately two weeks with home health care or rehab afterwards. I guess it is no wonder all of my friends disappeared. I guess it is not much fun to be around a person who is sick so much of the time. I am hoping though that now that I have found this website and this forum that I might make some new friends who understand that life does not always go the way we would like it to but that doesn't mean we give up on each other. And I hope that some of you will choose to be my friends once you get to know me. Feeling so alone is as hurtful as ITP. Thanks for letting me share my story with you.

danyi

Danyi:

Your story is unfortunate and unusual. Most people with ITP do not have so many problems with treatments and can pretty much have a normal life. What I mean by 'problems' are all of the side effects that you had; it can take some people quite a while to find a treatment that will keep them in a safe range.

Having had serum sickness twice due to Rituxan, I can attest to how miserable that is. It's a shame that you had all of the other problems too. What other treatments have you had and what were the side effects?

I hope you have a good hematologist who knows a lot about ITP. That is sometimes key to managing ITP well and having a semi-normal life.

Hi Sandi, I just read your story and it sounds like you have had a difficult go of it as well. I am sorry for that and I wish you well as you continue your journey. I have been reading on the forums and have seen your amazing knowledge of ITP and all that is or can be related to it. I have learned many things I did not know already from your posts. Thank you for sharing especially when you have so much to deal with yourself. You have been a blessing to me already and I am sure to all who come to these forums.

In answer to your question I have had IV Prendisone treatments twice for several weeks at a time and although they made my platelets go up they would go right down again often as far down as 1 or 2. It was during the two rounds of these treatments that I got pcp pneumonia for the first and second time. My doc said that the treatments lowered my immune system which in turn made me open to other autoimmune illnesses such as the pneumonia. My second treatment was Rituxan. It never did make my platelets go up very high and they did not stay up. It was while I was having the Rituxan treatments that I had my third bout of pcp pneumonia and the serum sickness and from there the sepsis. After that I had two rounds of chemotherapy treatments (two different kinds I believe). The chemotherapy simply made me sick and it was also while I was going through these treatments that I got the drug-induced rheumatoid arthritis. It was also when my arrhythmia showed up and made me lose my hair! But again it did not do much for raising or keeping my platelets up. I believe the highest they ever got through all of these treatments was in the low 30's. But they never stayed up and would usually get to a point where they would just plunge back down into the single numbers again.

My doctor is wonderful. He is well-known and respected in the field of hematology, and he has a wonderful bedside manner -- a combination that can be hard to find these days. So I feel safe in his care. And he did mention the removal of my spleen, but when I said 'no way, thank you very much,' he did not try to push it. When all of the above failed he started me on IVIG treatments, and although I know they are usually mentioned as a temporary treatment, for me they have been the answer to my prayers. I have O Negative blood, so after having all of the other treatments my doc told me that although there were other options, IVIG was the only one left for me to try because of my blood type. I have been on it for about a year now and my platelets started out doing the same thing as before going up a little and then plunging back down. But as time went on they began to go up and stay up for a bit longer each time between treatments. Now when I say up I am talking about the 20's and occasionally the low 30's. And then just six months ago my platelets began doing something I had never heard of (although I am sure it has happened to others). They started, not only to stay up around the 20 mark, but instead of plunging, at my next checkup, we found that they had gone up on their own to 28. That seemed like a miracle to me. But then at my next checkup they were back down to 22 (no plunge into the single digits), and at my next checkup they were back up to 29. And two weeks ago at my last checkup (six months after my last treatment) they were up to 39 -- all on their own without treatment. My doc very cautiously suggested that something was going on that may just mean some kind of a remission for me. He said he would much rather have my platelet levels up to 50, that we might have to settle for 39 or 40. This is fine with me if it means no more treatments -- even for a little while. It has been great just not having to have any for six months. And I have also not had any added illnesses during this period. So it is a blessing that I accept thankfully day by day, understanding that things can change in a week, a day, a moment. Still, I am very grateful for where I am right now. I have learned well the lesson of one day at a time and know how blessed I am to have each day as it comes.

I hope I have answered your questions, and I am very glad to meet you!

Danyi - nice to meet you too. The Forum is great for information and support. Some people have been here for years and collectively, we've had just about every scenario imaginable.

One thing I did not see mentioned were the TPO's, N-Plate or Promacta. Has your doctor discussed either of those with you?

Since you've had pneumonia x 3 and sepsis, I'd say it's a pretty darn good thing that you still have your spleen!

Hey Danyi,

Your post was hard to read, and it's even harder for me to reply,
I don't really know what to say except I hope things settle down and you find some new friends who will be there for you without conditions. I just really wanted to let you know I read your post and my heart goes out to you.

Des.

Danyi,

My heart goes out to you. That does seem like a very unusual case. As Sandi has said there is someone with every possible scenario. I'm not sure where you live, but there are many local chapters you can join if you want to meet face to face with other "ITPers." Also, I went to the conference last year which really helped to be around people in similar situations.

Hi Sandi,

I have been reading a lot here since I arrived and the Forum is indeed great and has so much information on it. That is a really helpful thing for me for sure. It is also just nice to be able to talk with someone who really understands ITP. It feels like I have finally found a place where I belong. I am really glad I found this website and community.

My insurance will not pay for N-Plate or Promacta because of its cost and because they are kind of the new kids on the block still (to the insurance people at least). I did apply for their funding with the help of the social worker in my hematologist's office, with both of us filling out pages and pages of information over several months only to be turned down for the funding.

I still have my spleen because I have refused to have it removed. Before the IVIG started working, my doc brought it up several times, but I have always said no way. I am older and I am just concerned about the risks. I may have to change my thinking at some point I know, as my doc is still keeping it on the table as a last resort for me!

danyi

Hi Desafina,

Thanks for your note and for your caring and encouragement. Finding this website and forum and such a caring group of people has already been a blessing to me.

danyi

Hi Vdeutsh,

Thank you for your kind words. One of the reasons I was so glad to find this forum is because I have not been able to find any groups for ITPers at all near me. I live in PA about 30 miles away from Philadelphia, which I believe is the closest group to me. But it is too far for me to get to on any kind of regular basis. I have even searched the web, and although there is a goodly amount of information on ITP, I could not seem to find any groups or forums, etc. So I was very glad to find this forum and all of you...

danyi

I got painful joints from taking Cellcept (mycophenolate). I wonder which drug you were taking at that time. I have never heard of anyone else getting that side effect. It isn't common. It went away when I stopped the drugs except that my elbows are still painful at times. I don't know whether that's a coincidence or something left over from then. Have you had any after effects?

Hi Ann, nice to meet you. I am sorry but I do not know what Cellcept (mycophenolate)is. Did you take it for ITP? I have had after-effects as I noted above almost every time I had a treatment during the first year and a half of receiving treatments. I would have to go back and check my records to be sure but I think I got my Drug-Induced Rheumatoid Arthritis while I was taking my Rituxan. I do know that it took a long time after these treatments before the joint pain went away, and I still have flareups from it now and then. Hopefully your pain will lessen with time as well and maybe even go away completely. I hope this is the case for you.

CellCept is one of the immunosuppressants commonly used for ITP.

It's unusual to get as ill as you did while on steroids. Have you always tended towards getting more ill than most? I ask because a few of us here have immune disorders too. Immune disorders are commonly underdiagnosed. ITP often goes along with the immune disorders but it seems to me reading here that very few ever get tested.

Dany,

I understand not having any ITPers close to me. I'm very excited to move to Phoenix, where the founder of pdsa lives. There is a local support group there. The closest active group for me now is 4 hours away. A strange thing did happen to me about 7 weeks ago. We take our dogs to a meet up group to socialize them. The lady sitting next to us was fostering a dog, that my friend ended up adopting. We ended up becoming fb friends and it turned out that her husband had itp and she knew everything about it. I wanted to cry. Someone else has this and understands it. It turns out the world is a small place and you never know who you will meet. The cool thing is her husband has been in remission for 5 years, has his spleen and is a homicide detective. It gave me hope that I could live a normal life as well.

Thanks Ann for the information about CellCept.

I used to be fairly healthy individual until recent years. And yes I do have immune disorders as well now. And although I would never wish sickness of any kind on another, it is comforting to know that there are others here with more than one illness. And I agree that immune disorders are so very often under-diagnosed, or upon occasion thought of by one doctor I had to see as 'all in my head!'

That is wonderful that you will be moving to Phonenix where the PDSA founder is as well as a local support group for you to attend. And that is a great story about finding out that your new friend's husband has ITP. It is great to have someone who really understands to talk to. That is one reason I am so very glad I found this group. I hope your move goes well and will be looking for updates of how things go for you in Phoenix. Stories like your friend's husband really do give hope, to you and to all of us that hopefully one day we might live a better life health wise! Thanks so much for sharing that story.

I am still learning the ropes when it comes to posting. And I am sorry that I did not note that my last post about Phoenix and all was in reply to Vdeutsch85 post. I will get the hang of the posting soon I hope...