Frustrated with ITP

Hi there. I am a 26 year old female and was diagnosed with ITP in 2007 after finding out I had low platelets while I was in labor and in need of a c-section. The doctors blew off my low platelet counts but after switching to another doctor, I was referred to a hematologist who diagnosed me with ITP.

My first hematologist was very conservative in his treatment approach. He monitored me every couple of weeks, put me on prednisone a couple times and then decided that 60-70 was about "average" for me. He would monitor me monthly and if they dropped, would monitor me weekly at times because I really wanted to avoid prednisone due to the terrible side effects. He felt that a count below 50 was cause for treatment. My counts dropped below that about 2-3 times. A couple times, he checked it again in a couple days and I avoided prednisone but others I had to take it. I have always responded to prednisone with a count increase for a short period of time and then back to my usual 60-70 range. The lowest count I have had so far was 34.

After a couple years, and financial strains, I got really frustrated with having to pay $35 every month for blood draws and seeing the doctor when there wasn't much of a change. Life got busy, money got tight so I cancelled appointments for a few months. As a result, my doctor told me he wouldn't be my hematologist anymore because I wasn't following "treatment plans."
Honestly, I contemplated just ignoring it because it is so frustrating to me but after pressure from my family, I found a new hematologist. This new hematologist says that monthly is too much and he will just check my counts quarterly and is only concerned if it drops below 30. I really don't like the new office much but I guess it suffices. My last count was around 70 again and it's time to go to the doctor for my quarterly check in. I am at the point of really being frustrated with having to do this every 3 months and it always being the same.

I am sick of dealing with this. I have symptoms of fatigue and achiness but just push on because I'm a Mom and I'm working full time, doing an internship and finishing my master's.. But the fatigue really gets to me and it's hard.

I am mostly just venting but I'm wondering if there is anyone else in a similar scenario, persistent low counts but not low enough to really need any treatment much... If so, how often are you seeing the doctor?

I have bruises all the time, and I think I used to be able to tell better when my counts were low but lately when I've had more bruising and been tested, they have been around 70 still.

Also, the old doctor did the tests right in his office so I was able to just come in whenever I had concerns.. This new one has them done at a lab and then I go in a few days later for results.

70 is high count with itp i think,but you have bruises you said,its really hard,like me i opten to see my hema every week,bec i only have 34 platelet count,its really hard financially,and emotionally,im taking steroid for thats my haema told me,i dont know if untill when im going to take medicine but just like me be optimistic thuings will be better soon,dont think too much it will affect you,specially if youre stress

I too have counts that are holding steady around 70. I've only just discovered the problem and had my first appt with my hema about a month ago. Since then, I have seen him every two weeks for rechecks. Because there has been no significant increase in my counts, I just had a bonemarrow bx this mornins. Actually, I am sitting here right now with a big bandaid on my butt. My hema seems to be over cautious with this stuff as I know 70 is a fairly "safe" count (I've never had bruising, or any other symptoms). He did the biopsy to just be sure that there are no underlying issues. (all other counts are normal). I agree, it is frustrating to get stuck so often, but I am already getting used to it and am learning not to obsess so much over the actual numbers. I'm trying not to feel sorry for myself- things could be so much worse. Just roll with the punches and hope for the best. That is all we can do. Once I get the biopsy results I'm not sure how often he will monitor me--I'm hoping it will be no more than once a month. I know it's a hard thing to accept, but I hope that your counts continue to stay safe and you can avoid treatment. Sending positive vibes your way....

Hi Amy - welcome! I always try to spin the perspective and this is the first thought that came to my mind after I read your post.

There are 365 days in the year, and you only have to deal with ITP four days out of that 365. That doesn't sound so bad to me. I know it gets old (believe me, I know), but since it is a chronic condition, you do have to deal with it sometimes. There are some people that go every week for counts and that is intrusive. Quarterly isn't so much. Maybe this doctor will loosen the reigns after a year or so, most do. I agree that monthly was too much in your situation and I wouldn't have wanted that either, but the new doctor seems a bit more reasonable.

I think your attitude is great and the fact that you don't let ITP rule your life is fantastic. It's frustrating to live on the cusp of not having to treat and yet, you're not exactly normal either. But it is better than having really low counts on a constant basis and having to try treatment after treatment. Maybe you could suggest having counts done quarterly without an appointment?

I hovered at 50-60K for 15 years with no treatment. In the beginning I saw the hemo every 3 months, then every 6 months was we were comfortable with the trend. I often felt like I got the pat on the head and not much else with the visit other than pay to copay and come back in 6 month. However, what it did do is give me my trends, I had enough blood draws that I know a virus will raise my counts, a bateriacl infection lower them, and Antibotic will big time drop them. And after firing 3 or 4 hemo's, I got one I liked and developed a relationship with so that when I dropped to 6 we had discussed a treatment plan and I'm involved in making the decisions not having them made for me. I'd give a lot to stablize back at the 50K level and not have to treat.

I don't see symptoms until I'm near 30. I do get nose bleeds from dry air at high counts but that's it. Typically unless I'm down around 30, I need to look for a differnt cause for the fatigue such as I also have autoimmune hypothyroidism and will need a medication adjustment. Thyroid disease is actually common for many of the ITP patients.

While Vitamin C doesn't do anything for our counts, it does help the small capillaries and can reduce or lessen the duration of the brusing.

For the last year I also have been between the low 50's and high 60's. A year ago I was on 1mth blood tests & 3mth visits to the Hema. Six mths ago moved to 3mth blood tests & 6mth Hema visits. Last month was my last visit & he wants to keep me on this programme until something changes. However if I have any conerns I can go and see him earlier. Iam happy with this arrangement. I take vitamin C & D, plus Colostrum capsules.

Getting checked only four times a year and staying around 70k without treatment sounds wonderful to me.

Amyk, this is my first post. The reason I'm posting is because you pretty much have described my situation. I was diagnosed with ITP when I became pregnant with my first child at 33yrs old. My counts were about 50,000. They were going to treat me if I got below that, which I never did. Throughout the years I continued to have a platelet count of anywhere between 60 to 80,000. I had two more children with lower counts during my pregnancies. Now I am 55 and continue with ITP, fatique, aches and pains. Mostly I continue to plug along and pretty much ignore all my symptoms except when I get nasty bruises. I have had the same hematologist who continues to monitor my platelets every 6 months now. My last count was around 90,000, which is pretty high for me. Maybe they are higher because of menopause. Just thought I'd share my situation. We are all different. Hope all goes well for you.

My case is much like yours, I tend to stay at 60-80 without treatment. I have had more tests run and more blood drawn than most people would have done in their life. But, now I am at the point where I see the Dr. once a year and have blood drawn quarterly. It is a pain, but at least I have peace knowing I am ok since I guess it could change.

I am with you, frustrated and now finding out it might hold me back from doing some sports that I want to do.

Vent away, it sucks, but it could be a lot worse.

I have been diagnosed 6 years ago and have been functioning in the 20's. If I get very bruised I get IGG treatments which brings me to a normal level. Friday I was tested and was 7 I got IGG and had a follow up with the doctor today who wants my spleen out yesterday. He says it has a 75% success rate and that at 7 I can have a spontaneous brain bleed. I have a follow up this Wednesday but I just finished chemo following a mastectomy and I don't want any surgery unless it is a cure.
Also frustrated with ITP








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hi! Is what you call IGG (do you mean IVIg?) the only treatment you are on or have tried? I'm not so sure of a 75% success rate. My doc said 60% and I'm not so sure about that either! If I'm not mistaken you can have a spontaneous brain bleed at even 20, or 30! When your that low, the margin for error is significant. I'm sure you know, after 6 years that there isn't a cure for ITP. Only treatments. Go with what your heart tells you. I believe that sometimes is the best medicine!