Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: Numbers at 26,000

Numbers at 26,000 2 years 5 months ago #57715

  • Bigjim15
  • Offline
  • Posts: 5
  • Thank you received: 0
Hello my fellow ITP sufferers
I found out about my condition a year ago. I suffer from panic attacks so this information has only sent me into a dark place.. Now at my last Hemo visit my number is at 26,000. I tried prednisone and number went up very little. Dr wanted to try stronger med but then I found out I have diabetes so that has put new med on hold.. I'm scared having this, yet Dr. Seems to not panic. Last I have worked in construction all my life and now I can no longer do this type of work because of fear of getting hurt.. Can I get SSSI for ITP? I ask for any and all input..
Thank you all
James

Please Log in or Create an account to join the conversation.

Numbers at 26,000 2 years 5 months ago #57719

  • Rob16
  • Offline
  • Posts: 1118
  • Karma: 2
  • Thank you received: 266
James,

Prednisone is not a good long term treatment anyway: much too many bad side effects.

Is there a minimum platelet count required for your work? There are two excellent (but expensive) drugs that are very effective for a lot of people. They are called Promacta and Nplate. Both stimulate platelet production. Both carry a risk of blood clots. To minimize that risk, the target platelet count should only be 50,000 which is adequate for most activities but well below normal, and might be inadequate for your work. So if that is not enough to allow you to work, then these are not a good option for you.

For most people the next choice would be Rituxan (also expensive), which wipes out the blood cells that, for many people, attack platelets. When it works, the remission lasts a variable amount of time averaging 1-2 years.

If, like many folks in construction, you have no health insurance, there are some low cost alternatives that may work for you, including Dapsone and danazol.

You haven't mentioned splenectomy, so I assume that no one is pushing it yet, but they probably will. Splenectomy is quickly falling out of favor with the best ITP doctors, and for good reasons. If you get to that point, please bring it up here so we can talk you out of it. :lol:

Your doctor is right not to panic, because 26K is not frighteningly low. We have people here who are leading fairly nomal lives with single digit platelet counts. If you can find a less hazardous job, not treating might be a reasonable option so long as you don't have serious symptoms.

However, if your livelihood is at stake, your doctor should be presenting you with other options for treatment.
Make sure you have a good hematologist. I see you are in PA. Sandi, our moderator, lives there, and might be able to recommend someone good if you are in the same area. Also, one of the PDSA medical advisors is in Philadelphia at Penn.

I don't know much about disability, except that I hear it is difficult to get it with ITP, because they assume there is other work you can do that is not so hazardous. I hope they are right, for your sake!

Please Log in or Create an account to join the conversation.

Numbers at 26,000 2 years 5 months ago #57721

  • Bigjim15
  • Offline
  • Posts: 5
  • Thank you received: 0
I thank you for your information. Well first I see a Dr. At Penn state Hersey and no, no mention of removing spleen. I suffer from panic so unless life depends on it not gonna happen.. Lol As far as work it's too physical and dangerous as chances of getting cut or fall are a risk. I've done only this type of work for 30 years. And honestly with my panic driving has become a real nightmare because I fear having an accident.. Back to my ITP Dr. Said I'm making lots of platelets but at same time my body is attacking them. Immune condition? Was at 36,000 a year ago now down to 26,000. Is this going to keep going down? Dr. Said see you in 6 months. I called the number on here and had a wonderful woman tell me she would send me info. I can't wait to get said info..

Please Log in or Create an account to join the conversation.

Numbers at 26,000 2 years 4 months ago #57884

  • Amcbroom4211
  • Offline
  • Posts: 10
  • Thank you received: 0
Hi, i was just recently was diagnosed with itp in November and have been on prednisone for 2 months. Last count was 30 and before that was 41. My doctor is siggesting infusion now but before that he really have me two options prednisone and if that didn't work then taking the spleen. I've been reading on the side effects on the infusion treatment but wanted to get an idea on what to expect, how long is the treatment and full time mom,full time job, husband works crazy rotating shift so just wanted to try to get prepared. Would like to keep my spleen have a fear of surgery. Also how long did the side effects of prednisone take to go away?

Please Log in or Create an account to join the conversation.

Numbers at 26,000 2 years 4 months ago #57895

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1311
  • Karma: 10
  • Thank you received: 173
Hello Amcbroom. I suspect by 'infusion' you mean IVIG infusion? As far as I know that could range from 1 day to 5 days and perhaps 3 or 4 hours per day. Doctors can prescribe different treatment regimens for different objectives and/or preferences. So, best to ask doctor.

About spleen removal. You doctor may just be testing you for the idea. Some people object to it strongly (most here). If you tell him something like 'I would prefer not to do that' he can adjust him treatment options with that in mind. Conversely, if you tell him you want to do it than he can adjust treatment options for that. It does make a difference.

Sorry, can't comment on the Prednisone part. Never had that. I think you will read on here that one should taper the Prednisone dose so slow that your body doesn't really notice that the taper is occurring.

Hope this helps.

Please Log in or Create an account to join the conversation.

Numbers at 26,000 2 years 4 months ago #57902

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2330
Bigjim:
I know ITP can seem scary, but death from ITP is very rare. Most people get used to it in time and the fear goes away. Since your counts seem to be affecting both your anxiety levels and your ability to work, you might want to either explain that to your doctor or get another opinion. There are treatments that could raise your counts and solve both problems. Rob is right, getting SSDI for ITP is difficult.

AMCbroom:
I'd clarify what type of infusion your doctor is talking about. It could be IVIG or Rituxan. There is a big difference between the two and if time is a factor (it was for me), IVIG is not a good long-term solution.

Please Log in or Create an account to join the conversation.

Numbers at 26,000 2 years 4 months ago #57903

  • Bigjim15
  • Offline
  • Posts: 5
  • Thank you received: 0
I truly appreciate your welcomed feedback Sandi, but the Panic disorder I suffer from doesn't stop. From the ITP to the diabetes or the two back surgeries I need, my mind doesn't stop. I'm seeing a therapist for last two years and with minor improvement. As far as treatment I tried prednisone with no great increase in numbers. I'm currently at 26,000 and holding ng steady. I seen my Hemo Dr 3 weeks ago and at the end he said, see you in 6 months. So really not on any treatment. ? I received a packet in the mail from the Psda and I'm reading the info. I wish I could make the fear stop but it's not that easy. I honestly feel that out of all my problems, panic is the worst. I last told my psychiatrist that I wish I could shut my mind off and she said no we don't want that, that would me you're not alive...

Please Log in or Create an account to join the conversation.

Numbers at 26,000 2 years 4 months ago #57913

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2330
I understand that the panic wouldn't go away, but it might lessen....one less thing to worry about. Also, if you are working, your mind would be busy. Distraction is the best way to combat anxiety. I have a lot of health issues too and understand the anxiety that comes with it. I guess what I'm saying is that there are changes you can make to help your life get better, at least as far as ITP and working go.....
The following user(s) said Thank You: Bigjim15

Please Log in or Create an account to join the conversation.

Numbers at 26,000 2 years 1 month ago #58996

  • Sigmeister
  • Offline
  • Posts: 1
  • Thank you received: 0
Hi Jim. Im a fire fighter living with ITP. Im usually around 75K and just live with it. I guess 42k is as low as I have gone. I dont even see a hematologist any more as they didn't do anything for me. My family doctor monitors my count and unless it gets really low I'm not going to do anything different. The family doctors co pay is quite a bit lower than the specialist. I too suffer from panic attacks. Has seeing a therapist produced any positive results for you or just another copay?

Please Log in or Create an account to join the conversation.

Numbers at 26,000 1 year 11 months ago #59693

  • Winnifred
  • Offline
  • Posts: 785
  • Thank you received: 125
My daughter was recently diagnosed with a panic disorder of sorts. Apparently at some point in her life her flight or fight response was triggered and never shut off. So basically she can handle day to day but when stress happens she looses control. Next time your at the psychiatrist or doctor have them look into that. It requires medication but only a specific type which is why for my daughter she had tried meds years ago without help.

Since her diagnosis and her starting on her meds I can see a major difference on how she handles issues.

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo