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I hate HSP

Posted , 4 users are following.

michelle7509
michelle7509

Hello, 

I am a 45 year old female with HSP.  I was diagonised over 20 year ago.  I  had broken vessels all over my body and in my kidney.  The doctor put my on Cytoxan (which is chemo )  I went into remission for 16 years.  About two weeks ago the rash started.  This has thrown me into a tail spin.   I am currently on IV Rituxan one a week for 4 weeks. The spots lessened into crop rashes (as my doctor would say) which means it is not all over may body but in certain parts, left leg, left arm, left stomach. I am also on 80 mg of predisone and 160 imuran.   I was so upset when I woke up this morning and saw them.  Today was my 2nd dose of IV Rituxan... docs states to give it time.  I just want to know if anyone out there has been on IV Rituxan with a good result.  Please responsed .... I am going a little nuts here. 

Michelle

0 likes, 6 replies

6 Replies

  • wendy92629
    wendy92629 michelle7509

    Posted

    Sorry to here of your story Michelle. You mentioned remission. Are you saying you had no other symptoms during that 16years? ie joint pains, urine infections, nasal problems, stomache problems etc. I'm very interested to know of any other health problems you might of had during that time. I do hope your better soon Wendy
    • michelle7509
      michelle7509 wendy92629

      Posted

      Wendy,

      I did have some symptoms... mostly joint pain.. and maybe twice I felt like my vessels were picking.  All doc did has put on a high perdisone for a few weeks and it would stop. (but i was put on a lot of cytoxan to get to tht 16 year remission)  The flare I am having now is angry broken blood vessel flare.  It calmed from the first IV Rituxan... but It started up again yesterday before my second IV Rituxan..  I also had stomache pain (that has since gone away) and yes blood in my urnie)  The most important thing is that I have a team of docs that are wonderful.  The doctor that went through the bad flare with me retired about 10 years ago.  (we are still very close) She took the time out of her retirement schedule and drove to  my docs office to see me and give him her opionion.  She calls me everyday.  For this I am lucky and greatful.  

      Michelle

  • CanadaFarmer
    CanadaFarmer michelle7509

    Posted

    Hi Michelle,

    Hopefully everything works out and it goes away. I've had HSP for about 4 years now, and no remissions. I've been through steroids, chemo and immune sepressants. I seem to have doctors not sure what to do, and not willing to refer me further. I'd like to get this under control, but nothing has worked yet.

    • michelle7509
      michelle7509 CanadaFarmer

      Posted

      Canada,

      You need to google the vasculities foundation.  Depending on where you live they can put you in contact with docs that are familiar with how to treat this. There is a new med call Rituxan and is given through an IV for 6 hours.  This is want I am trying.. but I am not a doctor. You can also e-mail the Cleveland Mayo clinic.... they have an entire unit devoted to this. ... I know this disease sucks.  20 years ago when I was diag. there was no forum internet chats for this...let alone any info at all on this... I felt like I went through this alone..  but know there is so much info and place to turn for help.  You are your best adovocate..,.. no one will ever fight for you like you will fight for yourself. Don't take the words.... "I don"t know "... as an answer.

      Contact me if you need to chat

      Michelle

  • wendy92629
    wendy92629 michelle7509

    Posted

    Hello Michelle, sorry to here of your story about hsp. You said you were in remission for 16years. Now can I ask are you sure? Reason being it might be possible you had symptoms but didnt associate them with hsp? ie Lots of urine problems, infections cystitus, dry eyes, stomache cramps, joint pains legs, arms, hands, etc. lots of colds, coughs, being run down, nasal problems. Many of these problems can be related to hsp without the spots. Over the years we are finding out much more then we knew twenty years or so ago. Despite being a long term sufferer myself. I must admit its been like a jigsaw puzzle with myself and many health professionals piecing all the history and pieces together. Feel free to chat more about this. Hope this helps
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