Chronic Adult ITP patient need ITP Guru specialist

I am 55 years old, female ITP patient. I developed ITP 22 years ago at the third trimester of my pregnancy. After the initial first year of one IVIG, and several courses of prednisone, I have been living with stabilized range of 20-30 K, without any bleeding problems, and only been on Prednisone during this time about half a dozen times since for when my counts dropped lower than 10,000, but this past five months my counts seem to have dipped down to 1,000. My original hematologist who I adored, retired several years ago, and my new hematologist who I also like, started me in June on 60 mg a day for a few weeks and then tapered it really slowly in the course of three months, and when he downed my prednisone to 5 mg a day, my count dropped down again and to 7,000. My doctor then upped my prednisone to 20 four weeks ago, and my counts went up to 29,000. I am now on 15 mg prednisone with a count of 20,000. We are going to taper it off starting tomorrow at 10 mg again for one weeks, recheck my blood, and see what happens, and then decide upon other treatment.

Looks like I may have to make a decision now for the next step, for treatments I have never done in my 22 years of my chronic ITP. My choices are Rituxin, Nplate, or Promacta, or even spleenactomy. I feel that my docto maybe missing some important information about my special case, there are many possible triggers that I can myself think of, and like them to be evaluated before I feel confident about choosing the right treatment. Or I may want to keep taking prednisone for several more months to see if my body comes out of this hurtle by itself. Don't know how long I can be on low ( 10 mg pred.) without bad side effects. Just to note, I tolerate prednisone fairly well - some mild anxiety and mood swings here and there

Anyway, to be confident about the right decision of choice treatment, I need to get a second opinion from the best/ "guru" ITP doctor anywhere in the country. A doctor who is willing to look at my case and my medical file carefully, with patience, examine me closely, examine my blood on the scope himself, and who has a holistic approach of the mind and body to suggest the best treatment for me. Any suggestions of names for that ITP guru doctor would be greatly appreciated. I am afraid of doing any radical treatment, as I have been spoiled for the most part during this past 22 years, and really believe that given time my body will kick back again, as it has for the past 22 years. I live in Vermont, but am willing to travel anywhere to see this doctor and get a second opinion. Many thanks.

Mitra:

If you know your possible triggers, would you be able to eliminate them on your own to see if it makes a difference? Are you able to mention them to your current doctor to see what he thinks?

Staying on 10 mg's of Prednisone for a few months shouldn't cause any really bad side effects. I've been on that dose (and higher) straight for seven years and while I don't have any short term side effects, I am beginning to develop long-term side effects (such as bone loss).

There aren't many doctors who will investigate triggers; most people have had to do that on their own. I don't know of any holistic hematologists. If anyone else here does, maybe they will let you know.

I don't know if this guy still sees patients, but if he's semi-retired he might be willing to spend some extra time with you....although what you are asking for sounds like it'll take several hours, which most doctors can't do in today's healthcare climate.

Even if he just saw you for a regular length visit, someone with 30+ years of treating ITP and who still works at a teaching hospital is going to give you a good, informed recommendation.

www.med.umn.edu/hot/faculty/hammerschmidt/

PS...this doc actually wrote about Chinese mushrooms as a trigger for thrombocytopenia.

Thank you for quick reply. I have tried to eliminate possible triggers, such as adjusting my diet to be more vegetable base, eat more regularly and on time, exposure to chemicals as much as I can do by myself, including going on Gluten Fee diet, etc. They have helped my overall health, but not necessary my platelet count. There are however, other things I like to check, it is a long story, for example one maybe alergies, and another hormonal, which I don't know where to start to check this and my doctor doesn't know either. I had several miscarriages 23-24 years ago, and then went on progesterone to succeed in pregnancy, which gratefully made it a successful pregnancy, and as soon as I went off progesterone at third trimester, my platelet which was normal before dived down to 3,000 back then at 7 months pregnancy. It seems that now that I am in menopause ( as of two years ago), my platelets are acting again. I have hot flashes still and I feel that the stress of going to the doctor and the anxiety of dealing with the weekly doctors visits and lab test, puts my immune system in the extra defensive overdrive. It is a vicious cycle. It is so anxiety driven! I want it all to stop so, I can take a break from it and without use of harsh chemicals in my body as much as I can, so my immune system relaxes and corrects itself again. Historically, the more relaxed I had become dealing with my chronic ITP the quicker I had bounced back. Now, it is hard to relax with the weekly doctors visits and the anticipation of the test results are really exhausting me. Specially, since my doctor is scarring me by saying that older people are more at risk of hemorrhage. I am normally a very up beat and positive person and I really believe that auto immune is greatly influenced by it. Anyway, there are many, other triggers that it is hard to describe here. All the best, and thanks again, please feel free to add any other suggestions and insight you or others may have, and I wish you the best of luck and recovery from your ITP too. Just to note: The "name" was a typo. Sorry, It should have been typed as mitsamrich. Thanks

Great link! This is fantastic. I will try him tomorrow. Many thanks!

Tamar,

Just out of curiosity, how did you find out about this doctor, and do you or someone you know had a personal experience with him and his holistic approach? Thanks.

Have you checked for APS, antiphospholipid syndrome, in the UK sometimes known as Hughes syndrome? It causes miscarriages and often a low platelet count?

www.nhs.uk/Conditions/Hughes-syndrome/Pages/Introduction.aspx

mitsamrich99 wrote: Tamar,

Just out of curiosity, how did you find out about this doctor, and do you or someone you know had a personal experience with him and his holistic approach? Thanks.

I have not been treated by this doctor, but I go to the UofM clinic where he was on staff, so he was a "back up" when my doc was out of town at conferences or on vacation. He did a grand rounds presentation to UM medical students/residents on ITP about 4 years ago that was tapes and posted online while it was current. I watched it several times and got a good sense of his perspective on treatment. At the time he had several patients that he'd followed for 25+ years.

Sorry, it wasn't thrombocytopenia the mushrooms caused, it was decreased platelet function. You can read about it if you can get to the page (on Amazon.com) in the attachment.

Mitsa:

It seems as though there are other avenues to explore too - seeing an allergist and GYN might help with the other issues. As for anxiety, if you truly believe that it causes immune system dysfunction, counseling might help. Counts above 20k are usually safe counts, even at your age. The 50's aren't too bad as far as bleeding risk, and Prednisone helps with the strength of blood vessels.

Ann is right too...checking for APS antibodies could be helpful as far as treatment choices go. Anyone with ITP and miscarriages should be tested. 33% of people with ITP also have APS antibodies. I have had them also.

Mitsa,

I went to the PDSA conference and I think any of them would be great second opinions. I personally drive 4 hours away to the Cleveland Clinic and see Dr. mccrae. He is great!

Why not go for the Rituxan? I tried for a year to avoid it and used Predinisone to treat but at smaller dosages that I'm willing to live with my counts were always down well below 50. The Rituxan treatment for me was painless and without ANY side effects (other than pocket book ) so far and took my counts to 200+. Hoping it lasts as it has for some others but definitely glad I tried it now.