How long/how many meds to try before splenectomy?

I was diaganosed with ITP 12/16/11. I was admitted to the hospital with a platelet count of 5k at that point and was in for 6 days receiving blood and platelet transfusions and IV prednisone (I don't remember the dosage) I have now been on a dose of 80mg/day of predisone since then with the exception of 1 week I was dropped to 40mg after reaching a count of 170k. Then it dropped back to 70k and I was back up to 80mg. I am now at 155k and dropped to 60mg/day. My doctor suggests meeting with a surgeon to discuss splenectomy if I drop below 100k as of next week. What are any other thoughts out there? I am ready to be off the prednisone but unsure if splenectomy is the answer. I am 32yrs old and read it's more successful at a younger age but I fear the lifelong problems with infections without my spleen. Any input is greatly appreciated! Thanks!

Hayley:

My first thought is that it may seem like ITP has been with you forever right now, but you haven't even been diagnosed for a month. ITP is sometimes acute and it can take 6 to 12 months to determine that. It's way too soon to consider splenectomy. There are quite a few other options to try.

Going under 100k isn't a big deal. Keep reading and learning. Become as informed as you can before making any quick decisions. I wouldn't get the surgery done just to be able to get off of Prednisone. You can get off of it without the splenectomy.

it will be YEARS before i will even consider considering having my spleen taken out. Too many "doctors" treat the symptoms and not the problem. I was told 13 years ago to have mine removed, and said no. i enjoyed a 13 year remission. "they" will tell you a splenectomy will work for 70% of the people who have it done, but, question your "doc" about how many of that 70% will have a permanent recovery, and you will find that 70% drop to maybe about 40%. Prednisone does nothing for me, IVIG gets me from 1-3 to 160, but lasts for maybe 2 weeks. i am trying danazol - and natural remedies - thats what worked last time for me. once you remove your spleen its gone! why remove a perfectly good organ, when the problem is the immune system is confused. i say fix the problem first. Any meds are trial and error, and many take time to work. hang in there, im sure you will be fine. give it time, read the posts from others, some good, some bad.

Hayley, What were the symptoms that led to your diagnosis? I wonder how much experience your doctor has with ITP. Most of us are not hospitalized, even with counts of 5K. Many of us don't treat at all if we're above 50. (My doc feels 25K is safe for me--without treatment.) The more you read about treatments and about others' personal experiences, the more prepared you will feel in making decisions about your own treatment. (I am a failed splenectomy, incidentally.)

As far as I know my dr. has seen alot of ITP. She has been in practice for 20 years. I'm currently being treated by an oncologist/hematologist. My sypmtoms were bruising, alot of petchiae (arms/legs/stomach/face) blood blisters, blood in my stools and spontaneous bleeding of my gums and nose over a period of 3-4 weeks. I had seen my family dr and a GI dr-had a colonoscopy, neither dr. mentioned ITP or even did blood work. Then my period started and after bleeding for 7 days heavier than after childbirth I called my ob and she did bloodwork and that's when I was admitted for transfusions and to get the bleeding to stop via high dose of birth control. My platelets were 5k, RBC 2.92 and hemoglobin 8 at the time of addmission. Under the care of my ob and the hemotologist. I've had a lot of scans and no cancers/lupus/leukemia were found, including an ultrasound of my uterus. Now my period started again despite still being on the birth control-8 days in now but it's mostly spotty. I am afraid that it's just going to stay until I'm done with the birth control in 6 days and go crazy heavy again though. With the period still coming, has anyone had any experiances like that and should I have some further testing done on my uterus/ovaries etc to see if there is something related to that causing my blood/platelet problem? Or would something have shown up on the ultrasound or bloodwork to indicate an issue there? I'm not sure I'm ready for splenectomy but I also feel that I can feel the difference in myself when I drop below 100k, before I even know what my numbers are.

It is FAR to soon to be considering a Sleenectomy!!! There are many other treatments. You are only a month into this Rollercoaster. It may just be an acute case of ITP. Have you had a bone marrow biopsy?

I have not and wondered if I should even with a lack of signs of leukemia. My WBC spiked to 25 and are now at 18-I'm told is caused by the prednisone.

A bone marrow biopsy can check for other blood disorders. Platelets are made in the bone marrow. A disease or condition that involves your bone marrow such as Leukima and some types of anemia could lead to the number of new Platelets produced. Viral infections may also affect the number of new Platelets produced. I would consider having a biopsy.

It is not normal or necessary to have a bone marrow biopsy. ITP can be diagnosed without it so don't worry about that and the fact that your count responded to steroids is pretty good confirmation of ITP. I also can't think that anything wrong with your uterus or ovaries would cause ITP and it's usual to have period problems with ITP. If that continues you could try other things to stop the bleeding. I'm too old for that now so don't know the specific drugs available.

I agree with your doctor that if slowly weaning of the prednisone causes your count to fall then you should come off it and try something else but it wouldn't be splenectomy for me. There are lots of other things to try including the new TPO drugs, Nplate and Promacta.

By the way it is usual for white count to go high with prednisone. Apparently the white cells that are usually stuck to the vessel walls out of sight to a blood test come flooding in to play when on steroids so the count will be much higher. It's called demargination.

A biopsy is not absolutely necessary but it does help rule out other possible causes of low platelets/blood disorders, cancers. It gives a detailed picture of the types, amount and condition of forming blood cells. That is how my ITP was diagnosed.

Just my two cents, but I've never had a BMB done; my doc didn't think I needed one and I never questioned his answer. Everyone is different, even the doctors we see. Even when I was at 3, I wasn't admitted to hospital.

Lots of questions.

First, according to protocol, a bone marrow biopsy is not necessary unless the patient is considering splenectomy or is over the age of 60. If a patient isn't responding to any treatments, that might also be a good reason. In the 14 years I've been on the Forum, I have only seen two people get abnormal results. It's very rare. Some doctors do it as a precaution and there isn't anything wrong with that...it's just an invasive procedure that may not be necessary. I agreed to one when I was diagnosed because I didn't know any better. While I didn't find it traumatic in any way, if I'd known I didn't need it, I wouldn't have had it.

Treating at counts above 25k or 30k only leads to problems with more side effects/damage to the body. It adds up over time and you don't want to pound your body with treatments unnecessarily. People can hang in the 30's, 40's or 50's for a very long time and be just fine.

As for periods, I had the same problem with very heavy ones. I remember being at work and leaking so much I had to change pads every 1/2 hour. I was given Depo Provera until my counts went up and it stopped the period within 2 days. I only did that once though, the other times I just winged it.

There is so much research out now about other potentially serious problems that splenectomies can cause besides infection. If you are interested, I can give you some articles.

Prednisone can make white counts rise. Try not to stress over CBC's being out of whack unless your doctor tells you there is something to worry about. I can't remember the last time I had a normal CBC. I always have a lot of things out of range.

You'll find your comfort zone in time. Just try to relax (which is hard to do on steroids, I know!) ITP is managable and it is survivable. Most people do attain remissions; it just takes some patience.

My dad just had a severe onset of primary ITP on 11/27/11 where he was hospitalized for 48 days. His hematologists pushed hard for splenectomy. He is over 60 and we didn't feel it was a good fit or made sense with so many other treatments available, including platelet production stimulating drugs (Nplate, Promacta).

My dad is scheduled for a ITP specialist at the end of the month for a second opinion and review of his case. From our experience, having a doctor who specializes in non malignant hematology is important, as many oncologists/hematolgists don't deal with blood disorders nearly as much as cancer.

From the International Consensus Report on ITP:

Depending on the clinical setting, splenectomy is deferred in most patients for at least 6 months. This may be due to patient preference or other active comorbidities and to the understanding that spontaneous improvement or late remission may occur 6 to 12 months after diagnosis; indeed, some patients may spontaneously remit even years after diagnosis.

Thank you all for your input. I am willing to try some other medicine options prior to splenectomy but what should I try next if the prednisone doesn't work? I was on 80mg/day and when my platelets went to 170k I was dropped to 40mg/day and my numbers dropped to 70k within 7 days. Back up to 80mg and jumped up to 155k. I was 155k this past week and dropped to 60mg. I'm having a horrible time with the prednisone, my face is so swollen I can see my cheeks out of the corner of my eyes and have a hard time sleeping more than 2-3 hours/night. I have 2 kids and home plus 1 that I watch during the day ages 7, 4, & 3 and it is so hard to keep up with them right now. I'm either jittery and restless or passing out tired all day long. I'm hopeful to find a comfort zone but losing my patience.

Hayley - we've all been there. I remember thinking every single day that I could NOT get through another one. I thought the high doses were bad until I started the taper. For me, that was even worse. Sheer exhaustion. Every night I would fall into bed and I remember thinking it was even an effort to lay down. I would tell myself that when that alarm goes off, I will blow off work and take a day off. I never did. The alarm went off and I rolled my arse out of bed and pushed through. Got done working at five and flew home. Kids ran out the door and got in the car and off we went to their various activities. Got back home around 8 or 9, did the homework thing, made dinner, did some house work and got to bed around midnight. Yes, I was losing my mind. My husband travels all the time for his job so he wasn't around to help. I never thought I'd get through it, but I did. I can even laugh about it now.

Somehow, you keep going. Take one day at a time. Prednisone and its side effects can go on for months. There will come a point in time when you will know that you've had enough. That is when you bring up the possibility of another treatment with your doctor. A good hematologist will help you explore your options and will not pressure you into any one treatment. He should be aware of all of the treatments and be experienced with them. I actually did my own research and made suggestions. My doctor was always open to what I wanted which was good for me. My body, my life.

Hi Hayley,

I was in the exact same position as you were three months ago.
And rather than considering to have a splenectomy which is a way too soon at your stage right now, please give a natural treatment a try first.
Because natural treatment works for me, I've had a stable and normal platelet for a month now, without any prednisolone or any other medications. What I did was:
- healthy diet: please google under macrobiotics/ alkaline diet
- light exercise
- energy healing: please google under pranic healing
- meditation
- and a good rest
- (all these need to be done at the correct dosage and frequently)

Just send me a message if you need more info. Get well soon Hayley!

Thanks again to everyone for their input. I have done some reading and reasearch on dietery changes and whether they work or not, it can't hurt right? So I have already made some changes there. I'm definately not ready for splenectomy, I'm hopeful on Wednesday my platelets will be up and I can continue with my current course of treatment for now, no matter how little sleep or swollen my face is;)

Hayley - I know it's awful. Do you remember Jerry Lewis when he gained so much weight? That was Prednisone.



I don't know how long he was on it, but I remember reading that the condition he had to treat required months and months of high doses. AT least with ITP, there is a little more leeway.

Way, way, way too early, and your counts are way too high to consider splenectomy. Just my opinion.

You are still early on prednisone. Play with the dosages and types. It does appear to be increasing your counts, which is not something to sneeze at. If you want to try something else, most people would go to Win Rho or Rituxan next, or one of the newer options like NPlate.

Wow, I didn't know that was the cause of his gain but I do remember seeing him and wondering.

Also yesterday my platelets were up to 345K!!!!!!!! Prednisone cut to 50mg/day 30am & 20pm. I am so excited!!!! Thanks everyone for your help/advice/support!!!!!

Good luck to you Hayley!!! Sounds like you are doing really good. Try not to worry too much. And, try not to think about having a splenectomy. Just my opinion.

Great counts! That is one very good response!

Dropped slightly from last week to 315k but still good! Cutting back to 40mg/day of prednisone and hope it stays up next week!

Good luck Hayley. Your counts are holding really well!