Severe case Nothing working

Today is sunday, last tuesday our nightmare began. My husband discovered a sore in his mouth on monday but thought it was from the nicorrette lozengers he was taking. Tuesday morning he went for his run as normal, but when he got home noticed red spots all over his feet/ankles, then went to work. Afternoon/dinnertime; was spitting blood (we thought from the sore in mouth),spots now covered his whole body, then came the bloody urine (oh he also had a bruise on his arm). We ate dinner then drove to hospital. He thought he was suffering from a flaxseed oil overdose (in shakes we started drinking sat morning 3 days worth). Any ways here's what they have tried so far:
initial platelet count = 3
next morning count=2
he has had 8 bottles of lVlg ( which finally stopped the severe renal bleeding)
6 platelet transfusions
we are on our 2nd steroid (doc said it was the big guns as far as steroids)
bone marrow tap on friday, won't get results until monday
AND WE ARE STILL AT ' 3 '
he is actively bleeding from the skin, still spitting blood (internally), bruising, and pretty much tired of the hospital.
Has anyone here had a really severe case of ITP?, and how long did it take for things to turn the corner? Nothing has worked yet to get him higher than 3 and it is going on day 6 now? Thanks if you can share any information on tough cases of this ITP. Carol

Hi Carol,

It certainly sounds like your husband has bleeding symptoms when his platelets are low. Many people do not. I know 3 sounds scary (and can be if one is a bleeder) but people can and do go to zero and still do okay. My son had zero platelets for 3 months and is alive today to tell about it, so it can happen. Six days is early on and it can take time for them to come up with what will work for your husband. Be patient, and you might want to cut back on the omega-3's as they do thin the blood and can contribute to his easy bleeding.

Best wishes,

patti

Carol:

Hang in there. I have seen some stubborn cases of ITP and they all ended up okay. It can take some time to see results. It sounds like the doctor is doing the right things so far, and there are still more options to try.

The flax seed oil could be contributing to his symptoms right now....that's a lot of oil! It's not so much the count that is worrisome; it's the symptoms. Hopefully, they will get that under control soon.

Carol, Sad you're going through this but glad you found us. Most of us were Dx with ITP without much warning and usually with no knowledge of what it is! Low counts are scary and and when the MD's explain it they usually say "you can die from this"! Well, yes you can but experiences here confirm the MD literature that it's a very low percentage. What they don't usually say it people live with low counts. As you undoubtedly know, counts < 10,000 (usually just referred to as 10) is when the MD considers dangerous. I hit 0 on my first Dx, platelets didn't respond a bit to steroids even the pulse protocol, Anti-D (7 rounds) and the IVig lasted two weeks before crashing. At that time there wasn't the range of Rx that are available today.

If you haven't yet heard the cardinal rule of ITP, what works for one doesn't mean it'll work for another and it's twin if it doesn't work for you doesn't mean it won't work for me. The "try it and see" protocol can be frustrating but remember rule #1 and it's twin. It's not that they don't know what they're doing, but rather there is no single Rx that works for everyone. They will usually try a tier 1 Rx, wait a while to determine its effectiveness, and try another as needed.

The other rule is ITP is not determined by a test, but rather the exhaustion of all other known causes of low platelets. That means the bone marrow biopsy, numerous lab tests, endless questions about foods, OTC drugs and health foods. Certain things are known to contribute to low platelets and could be a contributor. Let's pray for that cuz then you can stop consuming it and probably see a rebound! Regarding the bone marrow test, it wasn't difficult for me (had 2) but some say it's painful - perhaps varies due to pain tolerance which mine seems high.

Also there is no cure for ITP, unless his is caused entirely by consumed items. It which case you stop consuming and pray for a complete recovery. Otherwise the best scenario is remission and a return to "normal" platelet counts. Remission doesn't = cure, it means it's not detectable but you'll watch for signs - usually what we would initially think a rash but it's Petechiae. You'll learn the distinction soon.

The usual advise here is to educate yourselves about ITP. Some MD's don't seem to be very knowledgeable about ITP, but then it is a rare disorder. There are numerous stories here where they jump right to splenectomy but doesn't work for everyone and of course is permanent (I did it). Even some hematologists who specialize in blood issues don't have much, if any practical experience with it. Thus it is important for you and your husband to become educated. As much for peace of mind as to understand the medical speak that you'll be experiencing for a while.

Also this is a diverse groups of ITP experience - recent Dx to many, many years. Use us often for any questions and we'll do our best to educate, assist and guide you on your journey. Because of our worldwide reach responses will generally be very quick.

Carol, Iknow how you feel. I went through the same thing last July--though I didn't have the severe signs of bleeding like your husband does (could be the flaxseed oil). I was in the hospital for two weeks with platelet counts of 1-4000. And, nothing seemed to work. After having IVIG (3 rounds), I finally left the hospital with a count of 12000; only to return within two weeks with a count of 1000. Finally, I started to get better and my body started to heal. But, it does take some time and patience. And, like Steve mentioned, what works for one person will not always work for another. Do as much research as you can and have him watch what he eats--especially until he gets better.

Good luck to both of you and hope his platelets come up soon.