ITP and Hemolytic Anemia

Today I got diagnosed with a relapse of hemolytic anemia. Last week I was so happy because I was off prednisone and platelets were high. This was the first time I did not have my platelets fall when the prednisone was tapered. So that was because my body was busy making antibodies to my red blood cells and stopped making them to my platelets.

Over the years there have been some other people on this site with hemolytic anemia. Apparently 20 percent of people with hemolytic anemia have ITP, but not the other way around, it is rare.

So anybody else in the same boat with me? I am trying to keep a positive attitude, am bAck on 30 mg prednisone. So at least I will have a clean house again when I go into the prednisone mania.

Hi Dru,

I also developed hemolytic anemia after a round of IVig for my itp. They aren't sure if it was a reaction to the IVig or just another illness that decided to pop up. After a 4 month stay in ICU and 74 blood transfusions later they finally got my hemoglobin up to an 8. Lowest was 1.6. I was treated with prednisone, rituxin, Solaris, hemodialysis, and plasmapheresis. They kept my counts up after i got out of the hospital with Folic acid. It helps with production of red blood cells. I've also been trying to find someone in a similar situation. You are the first I've heard of. Try the Folic acid if you aren't already. I do 5mg a day. It's prescription strength so your hematologist would have to give you a script.

Hope I helped a little

Sorry to hear that, Dru. I remember Audi telling us all the time that a lot of people with both ITP and Hemolytic Anemia had the 'see saw' affect. If one went up, the other went down. I hope you can get both under control soon.

30 mg's isn't too bad. Good luck and if you're up in the middle of the night, write us a funny poem or something!

Can you please come and clean my house! My bf asked if I can take some prednisone every once in a while so I can get this place clean and organized. When I was on it the house was immaculate!

Hang in there! I hope both counts go up!

Sandi,
I remember that Audi had hemolytic anemia as well as lupus and ITP. She always had such a positive attitude.

Hopefully the 30mg will help. M...maybe will be able to think up a ITP and AHA jingle.

Acarrerow
Looks like you had a terrible time with it. I can't imagine 4 months in the ICU. 74 transfusions, wow that is awful.
I was diagnosed in 1999 after months of feeling awful and doctors thinking I was just having anxiety and stress. I finally ended up in the hospital with hematocrit of 17, I did respond pretty quickly to prednisone but hematocrit always went down when steroid was tapered. I had a splenectomy and was fine until 2005 when I developed ITP. This is the first time the AHA has relapsed.

I saw my hema doc today and she gave me preds 30mg, ranitidine, folic acid. My hematocrit was 32 today so I am not too low yet.
My doc always reports hematocrit so I don't know what hemoglobin was. I remember before she gave me folic acid as prescription. Maybe she will give me that next week. I caught her off guard today, I did not have an appt but called in cuz I knew something was wrong.

So how Are you doing and feeling now? Are you in remission?

Valerie,

Thanks, I could probably clean your house and a few others too tonight

Acarrerow

So is the only treatment you are taking now folic acid? I will ask my doc for a prescription strength of it. I might need to take iron. So far the 30mg prednisone doesn't seem to be doing anything, I'm not even manic...no clean house . I'm pale and tired without energy.

I also have both HA and ITP. The two conditions usually work in a see-saw for me. Only once - in a terrible combination of things caused them both to act up at once. I got my HA in 2006 after we bought a new mattress. I had a relapse a couple of years later. When my HA is active, I find it hard to do much but rest. The only treatment I've gotten for HA is Pred. They did also give me a script for 5mg of folic acid, but the way they explained it was that during an HA flare, your red blood cells explode, and since they carry folic acid, you need extra. But it was never given as a way to keep my rbc up. Also I have to get B12 shots every 2 weeks. HA also depletes you of B12 - I got terrible electric twitches, and that's how they found out about my B12. I also take iron every day - Floradix - it's a liquid and it's the only thing that's ever worked for me without killing my stomach.

Hi,
I remember you from the old board, Jill, right? I was thinking of you when my HA came back as you were one of the few here that had both like me. my user name was different something like deedee, I forget.

I just relapsed last week with HA, after a bout of ITP that started in February . I've never had them so close together.

I'm on 30 mg pred but my hemoglobin must still be low, I dragged myself to work but don't have much energy. No manic cleaning like I had with ITP.

I take floradix too, same with me for stomach problems with other iron. I will see my hema weds and she is going to do an iron panel, and I remember taking b12 and folic acid too.

Yes the only thing I'm taking right now is Folic acid. My counts have been good for 8 months now. I developed hemochromatosis (iron overload) due to the transfusions. My counts are in the 1200's when they are supposed to be 250. So absolutely NO IRON for me. I have a prescription multivitamin that I take that contains no iron. I developed 2 life threatening aneurysms that have been treated. So now the main focus is the iron overload. My liver is 3x's the size it should be and I have a heart condition now because of the iron. My hema won't call it remission until I hit the 1 year mark and that will be in August. My platelets have been steady at 200k and my hemoglobin at 11 so fingers crossed Research and find anything you can to boost red cell production. Since I'm not allowed to take anything....not even Tylenol I've really depended on certain foods to help out which is kind of hard to do also since everything has iron it in!

Acarrerow,
Glad your counts are stable and you are doing well. I am hoping to be able to keep my hemoglobin at 10 or more with just a little prednisone. That is too bad about the iron overload. I have never had that problem, mine tends to run on the low side of normal because I've never been much of a meat eater. I think I will be on floradix and folic acid for a good while. My doc is going to test ferritin, and other iron counts tomorrow. I have a lot of parethesias when the hemolytic anemia is active and have milder ones when itp is active. They drive me crazy but guess it is good because it gives me some warning that I need to go to the hema.

How strange to have parethesias when counts are low. Cold weather and too much sun cause that for me. These bodies of ours! Trade them in for new ones~

Yep, I'm an old timer here. My platelets were down to 36K today, so I'm glad I went - I had a feeling they were in the 80's given the bruises, so I really need to never ignore the feelings.

I forgot to ask about my hemoglobin -I've been absolutely exhausted all the time.

About your parathensia(sp), I got numbness and muscle tics during a relapse of the HA. We eventually related that to me being not able to process the B12 on my rbc that were being what my hema called, "Exploding red blood cells". A combo of Pred and B12 shots made those go away for me. Those muscle tics were like - an electric jolt through my body - like when you're falling asleep and wake up suddenly and all your muscles jolt? Thats what it was like. And walking along and feeling like you were going to fall down - not dizziness, just a complete feeling of thinking you're going to fall. Weird, I know. I didn't drive during that time, because I didn't trust myself.

So I'm here to re-join the Pred club. We're starting at 40mg and seeing how it goes in 2 weeks.

I've had that too on and off....feeling like you're going to fall. I actually have fallen a few times. I lose my balance a lot. My co-workers used to ask me if I were drunk. Don't know what causes that, it just happens.

Two years ago, my husband and I went to a guided cavern tour. We had to follow a clay path, some of it downhill. Everyone else was trudging along, and I was taking baby steps and hanging onto the wall. I have no idea what that was about. I'm not normally a sissy.

Sandi,
Yes, our bodies really make life an adventure.

The parathesias drive me crazy, plus everyone except my hema dismisses them, like I'm making them up.

Popper

Welcome back to the pred club. Hope you do okay on the 40mg pred. I'm okay on the 30 I'm on and parethesias have decreased a bit finally today. I sometimes get that jolt type feeling but mostly it is a creepy crawly tingly feeling all over. Sometimes my legs feel like they are vibrating, sometimes feels like a burn and sometimes like I have on scratchy wool, very hard to describe. My hema thought it could be related to B12 but the shots or daily tabs don't make any difference. When my counts go down I get them.
But tomorrow I am going to ask the doc about B12 again.

Dru:

When my ferritin was low, I had that creepy crawly skin thing at night. It was like RLS but affected my entire body. I wanted to crawl out of my skin and flopped around for hours. I couldn't sleep more than 3 or 4 hours for 2 years. Rheumatologist and Neurologist never thought to check ferritin levels and just told me it was Lupus-related.

When I found out I had low ferritin (just by chance, I asked for the test), I researched it and found that it can cause RLS. I started taking iron and within 2 weeks, it all went away. I was ready to put myself to sleep every night with a brick.

It just amazes me how one thing can be off and you suffer for so long until it's discovered. There were so many articles about RLS and low ferritin. You'd think my Neurologist would have been aware of that.

Sandi,
It is a weird, awful feeling. I feel like many docs just dismiss that symptom, to them it is one of those vague symptoms. But when you have something like that it can affect your sleep and how you feel too. For me it is like my body is screaming "something is wrong"!

My doc says that low ferritin can cause that. I'm getting it checked tomorrow. Think I will be giving up lots of blood as she said she is gonna check some other stuff too.

It was just such an easy fix and it was so overlooked. Taught me to look for the simple explanations first! I was getting to work late all the time because I didn't fall asleep until 3 or 4. Good thing your doctor knows about it. My daughter had the same problem and found out her ferritin was low.

I had my hema appt today, hemoglobin went up to 11 from 10. My platelets went from 434 last week to 198k this week. My white count was very high. She didn't seem concerned about that so I won't worry. I have to go down to 25 mg prednisone for the week and back to weekly blood draws, darn I was liking the every 3 wks appts. She was happy with the results, she did an iron panel and gave me rx for folic acid.

Dru,

I just got caught up on your post! We have you in our thoughts here! But, just a reminder, I asked about the house cleaning waaaay back! I should be first in line!

Keep me posted!

Jeffrey

Not bad news. 198 is very respectable! Fingers crossed it doesn't drop more!

Jeffrey, sorry no manic housecleaning with prednisone this time. Too tired with the lower red blood cells.
But I did get a little crazy and cleaned out all my email and took stuff off my computer.

I'm glad your counts were up! I'm sad that you have to join the weekly CBC club. I have been a part of it since December.

Today white cell counts were 12,000 down from 18,000 last week. I was glad of that because I was having trouble following Sandi's advice "don't worry unless the doctor tells you too".

My platelets are too high again 494k up from 198k. Not so good really...... I think the hemolysis of red blood cells raises up the platelets. I think that is something like the way win ro works. My hemoglobin is still low but better at 11.2.

On my blood test printout, Out of 15 blood items checked, 10 were either too high or too low.

Now I am down to 20 mg prednisone.

I feel pretty upbeat and glad prednisone could be decreased. I may have to stay on it now all the time. The doc says we have to find the lowest dose possible that will keep the red blood cells high enough for me to function.

HI Dru!

Just wanted you to know I was thinking of you. Hang tough! We will all get through this stuff.

Jeffrey

Dru:

I never have a CBC with everything within normal limits. It's been years. I usually don't worry at all. There was only one time when my lymphocytes were flagged as 'critically high and atypical' that I did worry. I was also feeling horrible at the time (weeks) so I knew something was wrong. My platelet count also dropped to 60k during that time which isn't bad at all, but it was in the middle of Rituxan remission which was odd. They did rebound on their own. Anyway, I swore I had CMV because of the symptoms and strange CBC results. I spoke to my hemo and he told me not to worry about it. I told him that I thought I had CMV and he said "well, we wouldn't do anything for that anyway". Maybe not, but it would have been nice to confirm because I might have been able to stay home from work for a week or so.

A few months ago, my Rheumatologist was concerned about my white count and told me that it seemed indicative of lymphoma. She wanted me to call my hemo for an appt. I did, and had a week and a half to wait. I was concerned, but really did not lose sleep over it or dwell on it. I figured the hemo would tell me it was nothing to worry about and that is exactly what happened.

You get enough of those scares and you quit worrying. Someone will tell you if there is something to worry about.

I hope you get the AHA under control soon. That in itself is enough!

Thanks Sandi,

I was a bit worried about that high white count, but not too bad. Having the hemolytic anemia relapse was enough of a worry, but I'm managing it fine so far.

I never worry about all those other abnormal blood results, mine are always screwy.

The hemolytic anemia can be a bit hard on me, even a little bit lower hemoglobin makes me feel tired, but I have been able to keep working. My doc mentioned possibly trying rituxan for it. Since my ITP responded well to that maybe it'd work. There was 1 research paper about it I read.

Thanks for your support, it is nice to have people here to vent to. My friends are supportive and helpful, but most of them dont really know what a platelet is And they really don't get it about the hemolytic anemia.

My platelet count today was 262 down from 600 last week. I guess for once am happy to have a drop. My hemoglobin a little low at 11 and there are still signs that I am breaking down my red blood cells. But it seems stable while on 12 .5mg prednisone. I'm staying on that amount this week as I am going on a trip to see my daughter in DC. Next week will go to 10mg and see what happens.

Good luck Dru and have a good trip! My daughter is moving this week from DC to San Diego. I'll miss her....too far!