ITP and Hemolytic Anemia

I hate to say it but it is stories like your that make me grateful my only problem is low platelets. Hope things settle soon.



until than work sleep eat sleep. That is what I do to conserve energy!

Hi Dru!

It sounds pretty good for you! I am happy! I am very happy that you get to go see your daughter. I miss mine so very much. One in southern Indiana and one in Atlanta...

Sandi, hang in there....

Julia, baked anything lately????? Cheesecake is good for people with low platelets... I read that somewhere...

Jeffrey

Thanks, feeling okay and ready to travel! Can't wait to see my daughter and a couple friends I have in the area. Some good restaurants await, no cooking this week.

Glad to hear you are feeling okay. My son had the opposite problem. When he stopped Prednisone for Hemolytic Anemia his platelets crashed a couple of times. He does well on low doses of prednisone for HA, like 5mg every other day or less. I guess I got a little too comfortable with the steroids though. He was on them almost 20 out of 24 years. He had a 4 year remission with Rituxan 2006. Relapsed March 2011. He received Rituxan again in March of this year and got off prednisone two weeks after. He feels good and Hgb is 14 to 16. MD is keeping him on Cellcept because he still has a high retic count {percent of new RBC's]. White count often goes up with steroids. Just out of curiosity have you ever had enlarged lymph nodes and spleen? Enjoy your trip. Joan

Thanks Joan. It is stories like your son's that make me feel like I'm not alone! Not so many people with both. It is like a roller coaster and see-saw too with red cells and platelets going up and down.

In June 1999 I developed hemolytic anemia, I had a splenectomy in June 2000 and have been in remission from the HA since then until May of this year. My spleen was not swollen and I never had swollen lymph glands except for times when I have had an occasional sore throat over the years. I developed ITP in 2005. In Feb this year my platelets were at 4K and gradually went up through the prednisone taper from 60mg down to 2mg. One month later I developed HA again .

Like your son, I am fortunate to respond well to steroids for both ITP and HA. I also had a 4 1/2 year remission from ITP after Rituxan. So, my hema is hoping to get me stable as far as red blood cells on the lowest dose of prednisone possible. I'm tired of the side effects of my present dose, 12.5 down from 30.

I think you are right. My mom and I went on our yearly trip to Cheesecake Factory Saturday and my counts were 174 tues...def cheesecake induced! Could you imagine if that was true? Itp would be delicious to fight!

Hematocrit down to 26. I look and feel awful
Back to 20 mg pred and rituxan Friday.

Dr offered a transfusion but I said no. Hope prednisone will kick in. Lying around on couch, watching MLB.com, all those players on steroids!

Dru,

I am sorry.... I would help you with it if I could. Send me half of it ok? When do you go back to the doc?

Jeffrey

Dru,

I'm sorry to hear that . My platelet count was low today and I'm also wanting to lay on the couch. When do you go back to work? I'm gonna have to suck it up and work tomorrow. Here is to better counts for both of us!

Just to chime in a bit, I have been cutting and bleeding very easily lately and we know what that usually means.

We are all just a HOT MESS! LOL

And I am so proud to know you all!

Jeffrey

Thanks Jeffrey, we are all a hot mess!

Valerie,
Sorry you have to go to work. I have gone many times with low counts. It does take some sucking up and I have fatigue with low platelets too. Also I tend to be very much more careful. The only time I ever got hurt at work was when I was reaching in to a fridge to get my lunch and bumped my head on the freezer door, big bruise. Lol after all my docs worry about my getting hurt by the kids.


I have to go back August 26. Will be either home on the couch or at the hemas till then.

Hope you feel better soon Dru... and do get to have some time to enjoy before going back to work then...

Just an odd thing and maybe being new here I am wrong but it seems to me there are a number of people active on this board who are teachers and in summer holidays, I am also in that same boat... Teach at a univerisity.... Sucks "wasting" the summer vacation you work so hard for being sick and resting! But I find it curious and am just wondering from you all with experience, do you find your ITP is worse then in the summer or is it coincidental? Is it from finally having time to relax and it flares?

It is weird. The timing of my initial ITP and relapses all started in February. They happened right before our feb vacation usually around the 15th of feb. I spent feb vacation in 2006, 2011, and 2013 at the hema and on high dose prednisone. In 2006 and 2011 I did rituxan in the summer just in time to start school again in sept.

For me I thought the ITP was brought around by all the viruses and flu that seem to peak in February in my school which is preschool through grade 2.

MommaBee wrote: Sucks "wasting" the summer vacation you work so hard for being sick and resting!

Believe me, it sucked even more having to keep working with low counts and treatments and not having any time to rest at all! The grass is always greener.... :silly:

Yes it sucks having to go to work with low counts - I own a retail store open 7 days a week and now with the economy the way it is - I work 7 days a week open to close - not that I am complaining - just venting - glad to have an income - I have to pay for insurance you know :woohoo:

Cindy Ann

Today my platelet count is down to 30K, still it is high enough not to have to treat

Definitely true that is better to be on vacation and feeling sick then working and feeling sick never a "good time" for it so didn't mean to sound like complaining! Much luckier to be abjle to rest when needed then not! Very true Sandi that grass is always greener! If only we could all just not work but get paid and feel fulfilled in our days

Dru that is interesting the timing of your onsets! And does make sense with that viral load around you then!!! Just find it curious how the slow down part of work life as a teacher effects us as it is such a drastic change in lifestyle! I personally teach in university so it is a bit different (and a bit less virus exposure with students who all know to wash their hands) but the hours are intense in the school term and for me this all came on as soon as I slowed down! Hope you get some non-fatigued vacation time though!

Am dreading not so much the return to work as I am working somewhat now but more dreading teaching lecture classes on prednisone! The students thought I talked fast before!!! Yikes!!! But also very thankful my job is not too physically demanding for those of you who do physical things must be tough!!! And Dru and Val, Natalie- all of you who teach the children yay for you! I am amazed with your ability to do that and maintain patience with the young ones... I am struggling with patience with my own children never mind a whole room full!

Dru Feb 15th day after the 14 do you eat chocolates?? another possible cause!


Jeffrey: Yea didn't you hear I baked myself :evil:

MommaBee: I wish you would of been my pharmacology teacher in school. It took everything I had just to stay awake. She talked on one tone level and at the same pace. I would of loved to had someone on pred those 3hr lectures would of only been 1 1/2 hrs!

Think about it this way your students will learn real fast on how to pay attention or put up their hand to ask you to repeat yourself!

Julia...it never occurred to me that it could be chocolate, how cruel that would be. But, I eat chocolate a little bit almost every day. So lucky I don't think it is that. Maybe it is something about all the crazy valentines day parties we have at school that sends my body over the edge?

Momma bee
Much easier to maintain patience with students as a teacher than as a mom with your own kids. You know you can send them home at 3 everyday. With your own they are with you forever!

I agree with Julia, teacher on pred is just what these high tech short attention span kids need.

Back in the day of reel-to-reel tapes I had a professor who spoke very slowly, and his lectures were available in the language lab on tape at 3-3/4 inches per second. I never went to class, but listened to his tapes at double the speed at 7-1/2 ips (he sounded like Alvin and the Chipmunks!) and I was done in half the time. Prednisone without side effects.

Laziness is the father of invention!

Finally after weeks on my couch on 20 mg prednisone with low hematocrit at 26 I have improved and feel better. Now up to 37. Went back to work this week and it is nice to feel like a normal (but very tired) person. My immune system seems to be calming down a bit after rituxan and now on 12.5 mg prednisone. Still can't sleep well on that amount.

My platelets were in the 600k range last week and this week were 372k, for once I am happy for a platelet drop.

I hope this is from Rituxan so that I will be able to get off prednisone. Otherwise I will just have to stay on it and add something like cellcept or cyclosporine.

Dru,

I am glad you are doing well! I worry about you ya know! Take a little extra prednisone and drive west to Indiana! LOL

I am glad you are getting back to normal! I hope your family is all well!

Jeffrey

Last weeks blood counts put me in remission from ITP and at least partial remission, good response, from hemolytic anemia following rituxan in August. Finally now off prednisone for the past week after 9 months on it!

So, am very grateful for that.

But when I saw my hema last Tuesday she took one look at me and ordered more blood tests; lupus panel, sojerns antibodies, and another skin disorder. As I've gone off prednisone I have had a lot of skin reactions. I can't have the blood tests for a few weeks as the prednisone can skew the results.


For now I'm just enjoying being treatment free!

Yikes, Dru! If it's not one thing, it's another. I hope the tests turn out ok.

Hi Dru!

I am sorry to hear all that! Well, I will talk to Santa for you ok? I don't know what else to do. You rest up and chill. You working?

Jeff

Thanks Jeff and Sandi,

Really, I'm not worried about those other autoimmune diseases. After making it through the mess of the last 9 months I feel like I can just deal with whatever else is wrong.

I'm feeling pretty good, working and getting ready for Christmas. I'm just happy to have some red blood cells and platelets too . I'm ready to get back to some exercise too.

Good for you Dru!

What are you going to do for exercise? Walk, run, aerobics, etc? AND, what do you want for Christmas?

Jeff

Great attitude, but Lupus took me totally out of commission. I can no longer work or have much of a life. Everyone is different though, and it doesn't affect everyone that way.

I know it's been rough, Dru - I hope it only gets better from here!

I'm sure if I have lupus I will be out of commission too. I hoping my test results will be fine. I think a lot of the symptoms I'm having are from prednisone withdrawal... Rashes, joint and muscle pain, eyes are swollen, fatigue.


Jeff, I'm going to go back to doing some exercises a PT gave me. Believe me, it's nothing like what you do!
I have 5 pound weights for my arms, then some balancing. The whole routine is just 15 minutes. On days I don't work I will walk my limpy dog. We are both in bad shape. On work days I get plenty of exercise working with my students.

Dru,

I am proud of you for doing anything! You gals are tough, and I mean that in the best possible way. I am currently struggling with my own workouts. I have taken almost 3 weeks off trying to the swelling out of the right knee. I am going to try to work it tomorrow and then maybe, just maybe run a race on Saturday. I have to defend my medal from last year!

You do what you can and stay with it. It all adds up! Keep me posted on how you are getting through this latest batch of fun!

Jeff

I hope it's the Prednisone! I have my fingers crossed for you!

I don't understand why you'd get rashes though. Maybe old allergies coming back?