considered "responding" to prednisone?

Sorry for all the questions, being new I find I have many! I am trying to wait patiently to see the hematologist to get more info and find out my results of all the tests but am stuck waiting until June 7th which isn't that far away but is far enough for my sleepless nights with the prednisone and over-analyzing and researching everything! Anyways... What I am perplexed about, is trying to figure out if j am considered to be "responding" to prednisone or not.

April 28- platelets 16 and had ivig and started prednisone the next day, Within the week platelets up to 211 but back down to 60 within a week of that. They seem to be in the 50s now. I am still bruising, nosebleeds and petticia but not as bad the past few days. Even was unfortunately rear ended while driving today and no new bruises I see so that was "lucky". My question is related to the platelets in the 50s and if in your experience that would be high enough to be considered "responding" to the prednisone? Is that a high enough of a response? Will they still consider weaning the prednisone since it will have been over a month on 70mg?

Overall keeping myself calm and trying not to stress but trying to make sure I know what i might need to know.or expect when I get to see the hematologist again!

Thanks again for any thoughts/advice!

Something brought your platelets up, but if you are on 70mg pred and they are dropping, it is possible pred is not the right treatment for you. It is the least expensive treatment, and the easiest for patients in terms of it being a pill and so easy to take, but it can be very hard on your body.

You are in what is typically considered the safe zone in th 50s, but I would not hesitate to ask to be weaned off if you are concerned about long term effects. See what your doc says.

FYI, I took a nasty fall this morning while jogging, and I went to urgent care when my chin wouldn't stop bleeding. It was more of an inconvenience than anything dangerous....and my platelets have been right around 40K for several months. So...life goes on, I got my chin glued and will be back jogging soon.

It seems as though you responded to the IVIG and not so good to Prednisone. Your dose is a bit high to only have a 50k count right now. As Tamar said, 50 is still good, but when a high dose like that does not give a good result, might be best to try to taper off of it. I'd see what your doctor says.

That happened to me. I received IVGs at time of diagnosis which I responded to. However, did not respond to prednisone, even at 60 mg I was in the 20's or 30's. luckily there are other treatments available to you.

Thanks so much everyone! It helps so much for the feedback to know what to expect! Will make the appointment easier as well with some awareness of what to expect (I.e. wean and other options etc)... Sure am glad I found this forum and appreciate so much the wealth of knowledge your all have in your responses and all the posts! Wow it helps!

Hope everyone having nice weekends!

Well an eventful day... Saw hematologist... As you said, she said I am not responding to prednisone for the dose and time to wean. So happy to do that but... Platelets at 39 so not too sure how happy to be as expecting the further drop with that.

Also found out bone marrow biopsy showed some abnormal platelet cells so was sent for cytogenetic testing. She said this will takes weeks to months to get back results from though. So not sure what that will mean. But... Meanwhile, because of this, and because I have already had radiation in the past she does not want to peruse rituximab and instead treatment plan is... Wean prednisone, wait for a further drop or bleeding and then ivig with the eventual plan that I will likely need a spleenectomy. Her "preference" is to be able to stabilize with ivig and get cytogenetics back before the surgeon referral though but has warned me if platelets drop too much or if ivig doesn't work may need emergent spleenectomy.

At first was not on board with spleenectomy until I thought about risks with unknown bone marrow and with potential risks with rituxian when already had radiation that may have led to bone marrow problems. So starting to come to terms with plans and fingers crossed can wait for cytogenetics to come back first!

Anyone have any feedback on what to know before spleenectomg or in the recovery phase?

I had a splenectomy in 2000, for hemolytic anemia, not ITP, but can tell you about the surgery. Back then they were not doing as many laparoscopic splenectomies so I had the full one, nice big scar on my belly, oh well. I did fine with the surgery and stayed in the hospital 4 days, the only time I had pain was when they had to move me to the bed from stretcher in the first day. I gradually felt better and pretty normal after 2 weeks. Probably at about 3 weeks after was able to feel completely normal. Before surgery they gave me vaccinations for pneumonia, meningitis and I have had to renew these every 5 years. I work in a school with young kids, don't get sick any more than anyone else, but I am careful to avoid people who seem really sick. I always wash my hands and use hand sanitizer frequently. I really don't worry about it except to keep up with vaccinations.

Hope your platelets stay up, you are doing great attitude wise! Sometimes that is the only thing you can control.

Thanks for the reply! That is great to hear as it was sounding like a rougher recovery period then that said 4-6 weeks online and was worrying me about infection risk so glad to know you don't find you get sicker more frequently! That was why I wasn't keen on the surgery idea at first was that worry, they say it isn't a high risk but "they" say a lot and it is different when it is about you versus random stats!!!

I have a perscription to get the immunizations as soon as the pharmacy can get them for those two as well to get it in advance preparing for it so that is good too! The hematogist does seem really good and on top of things! That's a relief!

Glad to hear the pain want that bad too... I am finger crossing for laprascopic but if tour open was mostly bad with moving the first day it makes me feel better! Thanks!

Yes, if you trust your hema and he/she seems on top of things, that makes a huge difference. I trusted mine and went into the splenectomy with a good attitude.

Here's the thing about illness after splenectomy. It's not that you get sick any more often with colds and such, but you are susceptible to certain bacteria and if you do become infected, they can become serious very quickly. Sepsis can set in and if not treated right away, can become deadly in a day or so. That's why they tell you to go to the ER for antibiotics at the sign of a fever.

Getting the vaccines regularly for life is paramount. Even after having the vaccines, you can still be at risk. They give a pneumonia vaccine, but you can still get other strains that can be serious. People have died from minor animal bites or getting dirt in a cut, because those bacteria cannot be fought well by the body without a spleen.

If you are vigilant and careful, you can avoid a serious situation. You just have to be aware of the risks.

Since you have a problem with your bone marrow, some of the other treatments are probably out for you (Rituxan, TPO's). It might be the time to consider the surgery if there are no other options. I would ask your doctor though what treatment would be available to you if the splenectomy does not work. I'd hope he has a backup plan.

Yes, my hema gives me antibiotics any time I have a fever.

She told me if I go to Martha's Vineyard in the summer to stay out of the woods! There is a tick borne illness babediosis (sp) that is endemic there and serious for people without spleens. I try to avoid ticks, wild animals too!

Thanks guys... You are awesome about answering questions and such useful info! Can't imagine if I hadn't found this board!!!

The hema said she would consider the rituxin after spleenctomy if worst case unless the bone marrow results show with into to the contrary. But would GI spleen first out if caution/precaution/weighing risks and benefits. The ivig also seemed to help the first time for a few weeks so potentially that but obviously not a long term option... So I think now hoping for the best for a bit of time to find out full results but prepared for a more urgent plan if need be...

Dropped the prednisone from 70 to 60 this am with baited breath I will admit but gotta do it sometime and want off it too!

Thanks again everyone for the info and hope your all having nice weekends!

I had my splenectomy done laprascopically, was only in the hospital one night. Didn't get my vaccines until after the surgery. Unfortunately, it didn't work for me. I don't get sick any more than before, but I do try to avoid anyone who is sick. Right now, that's not easy as my dad and brother both have colds and we spend a lot of time together at the hospital.

Hospitals are the worst place to be. Too many germs floating around!

Having an argument with one of the nurses' on mum's floor; she feels that mum should have gone home this weekend even tho dad and brother were sick. I guess they don't care if a patient brings germs in. But big sign on the door to the ward, " If you have flu like symptoms, please stay away". Go figure!