Prednisolone and platelets dropping

Hi guys, I'm very new here and a little bit lost. I'm hoping someone can help me wrap my head around what's going on!

My story started a few months back now. I'm in my 20's and I had bruising and the leg rash I can't spell. My blood work showed I had 0-5 platelets. Spent some time in hospital, was put on 1mg per kilo of bodyweight of prednisolone (so 70mg), and had 2 batches of IVIG.

IVIG didn't instantly show results but after a week something worked because my platelets started climbing back up and I ended up all the way back at 400! After 3 weeks of 70mg of prednisolone they dropped me to 50mg. I've been on that for a few weeks and haven't tapered off further because my platelets have been slowly dropping back off though I'm still well in the normal range, I've gone from 250->190->160 in the space of a week.

I see a good doctor but I don't think to ask questions at the time I get my blood results, as I get a bit overwhelmed.

Can anyone guide me on what this means? Are my platelets likely to keep dropping? Is this normal?

Thanks for reading this guys and thank you so much!

Minty,
Sadly there is no definite formula for predicting platelet counts. Luckily you are still pretty early in your journey with ITP so there is still a chance that you have acute ITP. Prednisone is usually the first line treatment for ITP and it does help some get their counts to a normal range. Unfortunately it has many nasty side effects, so lots of people try to get off, or try to get to a small dose as soon as possible. IVIG's effects typically only last 4 weeks so your drops could be attributed to IVIG 'wearing off' or the prednisone tapering. However everyone reacts differently to these different treatments so it's hard to predict what something will do for an individual. The good news is you have found this board where we can all share our experiences and treatments and vent when needed. Welcome to the board!

Barrell summed it up pretty well. We can't tell you what will happen with your counts. I know you see a downward trend, but sometimes they start to go up even when it doesn't seem like they will. I have to say though that a good bit of the time, counts do drop as Prednisone is tapered. Some people do get lucky and you could still be one of them.

Maybe you could write your questions down the day before you go and when you see the doctor, just remember to pull out the list? A lot of people do that in the beginning.

One question you might ask the doctor is what he/she sees as a safe number of platelets for you. Does this doctor have much experience with ITP? I know my doctor likes me to stay above 20K, preferably above 25K, but I use the lowest possible amount of prednisone to maintain that.

I started 80mg/day Prednisone on October 19 in the hospital when my count was 1. I was also given IVIg. My prednisone taper started 4 days later when I was released. Two days later my count was 172. One month later I had tapered all the way down to 10mg/day. For the past 12 days I've been on 10mg every other day. Omeprazole (a stomach acid inhibitor) is my only other medicine. My counts fluctuate, but remain in the normal range. 150 is the lowest they have been, and that was back when I tapered from 30 to 20mg. Today was 211, up from 180 two days ago.

My primary hematologist said it usually takes counts a month or two to fall after prednisone is tapered to a low dose, so the next few weeks are are very important. The hematologist I saw today said if my counts are going to fall again it will be months or years from now. He said to taper off prednisone complety and come back in a month with no need to get tested until then. The research I have done said counts usually fall as prednisone is tapered, and I took that to mean immediately. Could 10mg every other day really be holding my count in the normal range? If not, what is keeping it there? I know these seem like questions to ask a hematologist, but they gave me different answers and I think many of the people on here have more experience with ITP than both of them combined.

Welcome. I was the same way when diagnosed. I did not think to ask questions at the time. Prednisone did the same for me. Counts raised with higher doses then dropped with tapering off. I do not feel Prednisone is the answer for long term treatment of ITP. Side affects of long term Prednisone use are not enjoyable. You may have to consider a different treatment. You are at the low end of the normal range and you may continue to drop with the tapering off Prednisone. ITP is quite a "Rollercoaster" ride many ups and downs. You are not alone. We are here for you!!

Dave:

Counts can fall at any time during the taper. Tomorrow, next week, next month, next year....no one knows. Everyone responds differently.

10 mg's every other day could be helping to keep your counts up, but you are probably very responsive to Prednisone. Some people do attain a remission from Prednisone. I once had a remission for three years after a round of it. Only time will tell.

I was diagnosed with I.T.P. May 2010 after a vaccine. I was on Predisone 4.5 months. Platelets went up the first few weeks. After that no response. I've had IVIG 16 times. Retuxin 4 times and platelets dropped with Retuxin. I was on Danazol which did not work.
Usually the IVIG last 4 to 6 weeks. Three weeks ago, had IVIG and now platelets are 6.
At this point, don't know what to do? Doesn't seem to be much left to try.
Have been trying a natural remedy, but it's not working.
Anyone have suggestion? I feel lost and scared.

Minty~ I think its a good sign that your platelets have gone up so high. Hope they're staying up for you! I've never gotten mine up, just a few times past 90K, but mostly in the 20K -40K (which is okay for me, I don't have bleeding symptoms). Plus you know you don't have active bleeding at very low numbers, thats what it sounded like from your story, just bruising and spots. So in my humble opinion, those are good signs! good luck!

Lady Elly~ You might want to tell your story as a new topic to get more direct responses. I've tried Promacta and it worked pretty well. Curious what vaccine did you have that triggered ITP? I noticed my platelets fell after the flu shot. best of luck, hang in there!

My experience of prednisolone was good until I'd been off it for 6 weeks and then crash.. down to 2 overnight. Other people fall as they taper. Everyone is different.

poseymint:
I had a physical Mar 17, 2010 and platelets were normal 209,000. On April 1, 2010, I took the shingles vaccine and within weeks I started having brusing. On May 24, 2010, Went to doctor & platelets were 6. Next morning to Cancer Ctr. put on predisone, IVIG and on & on it goes.
April 2011, went to Mayo Clinic and hemotologist verified I.T.P. was caused by shingles vaccine.

How can a doctor determine the cause of ITP? Probably it's a guess.
Erica

They know a virus can cause ITP. The shingles vaccine is a live virus.

What medications help bring your platelets up? Are they holding?

Very interesting story Lady Elly. I've read that vaccines and viruses can cause low platelets. What they say is that when the immune system is mounting its attack against the virus thats in the vaccine, it accidently makes antibodies that stick also to platelets.

Usually everything normalizes fairly quickly, but makes sense to me that you could be the rare case whose immune system kept going and platelet numbers stayed low. Hopefully it will clear in time.

Prednisone has worked. Promacta 50mg has kept me around 40K- 50K for about 6 mos.

In a genetically predisposed individual, all it takes is a trigger.

Ann wrote: My experience of prednisolone was good until I'd been off it for 6 weeks and then crash.. down to 2 overnight. Other people fall as they taper. Everyone is different.

Ann, have you tried prednisone again since then? Do you think it's possible prednisone put you into a fragile remission and then something else triggered a relapse? After 25 days of 10mg every other day my count was 257 today. Now I am tapering down to 5mg every other day. My hematologist said if I relapse we can try prednisone again and do an even slower taper. Has anyone here been able to maintain a good count on a safe dose of prednisone as a long term solution to avoid other treatments?

It's not generally recommended to do that for ITP because of long term side effects. There really isn't a safe dose. Some people have done it though.

I've been on Prednisone for 7 years with no problems so far (not for ITP). I know it's bound to catch up with me sooner or later. I'm hoping for later.

Dave,
I don't think I would like to take prednisone long term, as in years but I did take it for about 11 months. Started with a count of 2k and 75mg of prednisone for about a month and then tapered slowly for 10 months. I have now had pretty normal (but not what I would call stable counts) for about 13 months. Did the slow taper work or is my case an acute case, who knows I guess time will tell.

Dave wrote:

Ann wrote: My experience of prednisolone was good until I'd been off it for 6 weeks and then crash.. down to 2 overnight. Other people fall as they taper. Everyone is different.

Ann, have you tried prednisone again since then? Do you think it's possible prednisone put you into a fragile remission and then something else triggered a relapse? After 25 days of 10mg every other day my count was 257 today. Now I am tapering down to 5mg every other day. My hematologist said if I relapse we can try prednisone again and do an even slower taper. Has anyone here been able to maintain a good count on a safe dose of prednisone as a long term solution to avoid other treatments?

I've had prednisolone again and not had a remission from it. I don't believe I was in any sort of remission, just the immunosuppressant effect wore off. I wouldn't take pred again if I can avoid it and wouldn't consider taking it non-stop.

When I have had to take pred. my haemo tries to get me off it asap.

I was on the pred pretty much from the first diagnosis of my ITP, at different doses, that is. Today, Dec. 31, I have been off the pred for 1 year! Yea! I have made it very clear to my hema that if I ever need to go back on it, I will NOT do anything higher than 30mgs.