this is all new to me

hi all i was diagnosed 9 weeks ago with itp with a count of 9 and am now on steroid tapering. what a journey !!!!!!!! does anyone else find it hard to wrap there head around this disorder cuz i know i do.

Hi! Oh yes, take comfort in knowing that you are not alone in your confusion/frustration. It's been a little over a year for me and I still find myself all in a tizzy about it sometimes. It is getting better though. Is the prednisone working for you, is that why you are tapering?

yes it got my counts up but yet to have a count done in 2 weeks time after i taper to 5mg next week so am trying to remain optimistic but its the relapse uncertainty i hate. how succesful have u been urself? oh and thanks for ur reply.

I'm newly diagnosed. I got a petechia rash and bruising. Was admitted to hospital with platelet count of 3k in February. They did IVIg and prednisone in Hospital for 3 days they got it up to 87k when I left the hospital and started 40mg prednisone tablets, then to 20mg and then to 10mg. Platelets were at 167k eleven days after the IVIg, but started dropping (141k)while still on 10mg, and subsequently dropped to 89K when prednisone stopped. Hematologist immediately put me back on prednisone 60mg on March 7 now down to 40mg and then I go back for CBC on March 14th.
I don't like the prednisone because I don't feel like me. My limbs shake, muscles twitch, I can feel pressure all over my head. I have inappropriate verbal, or emotional (anger/tears) responses to things, anxiety, eating and weight gain too. I wonder if the prednisone is interfering with my ability to think & reason; possibly adding to confusion. I saw my Internist for help in understanding the situation, since she's a great communicator. She also helped with RX to help manage the anxiety. Presently I'm trying to understand treatment choices, and was wondering if there is a decision tree, treatment matrix or roadmap that exists, so I get a better handle on this. I'm very confused by this ITP ...Am I sick? ....Am I NOT sick? The Hematologist talks about more IVIg treatments, Splenectomy and Rituxcin. Splenectomy and Rituxcin both sound scary, but that maybe prednisone thinking/talking.
Any help from other members or ITP veterans would be most appreciated. Thank you.

Deb:

There is a lot to take in at first. Reading and learning is your best defense. Keep in mind that you do not have to make any quick decisions. ITP is usually not an emergency unless there is bleeding involved. If your counts are in a safe range (over 20k or 30k), you're okay for the time being.

I never considered myself sick when counts were low. I was just a person with lower than normal platelets. I was more tired and the treatments made me feel bad, but life went on. I had the same side effects as you while on Prednisone. My thoughts were all over the place. I found that the trick was to not take myself too seriously and try to laugh at my moods and words. I discovered that everyone else laughed with me and it made things easier. I have some of the funniest work stories.

Back to treatments. There are no set rules as to order, but there are some that are usually saved for last. Most of the time, Prednisone is first. It can cause remission for some people. IVIG is another option used in the beginning, but it is mostly a temporary, expensive and time consuming band-aid. Some people have had success with Win-Rho. It can be used if you are RH+. It takes about an hour and if a person is responsive, can last a few weeks or months. Next come the second set of options. Rituxan, Decadron, Imuran and CellCept. Rituxan is given once a week for four weeks. The infusions take about 4 to 6 hours. It can be a great way to achieve remission and for most, has few side effects. It does sound scary, but most find it less eventful than IVIG. Decadron is a steroid more potent than Prednisone, but is only taken four days a month for six months (according to protocol - can be used less). Imuran and CellCept are not used often, but can cause remission. They are immunusuppressants, but do not have the side effects that Prednisone does. Then come the last resorts. N-Plate and Promacta are newer drugs. They generally do not cause remission and are considered maintenance drugs, meaning that counts normally only stay up as long as you take them. Last is splenectomy. It used to be a common treatment, but is getting less popular as time goes on. People are realizing that it doesn't always work and there are risks. It is not something you ever HAVE to do....it's a choice. Some people end up going that route down the line, but isn't something you should rush into.

The important thing is to know your options and discuss them with your doctor. If he is knowledgeable about ITP, he will be familiar with the options and have an open mind.

BTW - NO ONE likes Prednisone. You're not alone there!

Sandi, You're Wonderful. The information you provided was very helpful. I also spotted the link to Blood Journal article(s) under the PDSA Treatments menu; so I will continue to read and prepare better for doctor visits. Thank you.

Blood Journal is great. I read it all the time.

sandi;yes deb it seems that sandi knows a lot about itp,she is a big help.ty andi for giving us more info about itp

hi debs u sound like it could be me talking lol. have been on 60mg of pred but am now on 10mg i feel like the me prior to all this starting has dissapeared as my head is still mashed and not with it since the pred but im hoping this improves as i come off them. i swear i grew horns and had a personality transplant !!!!! hang on in there we,ll crack this im sure xx

Deb, might you talk to your doctor about lower doses of prednisone? 60 mg sounds really high to me when your platelets were at 89K. Quite a few of us don't treat unless we are lower than 30. If you respond well to prednisone, you might be able to maintain safe counts with a much lower dose than 60 mg.

Whenever I read reports like yours, I am grateful for my non-alarmist hematologist, who, if my platelets had fallen to 20 or so, would probably up my pred. dosage to 15, maybe 20 mg. Our goal is the lowest possible prednisone to maintain safe count. You could ask your doctor why he/she doesn't think 89 is a very safe count.

hi all are awful headaches normal on pred tapering as other than that i feel pretty ok

As a follow-up to my previous post. On March 14th (after 3 days of 60mg & 4 days of 40mg Prednisone) I had 323,000 platelets. That represents an increase of 234,000 in 7 days. Hematologist instructed me to take 40 mg for another 5 days and then drop to 30 mg on Saturday (yesterday). I return tomorrow afternoon for another CBC. I'm not sure of the 'Why' for the big increase of prednisone, when I dropped to 89K. Perhaps one more try at a "Shock & Awe Campaign" to eliminate the bad antibodies from my system. The big increase does seem to indicate I can make platelets okay. Lots of questions for tomorrow for sure.

CBC says 320.000 as of 3/21. I've tapered to 30 mg prednisone now for 4 days. I've been instructed to keep at 30 till Saturday and then drop to 25 mg. This week I saw a different Hematologist in the practice and this doctor's take on my situation was different and they felt that I was probably tapered too quickly the first time, so the decision was to punch up the steroids to 60mg and they plan a slower taper off the prednisone and felt that there was 50% + chance I would achieve/retain remission from this 2nd round. So plan is to taper me at much slower pace this time.

I found myself heaving a HUGE sigh of relief as I left the Doctors office. I have new hope that this round of steroids will work; instead of simply waiting for prednisone to fail. It was nice to feel positive for a change.

I have also been fortunate enough to have so many folks praying for me and I'm also listening to a 'Healing Harmonies' music CD while I rest or sleep. In any event I'm pleased with (& grateful for) present platelet count and I hope it stays.

On 3/28 I had a count of 260K after a 30mg taper to 25mg of prednisone. I'm so grateful to this community for information I have received; so I now know that 60k drop is not a big deal & 260k is a very safe level. Perhaps I'm getting past the "Deer in the headlights" phase and now trying to figure out the "How Low Can You Go" strategy. I'm still on 25mg for the next 7 days, but looking forward to continuing the taper to lower milligrams and reduced side effects. After 7 weeks I'm trying to assimilate ITP into who I am, so I can get on down the road. Once again Thanks You for all the assistance.

Great attitude, Deb! It's a bump in the road, and certainly one that is manageable (although not always pleasant)!