Havent posted for a long time !

Hi everyone.
I was diagnosed back in April 2010 with Idiopathic ITP and joined this forum. However since then I have gone downhill psycologically, I am now seeing a counsellor and been prescribed tablets for anxiety , panic attacks etc. I just can't help panicking about this and I dont know why. I am constantly checking my body for bruises, petichae etc. However I was at the Haemotologists again yesterday, got a count of 112,000 and he lowered my prednisilone again...on diagnosis I was on 16 tablets a day, this has gradually been reduced and yesterday he told me to take 1 tablet tomorrow (Friday), 1 on Monday, and 1 the following Monday, then no more and see him again in 6 weeks !!!! Now I am panicking because the steroids are being stopped I think I really just need a big kick up the *&% !!!! But I just can't help worrying

I seems your ITP has responded well to the steriods, a count of 112 is worth celebrating. I couldn't wait to get of prednisone, it tasted bad and did nothing for my platelet counts. The prednisone even has some side affects that can bring on some of that anxiety & etc. Hopefully the lower dosage will help with that too. take care Rodger

It's only natural to worry, but just try not to let that rule how u live your life. I still check my body for petechia and bruises. Your counts are great at the moment and hopefully you will one of few who still respond really well to the lower doses of pred.

Gothic - where do you live? I'll come and kick ya!

I don't have advice as far as anxiety - I didn't have that problem. I knew that ITP wouldn't kill me, I could get my counts up...so what was there to fear? Low counts do not = death.

Goth-

Prednisone can really mess with your emotions:

On high doses of pred, I'd swing from feeling like weeping if the dinner I cooked was not perfect, to feeling like I had the energy to build an addition to the house. I'm 58. I'm male.

I've had ITP for over 30 years, and used to freak out occasionally, especially while on prednisone, but then someone on this site posted the following link which really helped me a lot:

www.itpsupport.org.uk/american/%209.%20Can%20I%20Die%20from%20ITP.pdf

I check my body everyday.. though I should give up. I am the clumsiest person I know, so it's inevitable that I will have a new bruise or two every day.

My psychiatrist urged my Hema to not prescribe prednisone because she thought it wouldn't be a good choice with someone with Bipolar/Depression.

These forums are a great place to go when you feel overwhelmed. I find peace here in the posts of others who encourage us to take a breath. I remember my first couple of months being diagnosed- I was an emotional wreck. On top of that they took my bipolar medication away until they could rule it out- so I was even a bigger mess! But so many people on these forums will tell you that very few people die from this. It's best to take a breath and remember that you shouldn't let this stop you from living. If you spend all your time worrying about your illness, then you can't really be living. And aren't your worries about the effects they will have on your life? If you got hit by a car tomorrow and died, you may have wasted the last month of living because of a disease which was manageable.

Anyway, I really feel for you. My husband thinks I have a psychosomatic rash right now from stressing out so much. Just calm down! Remember to come whenever your feeling down. There is lots of wisdom to be found here.

Oh, Girl,

You are not alone! Yup, that Prednisone can really mess with your head! But so can just the ITP! Warning: if Pred does this to you, avoid Dexamethasone!!! :blink: It's high-dose steroids, and when my daughter was on them and still having ITP issues, she was doing the same as you--panic attacks--but also plucking her leg hair with tweezers (trictillomania!), being fatigued much of the time and having little interest in socializing most of the time.

For these reasons and others related to steroids (stomach upset, weight gain, increased risk for osteoporosis, diabetes and vision problems) we got her off the Dex and on to something different! We/she went for Rituxan after a year of ITP's yo-yoing counts--and has maintained great counts ever since (8 years now!). It was amazing how quickly all those symptoms/side effects disappeared--but hard to tell how much was due to stopping steroids, and how much was due to the psychological relief she got with her remission. If the Rituxan hadn't worked, we were heading for the 'monitor/no treatment' route, cause the other treatments available then hadn't worked for her. We were also going to start yoga--OHMMMMM--to give her a coping technique.

Nice to see Goths don't really LIKE the dark side ALL the time! :laugh: I'm hoping you've confounded your platelets, and things will even out for you very soon!
Ann, Caitlin's (23) Mom

Im in the UK Sandi so too far for you to kick lol !

That's too bad! My leg isn't that long.

I hope you're doing okay. Have you read "Excellent Advice" in the Newly Diagnosed Section? It might help, along with the link that Tad Moody posted.

To all those trying to deal with this cronic medical problem. Take it form someone who has struggled with this for 20 years and have tried everything in the book, it will be a long journey. (Counts for me were always around 10,000) Now at age 47 I watch what every step I take with these new drugs on the market. Promacta is now on the FDA watch, concerns of liver issues. I can tell after a few months on that I have bile in my urine (so watch out for that drug) Now the N-Palte issue. Was on it for 1 year then went to Promacta for those few months (easier then weekly doctor visits to get the shot) and now back to N-Plate. The cost of this drug will make you sick. I did not realize that every week the drug itself is $2,600+ ($135,000+ per year)and each week there is that copay for the doctors office ($45x52=$2,340 out of pocket expense). The side effects may not be as severe as Vincristine and Cyclophosphamide but none the less they are a problem. Headaches, muscles are weak and your always tired. I am mentally fustrated. Now how to come off this? Your platelets will fall drastically (I tried to skip a week went from 200,000 to 2,000)and worse then before you started. Where do we go from here. I'll take anyone's advise. I need to come this drug NOW. Do not start it if you don't have to. I was fine on prednisone 10 to 20 mg a day but felt better on that then the 2 new drugs they have come out with. Any advise would be appreciated.

How long were you on prednisone, esp at the doses of 10-20 mg/day? There are lots of things to watch for with long-term pred, but if you tolerate that drug, you might consider going back on it and just getting checked to make sure the long-term effects aren't happening.

I also tolerate prednisone well, and from 4-10 mg keeps my platelets at a minimally safe level (usually in the 20Ks). I take my dose in the morning, so it doesn't interfere much with sleep. I don't have the Cushing's Syndrome, nor weight gain, and as long as I'm under 12 mg/day, I don't get too hyper. I've decided to wait and stay on pred rather than try N-plate or Promacta--until we know more about the long-term side-effects of those drugs.

(I did try Rituxin, which didn't help me, and I had a splenectomy, which failed--which means WinRho isn't an option.)

I have had a couple of MRIs to make sure I don't have Avascular Necrosis. Although I have had cataract surgery on one eye, the cataract wasn't caused by pred. So far I've been lucky. I know that could change, but I figure I'm doing the best i can with the info I have--and tend not to get too stressed out about it.

Courage!

That reply I just sent was for Tearoom, not Gothgirl!

Anther case of 'your mileage may vary' I suppose....

Only been on treatments for 7 years, but I most definitely have far far fewer issues living with Promacta treatments (8 months now) than steroids, immune-suppressants, etc. I'm only 57, but I'll do most anything (except donate my spleen to science) to never take another dose of Prednisone, Dexamethasone, etc again.

Wasn't the Promacta FDA watch/recall this year due to the ELEVATE trials? That was in patients who already had hepatic (liver) disease. The ELEVATE study was canceled. The wording in online articles can be misleading.
All of us on Promacta and Nplate get liver tests also just to be safe, right? I do.

I'm curious, you had to pay a 'doctor's visit' co-pay as well as the drug cost copay when you got Nplate injections? An interesting arrangement which I have not seen before.

Yep...new drugs specifically created for one orphan disease are not cheap! We are paying for the research.
75mgs of Promacta is just under $8,000 a month, but my co-pay is only $60.
By contrast, Prednisone is inexpensive because it is generic and used to treat pretty much everything from the common cold to a stubbed toe.

Just wondering how my post haas ended up as someone else's ! Came to look at any replies/advice and ended up confused :huh: just saying !