Newbie help please. Knowledge is power!

Sandi

I see you are dealing with quite a bunch of stuff and still you find time for the work you do here...8770 posts! The list you sent is daunting, just as ITP appeared daunting, but I feel more ready now to take things as they come (today anyway).

Thank you for your grounding presence in this forum, it has made a real difference to me as has all the support and experiences shared by others.

Thanks, Ferv. I appreciate that. I wouldn't have it any other way. The Forum format was changed a few years ago and on the Forum before that, I had over 20,000 posts. I've been here a very long time.

Prednisone isn't easy, but if you get a response, it can be tolerable. Have you had a count since you started it? We've all been there with that horrid drug, so just ask if you have an unexpected side effect.

Sandi,

Hi, I've hunkered down for a bit and just got on with it. When I think about the histories here...I feel a bit of a wooss!
1 week in at 65mg Pred. Bruises etc clearing and little gum bleeding, no more clots in mouth or between teeth and only one blister inside cheek. I had a blood check 4 days ago, I didn't hear anything but no alarms raised. My GP has been amazing, admitting that she knows nothing about it, can't advise me but providing enough blood forms so that I can get checks if I feel I need them. The hospital is formulaic, no room for anything other than consensus protocols, which they do well, I guess.
I have tremors, the shakes and fat fingers sensations, aches, some loss of sleep, fat belly and general unwellness, but these are all to be expected, aren't they?
I make my own kefir which has been fantastic for UC and now I hope it will protect my system a bit. It also helps to dampen cravings I think, and I'm being very controlled about eating (how did that happen?!!!). Everything I love is on the no no list...coffee, dark chocolate, tomatoes, onions, RED WINE, the list goes on. But I am giving it a full-on go for now. Also I will be upping my vit D from 1000 as soon as I get a go-ahead from Dr. I have found that beneficial with UC and there is some research evidence I found that a combination of high D with Plaquenil® (hydroxychloroquine) has been effective for ITP.
As you say, IF I get a response.... so fingers crossed for now.

GP's are not the best to deal with ITP, so if you don't have a Hemo, you might want to look into getting one. The treatments that come after Prednisone (if need be) are above the abilities of a GP to prescribe and manage.

Yes, your side effects do seem typical so far. You seem to be doing well with it so far. I'm glad your symptoms are disappearing, that's a good sign.

Sandi

I seem to be responding well, I was at 76 after 3 days of pred. I shall be checked again tomorrow, day 10 by the haemo, but I feel she's very by the book (old one) and count driven only, so I'm worrying about my possible adjustments if the count is high...

Some questions I have are:
Can a count go too high and if so what are the symptoms?
What should I be aiming at?eg: 75 and try to slowly reduce dose keeping stable or 350+ to get it high and then drop?
Is it reasonable to start reducing from 65mg after 2 weeks on pred?
Is there anywhere to search for specific info re the older patient?
Thank your time

With prednisone the count should be within normal limits. So anything below about 450 is fine. You won't reach higher counts than that because all the drug is doing is making the platelets last their true life instead of being killed off early. You should aim at a normal count and then slowly withdraw the drug so that the count stays up, hopefully.

Yeah, usually you wait until the count plateau's for a week or so then begin the taper. Hopefully it's slow enough that it won't cause a crash. If that happens, most doctors suggest starting over with the Prednisone or raise the dose back up.

Ann

Thank you for a quick response! I'm jittery and already trying to plan tomorrows appt...I think it's my general steroid agitation, but getting answers helps. I understand what to expect, query or worry about now.
I realise the levels are quite likely to fall rather than stay up, but at least it's a positive response for now.
See what tomorrow brings

Thank you I'll look out for that plateau and accept a slow taper and not try to rush it just to get off these horrid things.Less in the fog, thanks!

Fervenz
You asked if you can feel any symptoms if your counts are too high and from my experience I would have to say no.
I spent 2 weeks above 1 million and didn't feel any different than when I was at 0 (apart from not having any nose bleeds, bruising, mouth blisters, etc).
I found that the side effects from the medications were worse than the condition itself.

Robert

Thanks for that info...I'm just starting out and there's so much to learn!

Hi Ferv

In answer to your question I am, 41. I was 38 when it started, almost three years to the day.

It was around US Independence Day, and my brother and his U.S. Girlfriend were over from the states and they were having a bit of a party, and I lay on the floor as I was exhausted and covered in bruises I had no energy and was waiting for tests, I think they thought I had leukaemia initially.

When I said 10 I meant platlet numbers, and I live in the Midlands. Have just transfered to a ITP centre of excellence and had my first appointment today and was really impressed as when I told him I refused splenectomy and certain drugs he said he understood and has done loads more investigations and tests and is going to look at the best course of action. It was great to feel as though I am on. The same page with my new doc, whilst my last hospital were good I kept refusing what they offered and felt a bit at odds with their suggestions, as they seemed not to be up to date with current thinking on this disease, from everything I have read on here.
I would defiantly recommend getting to a centre of excellence for ITP - if not already, just ask for the referral. I used to feel flat after my appointments but I felt hopeful today.
Good luck.

Hi John,

Thanks for filling me in. I see you had very low counts pre diagnosis and fatigue was a big issue. That must have been tough with the leukaemia worry. Your stance is much as my own thinking, I am in your camp and would refuse splenectomy and am prepared to risk low counts. I have just had my first encounter with steroids and am waiting to see what happens on withdrawal, how low we go! My haemo sounds as though low maintenance dose might be her aim, that's not something I share. I went on Pred because of emerging mucosal blister, so now we know it works fast on me. Thank you for your experience with ITP centres of excellence...my request for a referral is going in this week.
It's encouraging to hear that you feel hopeful again after 3 years....wishing you loads of luck and feel free to keep me in the loop re developments.
All good wishes

PS:
I found this story which was extreme because of the patients age/greater chance of bleed and low counts...
May be of interest!

ouhsc.edu/platelets/ITP/crystal.html

That was a great story! A bit long, but the conservative approach was amazing.

Ha ha, you're right...it was a bit 'platelet by platelet' account but all the same, as you say, a great encouraging story all the way to the conservative end!

FRUSTRATED having a blue day

In the beginning
platelets 15-19
3xdays 65mg pred:platelets 75
10xdays 65mg pred:platelets 200+
17xdays 40mg pred:platelets 140
7daysx30mg pred: ..... tbc
Just as you all predicted, going up going down, steroid dependent.
It feels pointless to put the body through this and my head's been a total mess, or am I missing something?
Why is it the standard initial treatment?
What might I be hoping for?
Thank you to all who have shared and responded here and throughout the site.
Now I am further along I am re-reading your responses and find them soooo helpful all over again.

Oops error... that should read 7xdays 40mg:platelets 140

Ferv:

Don't give up yet. I do think you are being tapered too fast though. The jump from 60 mg's to 40 mg's was too much, and then the dose down 10 mg's 7 days later was also too fast. You went down to more than half of the initial dose in 2 weeks. Not your fault.

I see this all the time and don't understand what the rush is because the person just ends up going back up in dose at one point, or starting over. Prednisone does work sometimes, but usually not that way. Going down 5 mg's every week or even every other week seems to work better. You have side effects longer, yes, but sometimes this way just ends up being a waste of time.

I don't know why Prednisone is always used first. It just is....always was. Probably because it's cheap.

Once in a while, counts will go up even after counts start dropping and it doesn't look good. See what happens next and go from there.

Sandi

I wish I had a way to give something back for all that is offered here, and especially by you Sandi. You just seem to step in with your wisdom and kindness when and where it's needed.Can we have a virtual celebration when you reach 30000 posts
I'm a bit slow getting a handle on it all.
In my head I believe illness has a profile... but ITP is a shape shifter
With Your experience....
I was starting the next drop today, so now I am reducing it by 5mg not 10!! 35mg for a week.
Does the following sound familiar to anyone?
Ferv loses the Plot:
Example of my roid-brain-malfunction after dropping 65 to 40mg: Long story short...I bought a sofa wrong size and colour, that I don't need for far too much money and handed over cash!..
Who am I?, whose got my brain? Please give it back. I wan't even shopping for a sofa. I don't feel anything is real, some days.

Prednisone is the standard initial first-line therapy for ITP as recommended by the International consensus report on the investigation and management of primary immune thrombocytopenia.

Provan D et al ..the quickest way to access it is at the link below then go to the full text link (top right)


www.ncbi.nlm.nih.gov/pubmed?term=19846889#

Thank you Mrs B

I am looking at it now! Also thank you for pointing out the button link, I followed it after a bit of trial and error (brain!) and all is well.

It's the Prednisolone Ferv..my brain was completely mushed by it until I got below 12.5mg a day then the fog gradually lifted.

Mrs B
It's scary to hear that this is ''normal" &youve had it too:-(
I'm taking Sandis advice and slowing withdrawal, this week 35 mg. I'm so relieved to know you understand. Because I look fine I wonder if people think I'm putting it on. Mostly they assume the steroids are going to sort it PDQ and don't listen to a word I say. As I'm probably babbling unintelligably I suppose that's not surprising!!! Just tired to distraction thank you for listening x

Ferv:

I have a very long list of things that I've done while on Prednisone too. One involved driving fast through a very large puddle in a parking lot and splashing an entire family. I looked in my rear view mirror just long enough to see their stunned expressions and arms waving around. Oops.

Another one did involve the purchase of furniture. I went to a furniture store on my lunch hour one day and impulsively bought an armoire for $1,800. I also paid cash. When I told my husband, I pretty much insisted that "I deserved it". Lucky for him he didn't argue. However, it has become a very useful and much needed piece of furniture so I have never regretted the purchase.

I have more stories, most of which involve work. I'll save those for another time. Anyway, you're not alone and you're not crazy.

As for Prednisone being first-line, I think about this often. It is protocol and that is widely accepted, but no one ever explains why. Over the past few years, I have really been questioning the wisdom of it. The side effects are horrendous, most cannot tolerate it, and many go through it for months with no sustained benefit. But if you look at the alternatives, you have IVIG which is expensive, time consuming and very temporary. You have splenectomy which should never be considered first for obvious reasons. You have Rituxan which possibly could be tried first, but why go through the expense, time, toxicity and possibility of failure when something less expensive, less time consuming and less toxic could be tried first? Then you have the TPO's. In a perfect world, I think this would be the best first line treatment. The success rate is good, side effects are few and toxicity seems to be on the low end. But there is the cost which can be astronomical for many people. Realistically, I can understand why this is not the first choice, but it sure would be nice if it could be!

Sandi

Ah! You made us laugh. My daughter read your stories with me.. and I think she gets it more now. Thank you for that. By the way we both covet your armoire too and are v curious about the work stories ))
Yes, you make a clear point about the meds, it's just not the one any of us want to hear I suppose, and that makes it hard to accept.However it's great news thatTPOs are proving successful, that's something for the future anyway, even if not for all of us now. There does seem to be new research and thinking unfolding so changes are afoot.
Still things to explore and not giving up.

OMgosh - first of all, giving up is never an option. I don't allow it; not on my watch. Second, there is no choice but to keep going. It's been done before many times.

Actually, I rationalized the Prednisone/first line therapy theory as I was writing it. I get it now too (and hope I'm right - just an educated guess that made sense).

Okay, a few work stories:

I had been on 60 mg's for a few weeks and was really wired by then. My job was stressful with paperwork deadlines and I was an emotional wreck from going too fast and feeling the pressure. My mouth would not keep up with my brain and during a telephone conversation, I kept calling some woman "Spacey" instead of "Stacey". I did it about six times, and my co-worker decided to hold up a sign that had her name right. Every time I had to say the name, I looked at that sign and it worked. I felt like a complete idiot! Luckily, my co-worker was a very good friend who had some sort of radar when it came to me. She still does, even though I don't work there any more. She literally reads my mind. Loss of communication skills!

I depended on her so much (she sat near me) that I wanted her there all the time. Didn't want to share. One day my boss asked her to go into his office so she could go over a file with him. I did not want to hear that and in my Prednisone anger and frustration, I stood up, slammed my hands on my desk and yelled to my boss, "She's busy"! I can still see the startled look on both of their faces. :huh: Luckily, they both sort of understood what I was going through so they gave me a 'get real' look, pooh-poohed me and went into his office. We all laughed the next day. Insubordination!

Another day I got a letter from a tax collector with tax amounts on it that I needed for a property closing. The tax amount written was way too high based on the assessed value and I got instantly angry and bashed the woman verbally to my co-worker. I didn't stop. I finally threw the paper over to her and made her look at it. She calmly picked it up, smiled and with a pencil, placed a small decimal point where it should have been. She gave it back to me and said, "Is that better?" I took it and could only say, "Uh, yeah". Loss of logic and intelligence!

One last story. At lunchtime one day, another co-worker was complaining about her cable bill. She went on and on for what felt like half an hour. I suddenly couldn't stand listening to her for one more second; she may as well have been hitting gongs on the sides of my head. I lost it and loudly told her to shut up about that stupid cable bill, I was sick of hearing about it and didn't want to hear one. more. word! I got a look :dry: from both girls and she stopped. These girls were/are my very good friends and we all laughed later. We'd been there at that office for each other for 17 years and have been through thick and thin together. I was forgiven. Loss of social skills!

Well, I hope all of this helped. I have more 'at home' stories, but I think you get it. Prednisone does not = rational behavior.

Sandi

Thank you for that uplifting mail!
Your stories are so touching, it's smiling through tears a bit...I really feel that space! Especially for you working under pressure, I find anxiety rockets (new experience) at the slightest thing. You sound as if you had/have great people round you...I love the "she's busy!", makes me smile every time I think of it.
All the same it's weird to feel myself operating in random behaviour mode having been so steady all my life
My daughter has now reassessed batty Mum, after hearing your tales, and put me in the 'fairly alright' camp she just told me... ha ha...She doesn't know the half of it and I'm keeping it that way!!!!
How's it with you these days? Have you found a manageable level that works for you, with the lupus and ITP?
Ferv x
Great strapline: Prednisone does not= rational behaviour

Ferv - you won't recognize yourself for a while and will lose touch with reality a bit. It's only temporary and you'll get through it. I learned on my second round of Prednisone (about 4 months after the first) that it's best to chill as much as possible and do not take yourself seriously. It's okay to laugh at yourself. If you don't, you only feel sadness, anger, resentment and self-pity. I was angry at first that ITP had intruded on and invaded my perfectly good life, but came to realize that no one is immune to bad things happening and it could be worse. Yes, it was a difficult time but looking back, it has not been the worst thing I've had to go through. That perspective came in time. I also realized that I was pretty lucky compared to others here who could not get counts up at all or who were dealing with multiple autoimmune disorders. I challenged myself to make it through while trying to leave my family, co-workers and myself unscathed.

I have been in remission from ITP since 2004. It took 8 years of ups and downs and many treatments, mostly Prednisone. At one point, I began to take control of the treatment options by suggesting doses and treatments to my doctor. He was very willing to listen to me and cooperated. It sure made life a bit easier. As for Lupus, that is a constant struggle that keeps getting worse. I can't say that my attitude is all that great since my life has become pretty restricted in many ways, but I'm working on it.

Ferv,
I have been on prednisone many times since 1999. I had terrible side effects and always felt crazy on high doses. I never slept and stayed up all night cleaning my house, baking muffins at 3am and I really drove my family to the brink. My house was spotless. I usually am not hard to get along with but I was not the same on prednisone. The side effects are worth it for me as it always raised my counts. My counts go down when the dose is decreased and then I have treated with Rituxan. I have gotten good remissions from Rituxan.

Dont worry... When your dose is decreased you will start feeling more like your normal self.


Dru