Newbie help please. Knowledge is power!

Wise words and they resonate...it's true 'why not me?'..and yes, not the worst thing for sure.
You are an ambassador for taking the power and managing your own condition, that's a great record 11 years remission. I like that approach, a lot!
I don't know too much about lupus, must be tough, I'm sorry...if anyone could knock the sucker in to touch I know it would be you!
Thank you for your 'attitude' here and for the kindly 'kick up the bum' as we say in the UK

Dru,
Thank you for your post and encouraging words...my garden is looking so much better, it's true. I'll look into rituxan and see if it's available in England.
Sandi said to slow down the reduction and that has helped a lot, I'm down to 35mg and things feel more manageable.
Best wishes for ongoing remissions
Ferv

Ferv yes it is available in UK..If the fostamatinib doesn't do the trick I think I may well try it

Well here we go, much as warned!

Down to 30mg Pred and platelets dropped to 50.
Haemo said to go back up to 40mg and stay there for a week hoping it stabilises.
I made a mistake and took 55mg in error, oh my mushy head!!!!
Anyone else mis-dosing themselves? Guessing it's not too critical, just a bit of a buzz maybe?
So about staying at 40... from tomorrow obviously... good idea?
They want to monitor the fall again in 3 days (Thursday) and then after the weekend when I have appts with the consultant and the haemo.
I feel this is all spinning a bit into knee jerk and platelet levels panic...
I know this is early days and this steroid stuff seems to be a rite of passage into the ITP gang,
which I do recognise from so many posts on this site...thank you again everyone!!!!!

personally with a count of 50 I would not have let my pred dose be increased I would have waited a bit longer to see what happened to my count

Don't worry about your slight overdose this morning. Will not be a problem. This is kind of what I said would happen when the dose is tapered too fast...counts drop and then the dose gets raised again. Stay at 40 mg's and see what happens. 50k is still a good count so hang in there and let us know how the next count goes.

Thanks Mrs B,
I listen and learn. It's my first trip round this merry go round and it's hard to be confident in my thinking, esp when I don't have time to confer Now I have and thanks for your response!

Yup Sandi,
can't say I wasn't warned, can I?!
I have to develop more confidence, I am just not assertive enough yet. Although I did take your advice re dropping by 5mg not 10mg so that was a step in the right direction.
Yes a 50 count feels fine, I'm not too phased by counts. Before I had any idea that I had a platelet problem I was VERY bruised everywhere (and didn't know to look for anything else). I'm nowhere near that at the mo.

I'll do as you suggest and will let you know. Thanks

You wouldn't know. Your doctor should. Of course you should always listen to your doctor until you know enough to question it yourself.

Sandi,

Yeah but, No but...
I'm afraid... as so many will vouch for ...you guys are the ones in the know and also the ones I trust!

You speak from experience and although I respect the haematologist I have, I am going to try for the ITP centre of excellence referral. I don't feel a sense of urgency, as this stage is just a tick box it seems...entry level and has to be done. You summed it up. It's a long game isn't it?
Still asymptomatic
Ferv

Ferv:

I was lucky to have an amiable, easy-going, small town Hemo. He is affiliated with a very good and reputable cancer center though and is a top rated doctor in our area. He didn't know much about ITP. Neither did I. I agreed to five weekly Win-Rho treatments and counts never budged (they were below 15k the whole time). I had a co-pay of $250 per treatment and it was all a waste of money. If Win-Rho doesn't work on the first shot, it's not going to. I didn't know that. Prednisone came after that, twice, and after a year of it all, I went to see an ITP expert in Pittsburgh. I thought she would have some magic treatment that would fix it and make it go away. After waiting hours to see her and having 20 vials of blood drawn, her recommendation was to continue taking Prednisone as needed. What a huge let down. It took all day to hear that.

I stuck with my small town guy because it took much less time and I was getting the exact same treatment suggestions. But once I started reading here, I began to learn and took charge after that. I made suggestions and he listened, but it took him a while to take me credibly. At first he sort of shrugged me off and said "you can't believe everything you read on the Internet". In time, he really did listen and the things I said changed the way he did things for ITP patients in his office. Such as: He began to test his ITP patients for H Pylori because of articles that I gave him. He also argued that Rituxan could not be used until after splenectomy. I proved him wrong and was his first ITP patient who used Rituxan. In time, he started to laugh at the things I suggested and began saying "Well, you're the expert". He pretty much just did what I wanted to do as far as treatments and doses. That was the most important thing to me. I had to live my life, he didn't. I worked full time and had three young kids; I had to manage ITP in a way that would make my life tolerable. When I chose to just monitor counts in the 20's and 30's for months instead of treating, he was behind that. When counts dropped lower and I was symptomatic, he suggested 60 mg's of Prednisone. I said, "no thank you" and suggested 20 mg's. It bumped me up for a while and I'd just do 20 mg's for a few weeks, taper off, and repeat again a few months later. He suggested splenectomy a few times and I declined. He never pushed it. I did the Prednisone thing for a while until Rituxan came along. It worked out for me.

Anyway, point being, he may not have known as much, but he was willing to be a team player and was never arrogant or pushy. He wasn't above joking with me, but that relationship took some time to establish. You have to advocate for yourself when you become comfortable with your knowledge. I'd take being able to do that any day over a doctor with more knowledge who insisted on things I didn't want. But...you have to know what you're talking about first. It's great if you can get both, but that's not always possible.

Sorry, I get so long-winded with you for some reason....I didn't write this to suggest that you shouldn't go to the new doctor. I wrote it to tell you about advocating for yourself, no matter which doctor you choose. It takes time.

Sandi

That's not long winded... it's really helpful to me. I totally get where you are coming from and it helps to have that clear picture for sure! When I read the way you grew into being your own best health advocate, I know it is what I want and what I'm hoping to achieve, once I know enough. I don't feel confident yet but I do think my haemo will allow me to decide ultimately and I'm definitely learning here.

I am concerned that she is already considering the IV thing though, to get me over the weekend, that seems a bit dramatic as I don't have a bruise and my count was 50 ish. So it is just about the status of platelets on Thursday and what I think is best for me. Your idea of choosing the dose and letting counts drop, is more up my street, already the pred effect is familiar and I am getting a sense of how it is working in me.

I think the ITP specialists will work in tandem maybe, my haemo seems very open to the suggestion. I don't think I will be discharged by her. so there is that possibility of a working relationship which I would greatly value.

As it is I do work, but part-time, and my children are grown, I have the luxury of that! I feel for those younger ones as you describe back then, with so much else in your lives to juggle.

I'm soooo glad that Rituxan worked for you. Mrs B said she might try it next, fingers crossed for her too.

Here in the U.S. if you don't want to see a doctor any more, you just don't make another appointment with them. Are you guys stuck seeing them if they don't 'discharge' you?

Yeah, go by the count on Thursday and go from there.

Sandi, no, you just cancel any appointment and don't make another. And you get your GP to refer you to whoever you want. In theory the new doctor should then ask the old doctor for copies of your records but that doesn't always happen. Sometimes they simply start again which can mean doubling up on tests.

Okay. I was wondering how that would work - forced visits! It's the same here with the paperwork. I've taken my own copies for new doctors at times too if I didn't want to go through the red tape or cost of transferring medical records.

Ann & Sandi

I am not sure how the medics like to work. So it's helpful to have that conversation. When I see the consultant next week I will raise this issue..will they work together? Re records:Even in the same hospital I have repeated myself endlessly and also voiced my concerns re extensive bruising, a known negative side effect (1%), since taking Mesalamine/Mesalazine (AKA:pentasa, asacol, mezavent...long list) were brushed aside...until here I am!

I believe the drug side effects have directly caused ITP. At first it might have been reversed by stopping the meds, I think, but I stayed on the meds too long until FINALLY I requested a blood count myself and stopped taking tablets before the result came through. The bruises stopped growing! Yeah, I thought. I went away for 10 days on the day of the blood test, but on my return it all kicked off with haematology because the count taken before I went away was 27.

I'm glad I did that, because I know, without doubt, that the bruising improved on stopping the meds, even if the count remained low. There's something to that I think, maybe better platelet function despite low counts?

So that's how I landed here. I've tried to track negative side effects reports.. pharmaceutical leaflet lists potential platelets/bruising problems. Research is not easy because of the huge range of names used but my list is growing.

It's possible that the drug caused platelets to be less sticky. Some drugs can do that. It's hard to correlate things like that because symptoms can come and go at odd times with ITP. Other things can affect it too.

OK Sandi, I'll try not to think pharmaceutical conspiracy theory then , it probably is just nebulous because of the way things shift all the time with ITP :

Will let you know counts tomorrow, I am still asymptomatic, a few small bruises only, so will turn down IVIG (haemo's thinking on Monday) and know i can always pump up the steroids if something happens.

Sounds good! Good luck!

Today
Phew! Sticking at 40 mg... Count up a little now 62
Plan to stay at this until Monday when I see the consultant and push for a slower withdrawal Thinking about 5 mg a week?
Does that sound ok?
BTW my haemo clinic and ITP centre have good working relationship and I have continuing care from the clinic. So that's a relief!
Summary
I was on 65mg...7 days count +200
Then 7 days 40mg count + 100
3 days 30 mg then upped to 35mg 4 days
Drop to 50+count
4 days at 40mg count stabilising 60+
Continuing on 4mg another 3 days
Then hoping to continue slow withdrawal

Oops 40mg not 4 of course!!!

Good news! Stick with 40 and see how it goes.

I couldn't hack dropping 5mg at a time. My GP changed it to 2.5 mg and that made it more tolerable

mrs B04

Thanks for this!
So the thinking is to go slower, but I have no idea how slow. Going down to 30 after 10 days at 65 over the next 10 days was too fast.
What happened going down by 5 for you? Why was 2.5 better?
So I should be thinking even slower!
Very interesting indeed...I hadn't even considered that!

When I was taking steroids I went down by 10mg at a time until I got to 20mg then 5mg at a time.

Ferv..I ached from head to foot all the time & felt utterly exhausted to the extent that even after 12 hours in bed at night I was worn out by lunch time each day, having to go to bed in the afternoons . Once I went onto a 2.5mg reduction after about 4 days I started to feel better but it wasn't until I got down to 7.5 mg a day that I felt remotely near normal. Once down to 5mg I feel absolutely fine. If I ever get off the wretched things I'll be dropping at 1mg a time .

You are in the UK so you should be able to access the link. There is a section on withdrawal cks.nice.org.uk/corticosteroids-oral#!scenariorecommendation:1

I think a lot can depend on the dose you started on, how long you were on high doses, and how many times you've done Prednisone in the past. Every time I had to taper off, it got harder.

I did like ann. Then when i got to 5, i next dropped to 5 one day and 2.5 the next, then 2.5 one day and none the next. Held each drop for 7 days before changing doses. It worked well for me. No major negative side effects. I was on pred for 6 months starting at 60 mg. glad to be done (at least for now) with that horrible drug.

Hello there!
I'm a newbie now. Just diagnosed with ITP three months ago. What a roller coaster ride. I wish I could get off. I have been reading some of the posts and it feels comforting to know that there are others out there that can relate to my situation. If anyone can connect with me, I would really appreciate it. I would like to hear more experiences on how you cope and what treatments some of you guys have had. Thanks, Rene.

Rene:

It would be a good idea to start your own thread. Tell your story and we'll take it from there.