Newbie help please. Knowledge is power!

THANK YOU everyone! : :ohmy:
What a picture emerges. It is so individual and I get why this med is so hated, mostly because it takes forever to get off it and recover from it. Ugh!
But I FEEL SO MUCH BETTER having read all the posts because I am not alone in the Pred fog, I have a sense of where I am and where I want to be and how I might be getting there!

Thank you for putting it in context!
Ferv x

I have some news...
After a week on 40 mgs Prednisolone I am with a count of 143...good news. That is the count I was on at 40mg the first time.

My lovely consultant, who took all the time I needed to process through my anxiety-ridden-brain-mush, wants to reduce the steroids but thinks the platelets will disappear again as the steroids drop and so he is introducing:
mycophenolate mofetil 500mg x2 daily
with that supporting a withdrawal of 5mg Prednisolone, total 35mg Pred for a week.

It seemed to make sense as he hopes to speed up the withdrawal of pred as the mm takes over.
Any thoughts on this?

Thanks in anticipation!

That's what I did. The steroids worked while I was on them and for 6 weeks after. Then a big crash down to a count of 2 and back on a lower dose of steroids while mycophenolate was introduced. It worked for me while I was on it although I had horrible side effects but they are pretty rare so don't worry about that. I was on it for just over a year, I couldn't tolerate it any longer, and as I came off it my counts fell again.

That's a hard call. I'm not a fan of that drug (took it for Lupus). I had side effects as well and had to stop taking it. Some people do just fine though. It may not work quickly for counts, at least not as fast as Prednisone might, so it could take time to see results.

Glad to hear that your count went up. That's great! It's also good news that they are slowly getting you of the preds. My side effect were horrible. Sleepless nights, sweating, tingling in my fingertips, pain on the bottom I my feet, blurry vision, and endless fatigue. I don't know if you had similar side effects but glad your getting off of them. I have never heard if the other medication that you are about to start taking but wishing you well.

Rene

Sandi

Well not quite as presented by my doc, I guess he's hoping for best case scenario and that it helps me get off the steroids whilst maintaining counts, but do they all flick through a meds manual while looking for a med that works? That didn't feel very comforting...maybe things are updated so fast it's the only way, which I can accept.
It's beginning to sound like a long shot.
He did start to talk about the newer drugs and dropped splenectomy into the conversation, which I stamped on firmly.I suggested he might like to not mention it again until he'd sorted the steroids out because I was feeling 'roid rage round the whole thing, which was quite liberating actually!
Thanks for the info, and I do remember that all this valuable information is hard won by what you've been through...respect!

Ann,

Thanks for sharing that part of your experience with me. I'm so sorry about the crash down to 2, I try not to think about counts much, especially as I have had a few better weeks on the steroids, but it's always there I guess and 2 is scary! Disappointing that counts fell when you came off mm too. So I guess you stuck it out to keep the counts up as long as you could... blo*dy tough!
How are you overall these days?
Sending all my kindest wishes

Hope you have more tolerance of MMF than I did. I shan't be taking it again. Made me so depressed and didn't hold my platelet count up. However it may well work perfectly for you fern.. Will e mail you during the week

Thanks Rene!

I think I took to the Pred quite well on the whole & the garden looked fab! Tapering is a whole other miserable story
How are your new meds settling in, you feel OK? What's your thinking re splenectomy now?
Take care
Ferv

Hi Mrs B!
Oh dear... nobody likes my new best friend MMF!
Will look out for your mail
Ferv

I'm just not a fan of those types of immunosuppressants. In my head, the risk is worse than the benefit. Doctors seem to think they do more than they actually seem to. I've tried both CellCept (MMF) and Imuran, hated them both. I've had about 7 Rheumatologists and every single one pushed those on me. Once was enough.

Sorry to be a downer. You might have much better luck.

Sandi,

You a downer...never. The meds, well that's another story

Now it looks like I am in a place with limited options, but there are choices.
I can:
1 just continue a slow withdrawal from Pred and hover around the mg/count that is maintainable, until it can be reduced in tiny increments.
2 continue as in 1 but aim to reduce steroids and ignore the count, ride it out.
3 continue this regime with MMF for a realistic time (1 month?) and see if it is likely to be possible to reduce Pred and then MMF
4 Or?
What are the risks with MMF as you see them?

Ferv:

I think options 1 and 2 will only result in low counts that may need treated anyway. Try MMF but give it 3 months if side effects are tolerable. It might work and 3 months is probably not long enough to do much long term damage. it's either that or go back to the drawing board with another plan.

Sandi:

Thanks for taking the time to look at the options as I saw them...
I know it may be useless, but I'm going go with a slow withdrawal and try to maintain levels by managing slow reductions. I think I need to try this for my peace mind around understanding this condition. I can always introduce MMF as and when.
My sense is that everyone here who warned me that the reduction was too fast and could lead to a crash was right! 65-40-30-40-35mg now and OK so far! Hope to drop 5 next week but wait and see what the platelets are doing. I'm seeing the consultant again on Monday to have liver function and kidney checks for the MMF, so I'll have a base line too. I hope he understands.
It seems to me this is no short trip and i can take the scenic route for what it's worth, a med at a time. Unless I'm derailed and then all bets are off of course.

HOWEVER still open to thoughts on the drawing board and other plans

Ferv:

Your outlook is great and that is so important. You seem calm and patient and that's what it takes. You also seem to have a great handle on what to expect and will know what to do if things get to a bad point. Hopefully your doctor will support and respect your decision.

Keep us posted.

Sandi:

Your post means a great deal to me. I read it as I was going to bed (I know bad sleep habits :-0) So glad I did and then I slept really well.

It is with this forum that I am learning 'my' best way forward. It was my goal from the beginning and now it's starting...best foot forward.

In case it's of interest I am posting the NHS guidance for this area of SE England. It might be of general interest for newbies do you think?

Thank you for your support you amazing woman!
www.surreyandsussex.nhs.uk/wp-content/uploads/2013/04/ITP-pathway-Nov-2013.pdf
Ferv

The NHS guidance is wrong on many, many points. I wish I had time to properly fisk it, but I counted two errors just in the first paragraph!

Rob, please clarify when you have time. I read the first two pages and didn't see anything that jumped out at me.

Sorry... apparently I also did not have time to consider what I was saying. Most of what I was referring to was extremely nitpicking - not worth mentioning.

There is what I think is an important error in the dosage for rituximab. The guidelines state that the general consensus locally is to use 100 mg/m² weekly for 4 weeks (as opposed to the standard dose of 375mg/m²). The low-dose dosage for Rituxan is 100 mg (fixed dose) weekly for 4 weeks, regardless of body size (m²), according to the International Consensus Report. This changes the dosage roughly by a factor of two.

I have searched and found the "100 mg/m²" designation in some other secondary sources, but not in any primary sources. All of the studies of which I am aware used the 100 mg fixed dose. Interestingly, the PDSA made the same mistake here:
www.pdsa.org/products-a-publications/e-news/2012-e-news/item/669-platelet-e-news-july-27th-2012#LoweringtheDoseofRituximab

Two things I liked. First, the recommendation of the indium screening test.

Second, the clear statement that, "Absolute contraindications to splenectomy include [...] patient’s refusal." This is critical, because later the guidelines state, "NICE’s advice on romiplostim and eltrombopag is that they are recommended for the treatment of adults with chronic idiopathic (immune) thrombocytopenia purpura who have had a splenectomy and whose condition is refractory to other treatments, or as a secondline treatment in adults who have not had a splenectomy because surgery is contraindicated, only if:
- Their condition is refractory to standard active treatments and rescue therapies
OR
- They have severe disease and a high risk of bleeding that needs frequent courses of rescue therapies
AND
- The manufacturer provides the drug with the discount agreed in the patient access scheme"
Some big "ifs" but certainly a step in the right direction.

The dosing guidelines for Nplate have changed since that was written too. Better for patients to use the manufacturer's guidelines.

www.medicines.org.uk/emc/medicine/23117/SPC/Nplate+with+Reconstitution+Pack/

Hi Team PDSA, you nitpick all you want! We paid for this ...me and the British Tax payer... so we want it right! Glad you honed in on the splenecectomy thing, Rob, I have re-read that a few times I can tell you. It make all the difference doesn't it?
And the dosage for Rituximab!!! I would have had no idea,
Your minds like a laser, great to have you on board

So Rob..

any thinking about my plan to go slow withdrawal from the Pred and allow for bruise up, as far as I can take it. Mainly to see how far I get and time to think of something or nothing... apart from immunopressants e.g. MMF.

Thanks for that Ann,
It's in my ITP bookmarks file.
I don't know what's next but good to know.

Ferv

I prefer to believe that the TPO's should be considered as a splenectomy sparing treatment, not solely for use after splenectomy has failed. They used to say that about Win-Rho and Rituxan.

I don't see the point that's being made about the splenectomy issue. NICE gives guidelines that says what treatments must be offered and if any particular Trust wants to go beyond those guidelines they do so. Most don't because of the expense. The Trust that wrote this document might but it's not guaranteed. Your doctor would still have to ask permission to treat outside NICE's guidelines.

Ferv,

I don't have personal experience with MMF or with long-term use of steroids, as others here do. I do believe in taking as little steroids as possible for as short a time as possible, and I am wary of immunosuppressants such as mycophenolate. I see no reason not to taper the prednisone until your counts reach 20, or blood blisters appear, but beyond that - as I recall from your original post - things became pretty unpleasant.

If you do decide to initiate treatment, I think Rituxan gives better results than mycophenolate. Are you still considering it?

I looked briefly to see if, other than steroids, there is any overlap between treatment drugs for ITP and ulcerative colitis. There seems to be some overlap with mycophenolate, but not with Rituxan. This could possibly be a clue as to which drug might be more effective for you against ITP.

Hi Rob

UC is becoming quiescent as I age...it sometimes happens with autoimmune stuff I understand...but not ITP by the sound of it, worst luck!
So I'm focused on the latter and yes, I am starting to think about Rituxan. I felt immunosuppressants were too full on this early in the game. I want to get to an ITP centre of excellence before I do that. I'm not sure what you mean by 'overlap', treating both conditions?
I like the way you look at it in such an individual way, because that's the tricky bit, no one size fits all here.
I'm down to 35 mg and signs of slight bruising are returning but also my brain and that's welcome. I know the drs are worried there might be a sudden fall, so I am monitoring carefully now.
Thanks for your input
Ferv

Ann:
That's clear, and it's good to know how things work...even when I want it to be different
I'm just chewing the cud over things further down the line because, right now I'm just exiting stage 1 I guess, knowing that I respond to steroids but relapse along with the majority of us. If i am right, that means I look at the 2nd stage meds and am rejecting immunosupressants at the mo, which leaves the other stuff on the list.
All being well I've got till Monday to read up.
Thanks for your help,
Ferv

I know, Ann. Sometimes there are no choices due to cost but that's how I would like it to be. It's too bad I can't have my way.

I rejected Rituxan in favour of the immunosuppressants. My reasoning was that if Rituxan didn't work I would still be immunosuppressed for a year. I didn't like that idea.