Newbie help please. Knowledge is power!

Mrsb

I understand...People keep saying I look so well, as if that reflects how my health is, I suppose it's what they hope. I'm nearly retired and only work a few hours a week and can rest more. When everyone's under pressure at work I can imagine how it feels when fatigue hits you....it's brain fatigue too. My thinking is very disrupted. I hope that OH are supportive and the course is of use...

Ferv

It may be worth looking at this you should be able to access it as you are in UK.

www.nhs.uk/choiceintheNHS/Treatments/Pages/Treatments.aspx

In my book a refusal to have a splenectomy that is not guaranteed to work is a contra indication to having it.

Anne x
PS I've sent you a message via this site. You'll understand why when you read it xx

Ferv, I am sorry I was unclear. What I meant by taking a watchful waiting approach is to see if you can gradually taper down to NO prednisone and still hold tolerable platelet levels, then only treat temporarily when platelets drop from time to time. I am not an advocate of long term continuous use of prednisone, even at very low doses.

Rob
Oh drat!
I am just going to have to get off my island of denial, let go of my last thread of hope that it will sort itself out (I know, duh!)...and take 2nd line meds. Thanks Rob for clarifying. I wasn't taking your words as gospel, but it has clarified that I am being unrealistic. Can we put that down to Pred-brain ?
I'm on 8mg and still trying to reduce to 0, but less attached now and my consultant might find me more malleable on Monday.

Mrs b
Yes that's me, thanks re email. I've looked at the choice page, the Nice page, the Surrey and Sussex ITP Pathway.
I'm not being pressured into splenectomy and I think my other medical history+age makes it a non-starter. It's the 2nd line meds choice I got stuck on. Hey ho, it'll be good to stop the steroids. x

Hope you get a good outcome. Steroids are torture.I wasn't responsive to pred but have found I am to dex .Having to take the steroid dexamethasone along with the rituximab has been hell. I have just had the worst weekend of my life withdrawing after 4 days at 40mg.Legs of jelly, total wipeout ,dizziness, loss of taste. Even today I'm not right. It did however stop my nose and mouth bleeds for as long as I was taking it. A bit of oozing has since crept back but my count is today a wonderful 4 instead of the 1 it was a week ago! Because my Haemoglobin was also low at 84 I also had the joy of the NHS's ferrous sulphate depth charges! I only managed to take 5 in the week because of the terrible gut pain and vast amount of gas produced but they did raise my Haemoglobin to 95 today. For now just taking a gentler iron supp and tranexemic acid and watching and waiting and hoping for rituximab to work, but will try to beg a low dose of eltrombopag for a second chance. No way am I going near Dex again(I hope).

Hi Margaret,
what a horrid time of it you are having, I'm so sorry to hear about this last weekends distressful symptoms of withdrawal. I do hope your haemoglobin and counts stabilise. ITP seems to have hit us at about the same age! I was diagnosed in May.I have been started on MMF...in line with NICE England.TPOs not an option.
Please let me know how your count goes this week. Wishing you well
Ferv

When do TPOs become an option ?

I really don't know mrsb!

mrsb04 wrote: When do TPOs become an option ?

Depends on where you live and what insurance will pay for. It could be the very first option for some (if the doctor recommends it or if they know to ask).

We don't have insurance here in UK we have NICE guidelines to follow. The interpretation of which are subjective

Hi Mrs b and Sandi

Whilst I was there, my consultant spoke to the haematology specialist doctor about the interpretation re 2nd line treatment, and they were planning a meeting with pharmacy was my understanding. Until they get an OK for them as 2nd line it's no TPOs unless I have a splenectomy as you know only to well. Sadly NICE doesn't recognise sensitivity to antibiotics causing UC flare ups as a contraindication to splenectomy.
So it's MMF for now anyway.

Hi Fervenz,
You could try asking for an indium scan to see where your platelets are destroyed. If it was shown that you destroyed as many in your liver as your spleen( like me) then a splenectomy would be pointless and contra indicated and you might then have a more persuasive argument for TPOs.
To read the thinking behind the Scottish position on TPOs google;
Scottish medicines Consortium eltrombopag ITP.
It is agreed as a second line treatment for those unsuitable for splenectomy and at risk of bleeding.

I hope the MMF works for you.

Margaret

Yes I will ask for a scan if this doesn't work, do you think the reverse might be true though? If it is spleen based destruction, more strength to the argument for the op?
The Scottish guidelines are the same I think, with more defined description of refractory... including to corticosteroids...thank you for taking the time and trouble to explore this with me. As Mrsb says, I think there is some subjective interpretation taking place around the country, but whether that will happen in my hospital I don't yet know.
How are your symptoms and counts? How long do you expect to wait for signs of rituximab working?

Ferv..my indium scan showed only splenic destruction of platelets but my refusal to have one has not stopped me getting TPOs. If you get the chance to have one ask them to position you so you can watch it. I found it absolutely fascinating.

Fervenz there was a lady in our ITP group which used to meet every couple of months, unfortunately we haven't met in years.

Anyway this lady went from the US to London for the scan, it showed destruction in the spleen - after many years of very low counts and a stroke she decided to have her spleen removed. She had good counts for a while and then back to low counts.

So far no effect from the rituximab and dex but has been only 11days since fourth rituximab so change is still possible . It has taken me a week to get over the dex withdrawal. Count today was only 2 and I have been bleeding in nose and gums for a week now so my consultant agreed to give me another shot at Eltrombopag while still hoping for rituximab to kick in. I pointed out that I met the criteria set by the Scottish guidelines and he agreed that even if I only got to about 7 at least I should stop bleeding . He will monitor me weekly and review options if no progress. I hope you have some success with MMF. It might be my next port of call.
I hope you have a relaxing and Merry Christmas.

Thanks Mrsb
I shall bare that in mind...I asked today, but understood that they don't think it provides helpful information and it is not done in this hospital for now.

Melinda

Yes this seems to be the general concern. I really don't intend to take that route, whatever happens! Thanks for your input on this, it's good to hear of real experiences, although I am sad for the lady you wrote about. It must be so maddening, disappointing and scary to have to start over when it seemed to be sorted.

Margaret,

Thank you for your good wishes! I'm sorry to hear that it is taking a while to sort your low counts out. Maybe the shot of eltrombopag will work, as it did before and give you some relief. I hope so.You don't mention your haemoglobin count, has that improved? With such low counts I imagine you are in hospital...how is that going?

Merry Christmas to you too

Thanks Ferv,
My Haemoglobin has stayed around 94. My digestive system is recovering from the dex and ferrous sulphate so I am taking Spatone, a gentle iron supplement and may try an occasional ferrous tablet later on ,but not regularly. Consultant still suspects haemolytic anaemia but my test results weren't typical of that. No, I am not in hospital but I live only 5 mins away. Platelet transfusions are useless anyway; the platelets have gone by the next morning. I take the max dose of tranexemic acid. My next count/ checkup is on 23/12 and then I hope to get to my daughter's in Edinburgh for Xmas. Hope the Eltrombopag has some effect.thanks for your good wishes.

Ferv, maybe you can ask them to send you elsewhere for one. I fail to see how they can think the information is not useful, ruling out any liver involvement in platelet destruction is essential before recommending a splenectomy.

Mrsb

I was so taken aback by the disregard of the test that I have no verbatim recall of all the reasons not to do the test, but the theme was... it is inconclusive and so would not be accepted as a contraindication anyway, therefore no point having it done. End of ...Oh! Slapped back in my box.
Regroup in the New Year, thanks for your interest...
Have a great Christmas x

Hey Margaret,
Haemoglobin recovering a bit, that's good! I have taken spatone and found it very easy on the system...and effective given time.
Good luck with your next count, let us know! I'm going to my daughter and family tomorrow, and am looking forward to it very much.
I hope the Eltrombopag kicks in soon and you have a great break in Edinburgh,

I think the Indium is not considered to be very useful because really, all it can do is tell you if the splenectomy would not be successful. It cannot tell you that it will be successful. If it shows liver destruction, splenectomy will not be successful. If it shows splenic destruction, that still does not guarantee success as many splenectomies have failed anyway even when showing splenic destruction. Also, with the discovery of ITP patients also having problems with production, the spleen is not even involved which is another reason why splenectomies can fail.

Having the Indium can help a patient make the decision of whether or not to have a splenectomy and it could be useful for the doctors to stop pressuring the patient, but it is not a guarantee either way.

Oh I totally agree Sandy. It may not be useful from a finical consideration but as one has the right to make an informed choice the possibility of liver involvement needs to assessed. I believe a splenectomy should not even be suggested if there is liver involvement.

Sandi,Mrsb

I think that the haematologist's point was made in relation to TPO eligibility...an indium test would not be a contraindication for a splenectomy in any circumstances...only the extremely fragile or the very elderly might fall into that category. So it would not take us any further, because only a failed splenectomy would qualify. It's a real Catch 22.

Yes, it could be helpful in that situation. If the Indium shows liver destruction, that's a better case to use TPO's without splenectomy.

Ferv..if you have an indium scan and it shows liver involvement then a splenectomy is contraindicated as it will probably not work.