Been given the option of treatment

Went in for my FBC today and am at 32, the last two have been 36 and 34, so depending on how you look at it i'm either stable or creeping down. i have bruises, but only from where i've bumped into something, no spontaneous ones.

Had a chat with my haema (almost more of a girly natter as I swear she's about the same age as me) and she was quite excited to say that some new drugs had come out. Now it's not so much that they're new, everything she listed has been mentioned on here, but they've been approved for use in the UK by the powers that be.

She knows I didn't like the pred, largely down to the god-awful side effects. I've said no to a splenectomy at this early stage (i think 2 and a half years since Dx and only one course of treatment is a bit premature to be considering surgery, which seems to me as more of a last ditch attempt when everything else hasn't worked). So she's given me two other possibilities if i either choose to be treated, or if I drop below 20.

Danazol - am told this works best in young females - i'm 27 so she reckons it's worth a go.

Eltrombopag - may need careful monitoring at the start and tests on liver.

Does anyone have any experience with either of these (good and bad), did they work, how fast, side effects, practicality of fitting this around a full time job. I do have the blessed NHS so i won't have to pay for any of this - i just like to think i'm getting my money's worth out of my tax

Danazol is an odd one to be in the top two - it is not new, does not seem to have a high success rate with ITP and has lots of troubling side effects. Why not Rituxan, or WinRho on the short list? Or a dex pulse? or even IVIG? Most folks try those before Danazol these days. It's more for when nothing else is working.
Erica
You can search the board, lots of Danazol reports over the years.

I'm A Rhesus Negative, so WinRho is no good - and apparently has been withdrawn from use in the uk.

Steroids, IVIG and/or a transfusion she said would be used in an emergency. Is dexamethasone likely to be that different to prednisolone?

She listed lots of things, some new, some old - i know danazol has been around for a while, but I've been treatment free for 2 years, so it's only now we're considering it as a next possible step.

What sort of side effects does danazol have? I've been told about the abnormal hair growth (I'm hairy anyway, so that's something i deal with routinely).

Apparently dex pulse sometimes has a different better longer lasting result than pred for some people. And while the side effects can be more intense they are shorter lasting.

Looks like one short thread is spelled 'danizol' - www.pdsa.org/forum/7-treatment-general/9074-danizol.html#9088
Sandi posted this link:
www.drugs.com/sfx/danazol-side-effects.html

A few people here, not many, have reported long lasting (months and sometimes apparently a remission) effects from IVIG.

Erica

Wow, the side effects alone make me run from it... How long do you have to take it, is it long term? I am not familiar with this drug and am always looking at options other than the dreaded prednisone...

Maybe you should start a thread with subject line about 'danazol question' to attract the members who have experience. I've never had it. I think most people don't read every thread.

My next treatment would be imuran if needed, but I don't think a lot of people try that as an early treatment.
Erica

It depends where you are in the UK as to what is available. Eltrombopag is not available in England or Wales. Romiplostim is though. Has romiplostim been mentioned? Less harm to the liver and easier to take.

I wouldn't do Danazol for anything. I'd rather try mycophenolate or azathioprine but that's a personal preference.

Over 22 years ago when I had serum sickness thanks to amoxicillin and was put on prednisone I said I would NEVER take prednisone again - fast forward a couple years and I was hit with ITP and the choice of prednisone or splenectomy. So I have learned to never say NEVER - however I don't want to take danazol or dex!!!

Erica I don't remember anyone who went into remission thanks to IVIg - there are some here who have to have IVIg because nothing else works for them.

OK by the sounds of things i'm steering clear of danazol! i'll go and search the forum for info on it.

there were so many names, so romoplostim or promacta may have been amongst them. but apparently eltrombopag in some form has been approved very very recently.

Someone on the board, maybe two someones, said they had IVIG and their counts stayed up for a long time, it was over a year. It could just be a coincidence and not because of the IviG, it certainly isn't a drug that is thought to cause lasting remissions. It's more of a rescue drug. But I know I read some personal reports here where it lasted way longer than expected. Even my google-fu doesn't guide me how to turn that one up though.
Erica

OK I found one! In this thread: www.pdsa.org/forum/12-newly-diagnosed/14579-15-year-old-son-recently-diagnosed.html#14617 BethF mentions an IVIG treatment that kept her son's counts up for a full year. It's rare and I wouldn't expect it to happen but I knew I'd seen reports.
Erica

I really don't even know why Danazol is still listed as a treatment. It seems like most people go months with no improvement and just end up quitting it due to nasty side effects. I know of ONE person in the past 14 years who was able to stay on it and had good results. He was a man and didn't mind the manly side effects as much.

I took it for a week. Broke out in hives and got a boil-zit on my chin. That was the end of that.

I don't doubt that IVIG might work for me, but it's not really practical for me to be taking days off work (especially in the summer which is busy for us) to go and sit for several hours having an infusion.

Same thing with injections - depending on the time of day, I'd still have to take a few hours off work once a week to go and get my injection, and no doubt, more blood tests. My hospital is a 15 min drive from my flat (or 30 mins on public transport) and then my commute to work takes an hour.

Really what i need is a pill i can take once/twice a day and be done with it.

Romiplostim is self injected at home so hospital every four weeks.

Good luck with whatever you choose.

I have been on Eltrombopag ('Promacta' in the USA) for a year and a half now. For me it is the best treatment I've tried so far! Fewer side effects than other stuff I've tried. No injections, no monthly hospital trips.
While it doesn't work for everyone, Promacta keeps my count around 40k-50k. I take two pills a day (50mg total dose). For me, Promacta pills are far better than getting weekly injections that I would have to go to the doctor's office or hospital for. Although, I think that is changing now to allow home injections....still...I hate injections!
With Promacta, after the initial monitor & adjustment period, I only have to visit my Hematologist 3 times a year (unless I notice something wrong, which I have not as yet).
Best of all....In the past year and a half, I have only missed one day of work due to illness! Prior to Promacta, I caught every bug that came around when I used immune-suppressants as treatments.

It's expensive though....a little over $8,000.00 a month. My insurance covers all but $60.00 .

Of course, it's too new a drug to know what long-term effects may be. I'm too old to care much, but a young person such as yourself may want to consider that aspect.
.

Rigt done a bit more delving, and slight misunderstanding - romoplostim has been approved, eltrombopag hasn't:

www.itpsupport.org.uk/nice1.htm

so if i go for romoplostim, i think i'd rather trust the weekly injections to someone qualified (to start with anyway) than try to do it myself. the uk itp support foundation are still trying along with glaxosmithkline to get eltrombopag approved for use in the uk.

the more i read about danazol, the less i like the sound of it!

I thought that IVIg was very temporary,,, it has never lasted for more than a couple of weeks to a month for me... it just kind of gives me a boost and then the prednisone kind of takes it from there for me.

Erica you are Queen of google-fu
I don't usually read in the children's section.

Kasha my hematologist [and she was a good one whom I no longer have as we had to change medical] told me she has never had anyone go into remission on IVIg.

aurehsalla wrote: Rigt done a bit more delving, and slight misunderstanding - romoplostim has been approved, eltrombopag hasn't:

Except in Scotland where it has been given the go ahead but both drugs for more restricted use than in England and Wales.

so if i go for romoplostim, i think i'd rather trust the weekly injections to someone qualified (to start with anyway) than try to do it myself.

With both romiplostim and eltrombopag there is a period of time at the start where you have weekly blood tests as the dose is adjusted. When you're stable, they teach you how to do the injections and off you go.

the uk itp support foundation are still trying along with glaxosmithkline to get eltrombopag approved for use in the uk.

Yes, I spoke to the guy from the drug company last month and he said that they were reapplying to NICE with new evidence. Nothing as yet on the NICE website but I'm guessing it will come eventually.

Kasha my hematologist [and she was a good one whom I no longer have as we had to change medical] told me she has never had anyone go into remission on IVIg.[/quote]

Yeah, I didn't think so... BTW, I not longer have my favorite rheumatologist either because they no longer accepted my insurance,,, that totally sucked!

If there's one good thing in all of this though, my work have been very supportive. i sat down with my boss and supervisor this afternoon and explained the situation, more just to give them the heads up that i expect to go ahead with treatment at some point in the near future and that i'm researching my options, rather than spring it on them one day that i'm about to bugger off for regular or long trips to the hospital. Aside from being genuinely worried, they were asking what they can do to support me, if i need anything, and when the time comes they'll work out a plan so that my tasks are well covered etc etc. So a huge weight off my mind and they really appreciated my honesty.

One of the managers in my department is in remission from cancer, and he was off for a long time, came back part time and is now full time (with the odd appointment) - last year he got some test results over the phone, and it was such a shock that he collapsed in his office. After seeing the in-house doctor, they arranged him a car and a driver to take him all the way to his oncology unit 40 miles away. So that gives me a lot of reassurance that they'll look after me too!

I've never had IVIG because of the time involved, so I know what you're talking about. I went for Rituxan instead which are long infusions too, but there are only 4 of them and for most, they last. I was tired of Prednisone and Win-Rho didn't work. There were no TPO's then and splenectomy wasn't an option. Tried Danazol too...nothing left but Dex!