Newly diagnosed, some queries

[bettybeth1]

Newly diagnosed.

So heres my story. I had bruising, bleeding, petechiae rash, so went for blood tests. Got a call to go into hosptial as platelet levels were at 1. Very scary time In Jan.

Had 2 round of IVIG and put onto 70mg daily of Pred.

All worked a treat. Platelets went to 96 in 4 days and released from hospital, started the tapering of the steroids (Awful tablets by the way)

Went from 70mg to 50mg, after 2 week. Platelets still climbing so Hemo sped up tapering. Now down weekly. Currently about to drop to 20mg this week.

Platelets at last blood count when I was taking 40mg was 315

Can I expect to see the drop come when I am completely off steroids, or at what level will the come if that makes sense?

Also, do you think this is quite a fast taper, as I am worried about the withdrawal effect kicking in.

14th Jan started on 70mg

Drop to 50mg 4th Feb

Drop to 40mg 18th Feb

Drop to 30mg 25th Feb

Drop to 20mg 4th Mar

Drop to 15mg 11th Mar

Drop to 10mg 18th Mar

Drop to 5mg 25th March

1st Apr off all steroids

Ritixumab has been talked about as next line of treatment.

[bettybeth1]

Also, has anyone found that they had an acute flare as opposed to chronic? And after initial steroid tapered off, they found no further problem, remission so to speak. From my research acute flares seem rare, but I'm still trying to be hopeful

[Daniel87]

From my experience you can expect everything and nothing. Sometimes good periods(remission) can last for years and sometimes itp kicks back when you still on lower dosage of steroids, so i would assume that in my case some unknown acute flare occurs somewhere in my body sometimes. So there is a hope :)Tapering steroids as you mentioned seems pretty standard to me, although i absulutely hate those damn steroids and wouldnt take them at all but thats just me..I have been struggling with itp since i was 14yo..so for 20 years, and my longest periods in remission was after splenectomy- about 5 years, from 2009-2014., and for last two years after i decided not to take any medications even when my platelet count was 0, it took year and a half without medications to heal by itself. I decided to risk it that way rather then suppressing flares with steroids.. now my numbers are around 300. Who knows what future brings.. I hope this is isolated drop of platelets in your case and that will never happen again. Good Luck!

[bettybeth1 in reply to Daniel87]

Thank you for the reply. I honestly never want to take these tablets again. As this was the first time this had ever happened and being in hospital, I sort of blindly allowed the doc to tell me a plan. More research since then has helped me though.

It's good to hear you managed to get your counts up with no medication too. I would much prefer that however also know everyone is different, but positive stories are great.

[Metalgod]

I came off steroids and platelets starting dropping so had a bone marrow biopsy to see if I was compatible with the drug eltromopag luckily I was and have been on it ever since but every person is different

[bettybeth1 in reply to Metalgod]

So you're platelets didn't start to drop til you stopped the steroids completely?

[Metalgod in reply to bettybeth1]

No they didn't they weened me of the steroids until on 5 mg but after a month platelets started dropping again so decided to try eltromopag as was a new drug then and only works with certain people hence bone marrow biopsy as drug creates platelets in the bone marrow

[bettybeth1 in reply to Metalgod]

Great. Thanks for the reply. Just a waiting game for me now to see whta happens as my steroids finish. 30 days to go and I will hopefully have my answers on where they stand and potential next line of treatment

[Metalgod in reply to bettybeth1]

Well I hope it all goes well but I think the steroids are just a stabilizer and are not recommended long term anyway because of side effects I put on over two stone in weight during my course of them but lucky my platelets have been pretty level for last 5 yrs

[bettybeth1 in reply to Metalgod]

I'm 1.5stone up in just 2 months. And the mood swings they have brought are unreal. Defo not nice tablets to take. So I'm very much looking forward to when they finish lol.

[Metalgod in reply to bettybeth1]

They put me on injections in the stomach first then after 6 weeks gave me the tablets dunno why but didn't get mood swings luckily

[Sachmo16]

I started on steroids and never ever again will I take them! I tried quite a few drugs to try and raise my platelets snd it’s a question of trying and then hopefully something will work, rituxamab did not work for me, I was then on a trial drug fostaminanib for 5 years which worked well but then trial ended and I had to start on something new - been on nplate now for 4 months and responded really well and only have to inject every 3 weeks snd platelets mid 100’s.

Depending how your platelets are ask your Dr about NPlate as a potential treatment - if it works it’s very easy - good luck.

[bettybeth1 in reply to Sachmo16]

Thanks for the reply. It's great to hear different stories. I honestly never want to be on steroids again either. I feel they have destroyed me. The mood swings, the weight gain. All things I know will go once I stop but still been a horrendous couple of months on them.

Rituximab has been talked about as next line of treatment should my platelets drop after the steroids drop so we will see how they go.

[Anthonyh7]

The following sources may be of some help to you Bettybeth1

In my 15 year ITP career, I have found that the following to be the most reliable & regularly updated places to get ITP information -

1. The ITP Support Association - UK Registered Charity established 1995 and the first support group for ITP patients anywhere in the World….

itpsupport.org.uk

2. The Platelet Support Disorder Association - USA established 1998

pdsa.org

3. The Global ITP Network

globalitp.org/index.php/pat…

4. The ITP Support Association HEALTHUNLOCKED forum - written by ITP sufferers for ITP sufferers. Currently with over 3400 people on the forum it is a lively, helpful and comforting place for all of us with this enigmatic condition. I am proud to have set it up back in 2011 and just ask that contributors bear in mind that we are looking for positivity, support and encouragement for all…..

healthunlocked.com/itpsupport

USEFUL REMINDER - One thing to be aware of about all of the various forums is that any content and/or suggestions, comments on any of them can never replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them. Always consult with and discuss your case in full with your doctor/specialist or medical professional before acting on anything.

If you wish to follow my ITP story please join me on the following links -

1. MyPurplePatch Twitter - @Patch1Purple

2. Anthony Heard Linkedin - linkedin.com/in/anthony-hea...

3. Something to Write Home About Blog - anthonypaulh.tumblr.com

Good luck with it & best wishes

Anthony

[bettybeth1 in reply to Anthonyh7]

That video is perfect. I've been down so many rabbit holes since my diagnoses. And was panicking about the tapering schedule but I can see now that it's due to such a short use.

Thank you for the links, they are super helpful.

[Bowiemolly]

Steroids are vile, reacted badly to them. I was on Revolade but suffered hair loss, now on N plate injection once a week. Platelets was down to 16 after 3 jabs 110, with little or no side effects. Romiplostim. Platelets checked then ring me with dosage of jab. 😁

[bettybeth1 in reply to Bowiemolly]

Great. Thanks for your story. I'm feeling a lot more optimistic after hearing other people's journeys with itp.

[Bowiemolly]

I was only diagnosed last August, am 61 and never been ill before, had horses for years, gave up after my last shire died. I was 58. Really healthy diet did Yoga and Zumba in and out of swimming pool. My consultant says Covid leaving people with ITP affecting there Immune system. As far as I know haven’t had it ! Had 2 antibody tests last April and September, both negative. I was told my immune system will do as it wants, I was trying to avoid all the immune boosting products around at the moment ! God knows !

🙏🙏🙏😁😁

[RobertSp]

I had a very similar beginning to this disease 30 years ago. Platelets crashed to less than 5. I had little bleeding and petechia. And yes prednisone is a nasty drug. But it does work. I found that tapering off of it slowly is important. If a person is on it for more than 10 days the tapering is very important to be done slowly. And it takes a long time to clear the system. It took many months after the last dose for the effects to really subside.

[bettybeth1]

I've been reading about the tapering and was concerned at thr speed that I was being tapered, however someone shared new guidance and it's to get new sufferers off the pred as soon as possible. I'm due to drop to 20ng this week. So we will see how things go. The sooner off them the better for me though.

[bettybeth1]

An update guys. On last blood test plates now at 423. So one extreme to the other. Doc has taken another week off tapering and just a waiting game of 5 weeks now to see how platelets hold when the steroids finally stop.