What treatment can I ask for?

[Lola_M]

Hi, I’d be grateful for some advice. I have mild ITP, with a platelet count of around 40. I’m very lucky in that I’ve never needed treatment - until now. I need surgery for an unrelated condition, and my haematologist has said that means prednisolone. My surgeon doesn’t think immuno-suppressants are a good idea in a pandemic (I can see his point). So I’m stuck in a loop, with no-one doing anything while my health worsens. Is there anything I can suggest to the haematologist that the NHS would be likely to fund and that doesn’t suppress the immune system, given its usual policy of steroids first? Help!

[Gabriella28]

Hi Lola. I’m afraid I don’t know but can your surgeon and haematologist not discuss it? I’m astonished that isn’t standard practice. You don’t say where you live, but we are being told here in the UK that Covid cases are quite low now, so maybe, depending on the severity of your condition requiring surgery, now is as good a time as any to take the steroids. Good luck.

[Dahle2424]

Has Anyone Discussed N-Plate injections or IVIG Transfusions.

[Daniel87]

3-4 days of IVIG can maybe boost your platelets to normal levels although i dont see a problem with taking 2-3 days steroids prior to surgery and taking extra care for yourself during that period. Although 40 is not so low either i had a surgery with 35 trc (appendix).

[Morgan]

I was told surgery was ok over 30. When i had less than that and had teeth extractions the first time i had IVIG and the second time N plate, both were successful. Prednisolone did the opposite of what it should and sent my platelets down to 0 so is not an option for me. I hope you find a soluton.

[Lola_M]

Thanks everyone for your replies. I am in the UK. You would think the surgeon and haematologist would talk to each other, wouldn't you! Instead, they write each other letters every couple of weeks and make no progress whatsoever. Neither is comfortable with steroids at the moment but I think the haematologist is struggling to get past the 'steroids are standard first-line treatment' response. This is for thyroid surgery, close to arteries, so they won't go ahead with a count of 40-ish. I will suggest N-Plate or IVIG, or a very short course of steroids.

[DAVIDJOEL]

That’s silliness. Take the Pred. It will boost your platelets. Period.

[Camdenjane]

Perhaps IVIG or WinRho

They are not immune suppressants

With Covid I would be care with steroids—- immune suppressants

[RobertSp]

In North America, prednisone is classed as an immuno-modulator. I have a similar count to yours and have had several short courses of prednisone in conjunction with Ivig. For me, the thing is to keep the total course of prednisone less that 10 days. Less days would be better.

Right now I would think the amount of COVID 19 in the hospital would be a significant concern. And yes the two doctors need to talk to each other better.

[stemie]

I have been in the same situation for 2 years. My haematologists tried thrombopoietin receceptor argonist - eg Romiplostim orEltrombopag.

[Anthonyh7]

As far as surgery is concerned the suggested safe platelet level is 50, albeit each case will need to be taken separately as people have different health issues and medical problems that need to be taken into consideration. Every patient is different so there is a lot to consider.

The following link gives a full list of all the various treatments that are currently available for ITP ..itpsupport.org.uk/index.php...

What you can do in the UK is get a referral to an ITP specialist to get a second opinion and full discussion / review of your case by an ITP expert. So depending on where you are in the UK, the following list will reveal which ITP specialist centre is nearest to you ...

ukitpforum.org/index.php/en...

You can get a referral by asking your GP to to so for you or you can ask the specialist currently treating you to refer you.

Best wishes and good luck

Anthony

[bruiser2017]

Hi Lola, based on my experience - similar levels and needing to get them up - my haematologist, who doesn't go with the steroid as first line of treatment mantra, put me on IVIg 60 grams per day for 2 days, level was 120 five days later and stayed up for 3 weeks before dropping down again. Another route could be a course of Tranexamic Acid.

I notice that there is a suggested safe platelet level is 50; my consultant says anything below 75 and he will not sanction operations.

Good luck, I hope you get safe resolution.

Ray

[scaryteacher in reply to bruiser2017]

It's 50 in Belgium, and has been for years. I had a big fatty lump removed from my shoulder/neck prior to 2013, under a GA, and my count was about 50.

[sam_b]

Hello Lola, I can really sympathise with you here as a long term sufferer of ITP and being an NHS in-patient awaiting surgery in the second week of March when the Covid-19 outbreak was taking hold. I was repeatedly asked about my ITP bedside, by visiting surgeons and doctors and I was telling them the same as you appear to be "...Ask the Haematologist who has been treating me for several years he is down the corridor."

Your Haematologist sounds a little like the consultant I've been under who flatly refused to accept or read the printouts I would take from the ITP forum regarding "Fatigue in ITP" and insisted I have a splenectomy when I first met him, which thankfully I resisted.

[Sachmo16]

Ivig I would suggest - this is the quickest way to raise your platelets - I had it every 6 weeks at the start of my ITP journey as nothing else worked for me - 2 days of transfusions snd platelets went up to around 200 each time and stayed above 50 for about 6 weeks each time. Only thing is it’s very expensive so many consultants are wary of giving it and even suggesting it, I was lucky and it helped enormously until I was lucky enough to go on a trial drug fostamamimib

[Sachmo16]

fostamatinib Which I’ve been on 4 years and the only drug that’s worked for me. Good luck

[Lola_M]

Thanks so much everyone - I’ve never posted asking for help before and all this is so helpful. Sam_b - fatigue has always been my main problem, too, but my haematologist really isn’t interested. And Anthony, I have now spoken to my GP about a referral to a specialist centre - didn’t know I could take that route. I have asked my haematologist for a referral over the years but she always said no point. Love the mypurplepatch blog, by the way - I found it very informative and accessible soon after diagnosis. I’ll post when I know what the solution is - next stop is surgeon again in a couple of weeks.

[sam_b]

... forgot to say my platelet levels where hovering around the twenties in January I started taking 50mg Revolade (Eltrombopag) and by 2nd week of March were 350+.

They are far more expensive but TPO-RA's may increase your count pre-surgery.

[CDmom]

Hi Lola,

How are you doing? I hope great but if not please consider alternative treatments like parasite rid (even if yu are not able to find any in your stool culture )or homopathics. I was VERY sick with platelets crashing every 10 days for 7 months needing IVIG to keep me alive before a friend had me try a parasite erradication medication and another friend had me start homeopathics to rebalance my system. I have been ITP free for 3 almost years and no IVIG for 3 plus years. Please let me know how you are doing. Be Well! Cindy