Help with newly diagnosed ITP husband

[Dominiquegriff]

Where do I start?

11 days ago my husband woke up feeling unwell with a rash over his body and having nosebleeds.

He was rushed to hospital and said his platelets were at 1. This was new to us. And they said it was probably ITP.

He was also feeling unwell with fevers.

They started him on steroids and IVIG for 3 days and it did nothing but push his platelets up to 4. Still staying in hospital.

They then did a bone marrow biopsy. Still waiting for results.

On Friday just gone they started him on rituximab and antibiotics for the fever. His platelets still at 1 yesterday- obviously I know it’s not going to work overnight.

He said he feels ok, no more bleeding either.

I’m just scared and worried every moment of the day and don’t know what to think. This is all so new to us and I am 30 weeks pregnant.

Before this he was a healthy guy with no medical problems at all. I am hoping an infection has caused this and soon as it’s gone his platelets will go up. His other bloods are all ok.

Anyone been in a similar position and everything has worked out well? Is there any other treatment I can ask he goes on as well?

[Robert1959]

Hi DominiqueSo far it sounds like they are treating him along the exact same routine as I was when I was first diagnosed (Prednisone, IVIG, Rituximab, bone marrow biopsy).

I will be honest and tell you that these were pretty much unsuccessful in my case (please remember though that we are all different) however there are still many treatments available that he can begiven if that is the case. (ie NPlate (also known as Romiplostim), Cyclosporine, Dexamethasone just to name a few that I was given).

I was a severe case as well reaching the milestone count of 0 but eventually overcame the illness after 11 months and have been totally normal without any treatments for 7 years now so please do not give up hope as yet.

They must through these treatments in a logical, trial-and-error manner which just takes time. Some of the later treatments are very expensive so they generally do the cheaper ones initially.

It is a mysterious illness and apart from the bruising and bleeding, you generally feel OK (well I did) and it is the treatments that make you feel unwell.

ITP is not a fatal illness and can be managed, it just takes time so do not make yourself sick with worry.

Take care Rob

[DAVIDJOEL]

Agreed with Robert. BOne marrow results are important obviously but after that checks out ok he will get better and learn to manage the ITP. I take 75 mgs of promacta every day and that keeps me between 70-100. I’m more fatigued but that’s the drill. Any chance he just got vaccinated?

[salmagal]

Hi so scary my help was Romiplostim which i injected for 3 years now 5years clear this was after trying all different treatments thing is one mans meat another mans poison but stick in there always here if you need to to talk

[RobertSp]

Hi,

I had a pretty similar experience with counts down to 3 or 4. For several years I was getting an IvIg treatment every few months, or at least once a year. But that was 30 years ago. Now I live a relatively normal life and drug free for about 10 years. All this can be managed. Take care.

[Lindylou86]

Hi my daughter has now lived with ITP for the past 8 years , in the beginning it was constant bleeding 0 platelets , severe bruising and also had a couple of fits, over the years she has managed to live with it and indeed fir a couple of years platelets were over 100 that was on eltrombopag, unfortunately it stopped working , she now on fostamatinib which worked in the first instance but again she down to between 10 and 15 platelets she has tried every treatment listed and the next option is yet another indium scan to see if it is still her liver breaking down the platelets. Thing is as a previous comment there are no two people who react the same way to medication , my daughter although low platelets is well in herself (apart from tiredness) no bruising no bleeding so maybe it’s time to treat the person and not be frightened if the number ! Take care I hope it works out well for your husband and Also as a previous comment there is no quick fix fir ITP they have to work through the medications to see what works .

[Melgallagher76]

hi, I am in the same situation with my husband. It started in September and we are still no further forward.

He was allowed out of his hospital when his platelets reached 20 .

He had a short course of steroids but they stopped working and then he was out on elthromobag but he was exhausted on them and so we asked for something else.

He’s now on the injection and at first he was better in himself but as the weeks have gone on he’s totally exhausted and really depressed.

We don’t want to ask to change it cos finally we’ve had 2 weeks in a row where the platlets have increased slightly so we are hoping it’s working.

It’s really affected us, he’s has to be off work because of exhaustion and we are worried they are going to finish him. We’ve used all our savings to live on and now we are struggling.

He’s really depressed and we are going on holiday in 4 weeks time and I don’t know where we stand on flying and his medication