Newly Diagnosed ITP Help

Looking for some general advice on my situation, I was diagnosed with ITP around 20 days ago and was admitted to hospital with a count in single figures.

I received Immuglobulin for two days when in hospital and have been on 70mg of prednisolone since. My platelet counts didn't respond to either treatment, All the counts have comeback between 3-5. All my other blood results look fine.

I was ill for a week with food poisoning before I was admitted to hospital. I started to notice the blood in the in urine and spots on my legs. But since then they have all disappeared and I feel great dispute my last count coming back as 5.

I am looking for a bit of advice:

1- Could the prednisolone be the reason that I no longer have blood spots or blood in the urine? Or does it need to increase platelet numbers in order to work? I find it very strange that all the symptoms have disappeared and feel completely normal but my count hasn't moved.

2- Can people not respond to IG and Steroids at all and still have ITP? I find it strange that if the main problem in ITP is platelet destruction by the immune system and both drugs are supposed to suppress the immune system that I have not seen any change at all in counts. (All have comeback between 1 and 5).

3- Should I be raising any other conditions apart from ITP with my Haematologist?
4- Should I be asking any other tests to rule other possibilities out?

Thanks in advance for your thoughts

Andy,

These are all very valid questions.

First question: What dosage of pred. are you on? Prednisone can raise counts, which could be the reason of no blood in your urine. But, since you say your counts haven't moved, it may just be your body trying to respond. Also know that I also felt completely normal with low counts when I was diagnosed. That is why ITP can completely blindside you!

Second question: There are many ITPers that do not respond to any type of treatment. ITP is so weird in that one type of treatment may work for you, but not for me and vice versa. It is also weird because one type of treatment may work one day and not work another day. ITP can become refractory to any treatment type at any time. ITP can also put itself in remission if it wants to. It may also go into remission for years...and then decide to come back for a visit! That is why it is so darn aggravating!

Third question: The blood is such an interesting part of the body. There are many components. If your blood work looked fine and your hematologist is not concerned, I would go with it. However, there are other types of disorders that he may want to test you for later on. Many people on here were given bone marrow biopsies in order to completely RULE OUT anything else. I was given one and it was a relief to know that what I have is only ITP and nothing else. However, you do NOT have to have one in order to get your diagnosis. It is not always necessary! There are also some who have not had one and also have the diagnosis of ITP. All doctors are different. In the end, it is your call. If I was you, however, (assuming I had a good relationship and trusted my doctor) I would trust what my doctor believes. They deal with this crap on a daily basis.

Fourth question: I kind of answered it above. It is completely your call. Research ITP and this forum to help you out! If you have any more questions, don't hesitate! We are here to offer support! :0)

Natalie

Hi there. I'm glad you found us.

It's hard to say why symptoms would disappear but counts stay low. Could be that your body adjusted to the lower counts, that sometimes happens.

Yes, people can have ITP and not respond to steroids. ITP used to be thought of as a destruction problem, but recent research has shown that production can be involved as well.

What other conditions do you have to raise with your Hemo? Not sure I understood that question.

Very few of us have had any extensive tests. They can usually tell by the CBC results that it's ITP because all of the other labs are normal. A Bone Marrow Biopsy is not necessary to diagnose ITP and there really aren't any others. It's very possible that your ITP was triggered by the food poisoning.

Hey Andy. Sorry your here, but glad too!
I don't think prednisone would have anything to do with some of your symptoms going away. As far as I know prednisone is just to raise your count. Other than the silly side effects of it! I only had bruising, and the red/purple dots on my foot once. No bleeding nose or gums, no mouth blisters. One thing you gotta get used to is that no one acts/reacts the same to this crazy disorder. Prednisone didn't do a thing for me either. My next treatment was NPlate, working great! I'm also on Rituxan, it's to early to tell is that's working yet. We'll see.
I'm with Sandi, if there aren't any other symptoms your concerned about there really isn't a need for any more tests.
Looking forward to seeing you around here.

Hi Andy, I'm new to this board too but welcome! My husband has just been diagnosed, what you describe with your new diagnosis is similar to what Don has encountered. Count of 2 when hospitalized, given platelet transfusions and IVIG in the hospital, although he did respond to the IVIG. Hemo doc put him on high dose (120mg) prednisone, but counts continued to drop, was 50 when he started a five day treatment of IVIG. He receives the last one Saturday, and we're hopeful it will work to bring up his count again. But fom what I've read already about ITP, your not responding to different treatments isn't surprising. I think prednisone might not work for many people, but it appears there are several more ways to treat ITP. It appears that a good hemo doc comes to the diagnosis of ITP as a process of elimination, and there doesn't seem to be many other conditions that wouldn't be detected in blood tests. Don says he didn't feel bad with a count of 2, and that he doesn't feel any different now. He still has bruises from May 11th, and some petichea, I don't know if a higher platelet level means they'll heal faster or not. For now we're trusting our hemo doc, to know best how to treat. Sorry you've been diagnosed, but try not to worry too much as stress can be bad for your body too. One other thought, has the doc said anything about an enlarged spleen?

Hey Andy!
This website is fantastic.. it really helped me when I was first diagnosed (three months ago)

The first time my counts were 11 I had LOTS of bruising (no bleeding gums, nose, etc, though)
The second time I had..err.. maybe four bruises...
The THIRD time it was 11 (which is now...heh), I had NO bruising.. I was actually shocked my count was down there.
Platelets aren't the only thing that make your blood clot... so it seems the body adjusts to the lack of platelets, and gets all the other gears going... (That's my guess, at any rate)

Prednisone kind of worked for me (got me up to 80).. but only on HIGH doses.. so I got off of it right fast and I'm currently not doing any treatment.. hence the low count. As everyone says, and will say, we all respond differently.. so the fact that you don't respond doesn't mean it's not your immune system..and not ITP...

I've only seen a hematologist once.. so I myself don't really know what to ask.

Read and research!! Knowledge is power.

Here's one reason why bleeding happens first off and then calms down. Imagine normal blood with some new and some old platelets. Then the body kills most of them off quickly so your count drops quickly. Some of the old platelets were wiped and some of the new, so that what remained was also a mixture .. a few old and a few new. After a few days the body wiped out all those platelets and only had large new ones it was making to replace them. New platelets are more efficient than old ones so the bleeding stops.

So a count of 5 with all new platelets is better than a count of 5 with some old platelets. It's the reason that we ITPers don't bleed as much as other thrombocytopenics. Hope that makes sense.

Thanks for all your replies, they were all very helpful and reassuring. It makes me a bit more comfortable to hear that other people have had similar experiences. I am a lot more comfortable accepting the diagnoisis of ITP. You kind of expect things to be a bit more clear cut, but I guess with ITP everyone responds differently to different drugs and even then the Doctors are really sure why some treatments work and other don't.

Sandi: I don't have any other conditions. I was under the misconception that if you don't respond to pred or IG then it's unlikely you have ITP, so that the ITP might be a side effect of some other condition.

donswife: I had a CT scan yesterday, so i guess this will cover the enlarged spleen.

I've spent quiet sometime reading around the different treatments but unfortunately it looks like for people who live in the UK are treatment options are really limited. Infact it looks like their are only 3. Steriods, IVG, and then get your spleen out. Since i've had no response to either steroids and IVG the Dr is already mentioning the Spleen removal as a possibility. I'm just not going to do that at the moment as I feel it's early days and I feel fine, and have no symptoms.

NPLATE and Rituxan where mentioned but neither is available in the UK as far as I can see. I might be able to get it privately but I am currently investigating this.

Anyone else had any success getting access to US drugs in the UK?

I'm thinking at the moment that as I have no symptoms I will just wait and watch and see what the body does. But I'd also like to have access to alternative treatments other than having my spleen out if I need it.

Rituxan, called rituximab here, is available although your haematologist will need to get funding approval. Nplate, called romiplostim, is available if you can get on a trial, as are a couple of other new drugs. We're waiting for an update from NICE about Nplate www.nice.org.uk/guidance/index.jsp?action=byID&o=12027 although the health authorities don't have to wait for that and can give it if they want to. It's available in Scotland. Eltrombopag called Revolade here and Promacta in the States is also on NICE www.nice.org.uk/guidance/index.jsp?action=byID&o=12025

There's also the indium test which we can get in the UK to show if the platelets are being killed off in the spleen or the liver. If it's the liver then a splenectomy is off the cards.

Having read your post again I see you think there are only 3 treatments available. That isn't quite the case. Apart from rituximab, azathioprine is very often used, mycophenolate as an alternative, and a few others.

Thanks for the information Ann, I will take it along with me today when I go see my haematologist.

Hi Andy,
My wife is also new to ITP. I have been and am doing a lot of reading.
Communicating with people here. One of the resources I found very easy to undersstand yet very complete www.harrisonspractice.com/practice/ub/view/Harrisons%20Practice/141183/2/Idiopathic_Thrombocytopenic_Purpura__ITP_
Hope this helps you. Also after reading this we decided to check for all the viruses mentioned there. We will be doing test for Helibactor Pylori also.
Now we are communicating with Homeopathy clinic in Kolkatta. Will keep you all informed how we progress.
FYI, my wife had 13k on friday and 7k on monday, now she almost has no spots.
Good luck to you,

HI Andy Im pretty new to ITP (diagnosed in April) and I am also in the UK...glad to see someone else is

gothicgirl: good to see other Brits here, hope everything is working out for you.

kievselva: thanks for the link that is one I haven't seen before. It's very useful, thanks.

I met with the hemo and my count still hasn't moved after 3 weeks on 70mg of Prednisolone. Lowest was 1 highest was 5 (yesterday). I guess their is a % error in their so the change is small to noexistant.

The Hemo wants to have me back in for a Bone marrow test and another course of IG. He mentioned that if that didn't work we would need to look at rituximab vs Spleen removal. Neither option looks v.good tbh. I'm tending towards the get of Prednisolone, have weekly counts and no treatment option at the moment, provided I don't have any bleeding symptoms. If in a few months time my count is still low and the body hasn't fixed itself then I think I would be happier looking at the drug or surgical route. But for the time being the "Idiopathic" e.g unknown cause makes me very uncomfortable thinking about taking power drugs or having organs out at such a early stage. I've had colds that lasted longer than 3 weeks, so would like to see what the body does.

I found this link which lists "Medications which may cause thrombocytopenia".

www.globalrph.com/thrombo.htm

prednisone is listed. Is this link just wrong? It seems strange if true. Could Pred given to a healthy person reduce their platelet counts? or interfere with their normal production or function?

Hey Andy,
I decided to take the wait-it-out route. I was on Prednisone for a little over two months.. and I will never take it again, thank you very much.

I've been off of it for two weeks now... hanging out around 11k. So far so good! (Of course.. I'm not quite as low as you.. but if you want to give your body a chance without drugs, I'll support you fully! )

Have you read Wish By Spirit? She got her count up by healthy eating and lifestyle changes (none of the treatments worked for her...) It's a very encouraging story.

Hi Jazzen glad to hear that you had some success with the no treatment option.

Thanks for the book suggestion I will definitely be getting a copy.

Nearly all drugs list thrombocytopenia as a side effect, even common ITP treatments. Even though it's a listed side effect does not mean it will affect you - everyone responds differently.

Hey Andy, I know this has been said before but i'm happy you found the board. It was and still invaluable during the early phases of ITP which can often be confusing and a roller coaster ride of CBC's. I can empathize with you as I have no response to pred (80mgs) and high dose steroids last about 10 days in my system as does IVIG. Weigh your options well, make informed decisions, doctors sometimes try to lead you down a path that you may not feel is quite right for you. Follow your gut, it hardly ever leads you wrong

hi there.

i was very well in ur situation also. i wasn't responding to predisone or ivigs either and i kept dropping in the single digits also. i was back 4 times within 2 weeks for ivigs bc i was so low. then to come to find out i ended up being steriod resistant (unresposive to steriod) so what they did for me was have the lap splenectomy done.ever since i had that done my counts have been in the 400,000 range and have stayed in that range for 6 months now and my last apointment in june my hemo. said i was in remission. and i haven't even hit the 1 year mark yet.... not until august. so idk if u are the same way i was or exactly what ur case is but u could talk to ur hemo about the other options from the predisone. but i recommend u get a bone marrow done if the steriods are not helping and if ur hemo brings up the splenectomy look into and c if its the right option for u. just bc it helped for me may not be right for u but thats my advice to u so good luck with everything and i hope u get better with ur counts and everything starts to look up for u.

Danielle