Question for anyone who has had IVIg

Sorry your counts are back down. I've never heard anyone say IVIG could be used to avoid splenectomy. THAT would get old fast! Who told you that?

Avoidance was probably the wrong word - meant that IVIg could have been a viable medium-long term treatment for me if it kept my platelet count up for a reasonable amount of time. Moot point now though, I guess!

Still trying to get the subconscious emotional side of my brain to catch up with the rational side, i.e. to accept that my count will go up and down, I'll feel OK some days and awful on others, and it's not anything I can really influence (apart from eating well and keeping at fit as my fatigue lets me). Some part of me is still hoping that my count will spontaneously become "normal" even though I know it's not going to happen, so I get disappointed and upset when it drops, because my hopes are unrealistically high. That said, can feel some acceptance creeping in slowly, so eventually I know I'll get used to my new "normal"

Rachael,
Sometimes it does take a time for your platelets to settle in at a certain number. In the meantime, try to eat well and take care of yourself. We all can have our ups and downs at different times in our life.

Good luck to you.

Hi Rachael,

I haven't got ITP, my 13 year old son has, but what you are saying about letting the emotional side of your brain catch up with the rational side really rings bells with me! I think I knew I had finally got there the first day I found myself thinking that 30 was a good number. Its not anywhere normal, but its safe and it allows my son to do pretty much anything he wants to do. Now, I honestly think both of us would settle for a lifetime of a consistent count of 50 for him - its "good enough". Everytime I go to the hospital with him, I end up thinking he is lucky - lucky that he doesn't have anything worse. Mind, he is lucky even for an ITP patient because he has negligible symptoms from it; although like you, he gets fatigued sometimes.

Don't beat yourself up about it, you WILL get your heart to the same place that your head is at now. And with any luck, something will push you into remission.

All the best, Ali

This is an interesting discussion. I don't think my emotional side has ever quite got in synch with my rational side. I know that I have chronic ITP, I've had it for 6 years and obviously a long time before that, but still every time my count goes up way high for seemingly no particular reason, I think that hey maybe this is it and I've gone into a remission. Every time my count has come back down again and my heart isn't broken, I simply say oh well, that wasn't it then.

I don't know whether I'm being realistic or just daft because people do go into remission after years so I kind of think there's a bit of realism there but possibly a little too much hope.. oh well.

I keep thinking of Barbara Pruitt (article in PDSA) and how she has lived with platelets at 10,000 for 50 years. She travels and does what she wants which I think is amazing. So, if my numbers were to stay low and I could keep the symptoms down I think I could live with that. She must have amazing doctors, though, because my doctor does seem to panic when my numbers get low.

The thing is, if you try everything and can't get the numbers up, you have no choice but to move on with life and the doctors can't do anything else for you so they let it go.

I don't know Barbara's story, but there used to be a few people here prior to N-Plate who could not get counts up after years of trying and just said "oh well". They did what they wanted to do.

As for remissions, I never thought it would happen to me either. It took 6 years of ups and downs before I hit it. I never thought it would last this long, but it has. If it ends, I won't be upset.

I know of a man here who has had ITP for almost 10 yrs with his count below 10,000. He has refused splenectomey and Nplate and leads what appears to be a normal life. I think he's close to 60 yrs. old now.

I like to hear stories like this--that people can live with low platelets--because sometimes the alternative can also cause a lot of problems (one med after another and splenectomey). When I was let out of the hospital, my platelets were only at 12,000 and I said I didn't know if I would take anything else. My doctor was a little upset--but he let it go. It's when you are in the hospital that they sometimes harrass you to do what they want.

Beside, sometimes Medicare and private insurance doesn't cover meds like Nplate (or it leaves you with a huge co-payment).

Hi all ... sadly IVIg not a solution for me after initial optimism when my count was up to 140 3 days after the treatment finished - was 26 a week later, and 13 a week after that. So going in to see consultant today to discuss options, and I think they're thinking of rituximab and the ever-present splenectomy. So, I have lots of questions for him, mostly based on what I've learned from this forum and the research articles we share, let's just hope he's prepared!

I would like to ask you all a question though, those who have had IVIg in particular - it's now been 3 weeks since the treatment, and apart from a week of headaches immediately afterwards, no side effects. Until the last few days, that is ... I've noticed that my skin is really sensitive now, and I've got patches of dermatitis on my hands and arms, and a slight rash that comes up on my arms and torso after a shower or bath, plus my face started peeling like something out of a horror movie with my regular moisturiser, so I've started using a different one, which seems to be OK so far. All more aesthetic issues than anything, but more worrying is that although I'm not really getting any bruises, I've got 3 haematomas and counting, including a huge one on the front of my left thigh that is about 2-3 inches across. It feels like my blood is doing something different now, just wondered if anyone else had noticed something similar? I've never had haematomas before, so am a little concerned!

Will ask the consultant about this too - let's see what his explanation is, and how it measures up to the people who actually know what ITP is like ...

Thanks in advance for your help and advice

Rachael,

IVIg is only a temporary rescue treatment, so it sounds like you got a pretty average response - its good to know that it works in that emergency though!

I have no explanation for the dermatitis or peeling, but your bruising sounds just like Dougie - after the first few months when he used to bruise a lot, he stopped getting them and now he probably bruises less than his brothers. But he does get haematomas when his count gets down to about 7. I think that your body probably adjusts in some way to having fewer platelets, until it reaches particularly low levels when you get a haematoma. The only other visible symptom that he has is that he gets a few petechiae on his lower legs when he gets below 15 or so, but you have to look hard for those!

Good luck with the hospital

My theory about the haematomas for Rachael is that after your count was high and you stopped killing off platelets for a while, you suddenly killed many of them off leaving mostly old small ineffective platelets so you bleed and bruise more. After a while they are all replaced with big new effective platelets and the bruising stops. It is because with ITP we usually have all new big platelets that we don't bleed as much as we ought to with such low counts. But when we drop suddenly we are left with a low count made up of old platelets which is not so good.

Thanks Ali and Ann - both your answers make a lot of sense ... I have a few petechiae and 3 haematomas, the only (small) bruises I have can be easily explained by me moving furniture about over the weekend! Vey short-staffed at the hospital today so didn't get to see doctor, will do so on Thursday - they did take some blood so I'l thinking my count will be down in single figures, given the haematomas. Am not fussed about any of it, I feel totally fine, and am avoiding the activities that might result in my hitting my head etc (which I guess is the main risk when you have a low count!) - mind you, I'm a clumsy sod Roll on the production of some new sticky platelets!

Hi Rachael,
Ann's response makes complete sense. This is exactly how I responded when my platelets crashed 1 1/2 years ago. I, too, have trouble with my skin--but not sure if it was from the IVIg or the Decadron; really, dry, patchy areas. Never had this trouble until my first episode with ITP in 2006. But, this second time, my skin has had more problems. I usually use a really good moisture on the face--mornng and night. This really helps a lot.

And, like you said; be really careful when your platelets are low and you will avoid a lot of bruising. Try not to bump yourself.
Good luck to you at the hospital.

Thanks DeeDee - am definitely going to try not to bump myself on anything, which for someone as accident-prone as me, probably means curling up on the sofa and surrounding myself with cushions! My count had dropped today, as I anticipated, currently at 9, so I'd imagine the docs will be pushing for some kind of treatment when I go back on Thursday. Easter holidays are coming up over here though so that'll probably delay things, particularly if we go down the rituximab route, as may need to be hospitalised for the first transfusion of that. Will just go with things for now and enjoy feeling as well as I currently do, despite the aesthetic issues

Rachael,
While your platelets are low and your doctors are deciding on which route to go, try to look up the list on this website on foods and meds that lower your platelets. This is what I did when mine were at 1-2000. After a while, the bruising and bleeding subsided quite a bit. I tried to follow the list of foods the best that I could (I avoided foods on the list). You can try this until you are showing less signs of bruising. This is just a thought. I did this and it worked for me.

Good luck to you.

When my 7yr old had her first IVIG treatment she had a constant headache for almost a week. The doctors warned us that could last up to 3 days but ended up being a constant problem for the first 4-5 days. Even for about another 3 days after that if she was up and moved around to much she would get the headache back. We didn't have to much of a problem with nausea after the first week.