new here, wife trying to support ITP husband

My husband was diagnosed with ITP about 2 1/2 years ago. His platelets were first "flagged" as too low when he went to a routine physical and his counts were 99K. They wanted him to do a recount. He didn't understand the seriousness and hates going to the doctor so at his next yearly they retested and it was at 45K.

We headed to a local hematologist, where they tested for the normal battery of things and also tested to see whether his antidepressant was the cause. A whole bunch of tests and a few months later, voila, the non-diagnosis of ITP.

Basically a watch and wait with regular blood tests. His numbers have hit 30K and under three times and he has been put on Prednisone twice (his lowest count thusfar has been 12K. This last time he's been on it since February. It gets his numbers up quickly but then they drop. As of November 30th they decided he's been on Predisone too long and began buffing his immune system with immunizations for a splenectomy. But the more I research the more I don't feel like this should be our next line of defense. We have 2 young children who are often sick and when my husband is sick he spikes high fevers. I don't like the idea of having to run to the emergency room within hours if he spikes a fever, makes me a bit nervous. A second doctor recommended Rituxan first. We are thinking about seeking even a third opinion.

I have avoided learning too much information because I can get panicky, but now I see my job needs to be his advocate as we are heading into more invasive treatments. He would prefer me to do the research. I have spent a lot of today checking out the forums and the vast amount of information on the site and feel empowered. Especially reading these forums and finding out about so many of you living fulfilling and strong lives. Thank you for this place on the web!

Our other concern with these treatments is that my husband's work has very poor benefits and we worry about time off.

Avon:

Hello, sorry your husband has to deal with this.

First, I'd like to say that it's good that you are seeking other opinions. Splenectomy does not have to be the next option after Prednisone and in fact, should be considered toward the end. There are a lot of options still available to you. Rituxan is a good next option as it can provide remission for those who are responsive. He'd probably need to take four days off of work that month, but I considered it a small price to pay for a shot at remissison and it was really the only time I missed work in a seven year period due to ITP. Most people have few side effects and are able to work the next day.

Try not to worry. ITP is rarely ever fatal and as long as a person is monitored and does respond to treatment, there isn't much to worry about. Most people think the treatments are worse than the disorder itself because of side effects (steroids being one of the worst).

There really was no harm in waiting a year to have his platelets tested again. 99k is still a very good number and no one would have done anything at that point anyway. As long as he didn't have any bleeding/lower counts, there was no harm done. Most people do not treat until they get to 20k or 30k, but it depends on symptoms.

Yes, a person can lead a normal life with ITP. Sometimes it's a bit difficult finagling it with treatments, but you learn to adjust.

You're doing the right thing...learn as much as you can. It's your best defense. Most of the time with ITP, you have to advocate for yourself. Believe it or not, there are some doctors who know very little about ITP and tend to suggest old school treatments.

Thank you, Sandi! I'm so glad I discovered these forums. Four days off work would definitely be a small price to pay. That's good to hear the side effects aren't as bad as they sound. I know they are always showing worst case scenarios on the drug sites.

I feel so hopeful after reading these forums. I'm feeling like the disease is very unpredictable but I'm encouraged about the stable, normal lives so many of you are living.

Avon, what doses of prednisone was your husband on? And what side-effects,if any, did he have?

Karen R,

They started on 60 mgs, kept him on it for about 5 weeks then slowly weaning him off it. Now he only does .25 every other day so he is almost done. But it took so long because when he dropped under 30K on the meds they didn't want to take him off it completely. So its been since February.

Now that his dose is pretty low the side effects are not much at all. He still has a moon face and has gained weight around the belly without changing diet. When on more than 10 mgs he has trouble sleeping, indigestion/heartburn, irritibility (in his words), feeling low moodwise, and occasional diarrhea.