Newly Diagnosed and getting really frustrated.

Hi, can I just say this is a great site far better than a chat with the consultant.

I was admitted to hospital on the 8th Dec with PC of 4 found this out due to the rash. I had bleeding for a while before that but I didn't pay much attention as I have some auto immune disorder docs just have not been interested in diagnosing, they just treat the symptoms.

Anyhow, Docs put me on 50 mg pred, on the 10th my PC was 9 and the docs could not wait to get me out the door. I had a checkup on the 15th and my PC was back to 4. I recieved IVIG and this brought my PC up to 86 on the 23rd now the 30th PC is 40, still on 50 mg of pred and am finding the side effects unmanageable.

Basically, my consultant has not given me any advice on what is next on the agenda and Im pretty certain that by next week my platelets will have dropped further. I am 24 a single mother and in the final year of my degree.

Is it safe to say that the pred is not working? I am finding the side effects impossible to manage and know that if i stay on them I will not complete my degree, the other aspects of my life have just not registered into the equation as far as my doc is concerned. She also scared the life out of me about the whole spontaneous bleeding and then 1 day later was ushering me out the door. I am in the UK but am seriously considering going private.

I would like to hear more on treatment experiences before I next see my consultant as the information she has given me has been very limited.

Shen:

The treatments are mostly trial and error. What works for some may not work for others. I would say Prednisone is not doing for you what it ideally is supposed to do. Yes, the side effects can be horrendous, but I'd like to encourage you to try to keep your life normal as much as possible. I know it's not easy, but in the long run, you'll be glad you did. Been there! I know the doctors don't take your life into consideration, that was one of my complaints too. Their goal is to get your counts up and that is all they see. It can actually get worse as you taper, so be prepared for that.

There are other routes to go and it's okay to make suggestions. It can be intimidating at first, but if you read up on ITP and treatments, it can give you the knowledge to be confident.

You have another undiagnosed autoimmune disorder? There are a few that are common with ITP and sometimes treating one helps the other. What kind of doctor have you seen for that?

I am with rhematology, I will be seeing them on the 24th of Jan, was hoping that with having an active symptom and having just been referred to them in Sept that they would have taken the opportunity to do invasive tests.

As far as I know I have had some test for lupus but I am pretty sure that they only carried out one test and I know there is more than one. I am a positive person and have had random symptoms or ailments for as long as I remember. I just think that if they found the cause it may be more beneficial for treatment. The pred seems to be wiping me out, causing low moods and what i can only describe as cotton wool for brains.

I figured that trial and error was the way forward, might try homeopathy and a bit of yoga in the meantime. The doctor has not told me yet about what is available but there seems to be good reports on that rituximab. The only reason I recieved the IvIG was because I was traveling home for Christmas.

Thankyou for your reply

Sandi, I just read through some older posts, there is loads to get through on here. I am sorry to read that lupus has such an impact on your quality of life.

Yes, Lupus can have an impact on life, that's for sure. Gotta keep chugging along though!

I was afraid you were going to say you'd been tested for Lupus. ITP is one of the criteria. The problem with Lupus is that it can take a long time to develop enough to be diagnosed. Many people remain undiagnosed for years because they don't have enough symptoms or blood work to confirm a diagnosis. In that case, there isn't much the doctors can do other than monitor the patient. Hopefully, you never do get the diagnosis, although it does stink to hang in limbo. A good rheumatologist will recognize the possibility that Lupus is developing and help the patient manage symptoms. Too many of them just dismiss the patient; that really makes me angry.

Rituxan is a good option. It's a pretty popular ITP treatment.

My aunt has been diagnosed with lupus and she is struggling with getting a good treatment. My last unconfirmed diagnosis is Familial hibernian fever (traps) or something like that, just remembered I have not checked to see if ITP can be linked to it.

Plodding along is the only way forward, trying not to get angry at healthy people who are wasting their opportunities.

I don't think I have lupus though the more I read up on it, I was a lot worse when I was a teenager than what I am now. I very rarely need meds to manage my pain its just the constant fatigue and having to know my bodys limit so as not to over do it and the random bouts of unexplained things. Not looking forward to heama on weds I am getting off these steroids whether she likes it or not.

Thankyou Sandi, take care.

Welcome to our little place of comfort. ITP treatments can be hard to handle, especially pred. I've gone thru two ITP crashes and pred didn't do anything but mess with my mind and my body. This last time was less fun than the first, so much so that I will refuse it if there's a next time. The unknown nature of ITP I think is the worse. I worried where my counts would bottom and if a treatment would work.

The best part of this site is the people. There is a mountain of experience, patience and knowledge here. All the questions you wish you had asked or wish you understood what the MD said can probably be answered here. Because we've been through the valley we understand the anxiety and confusion. People live with ITP for years - no one is cured - but some experience a remission - mine was controlled for 10y and recently expressed itself again.

As Sandi said earlier, BTW she's a true fountain of knowledge, the best, and hardest, is to keep your life as normal as possible. It can be difficult and it's a cliche, but worry doesn't solve a thing.

Visit here often, ask questions always, vent here anytime - members around the world are here for each other.

Well,

I am heading back to England on Tuesday and I am leaving my son with my mother in Ireland. Have consultant on the 5th so I am hoping to know more then, still waiting on a miraculous recovery.

I shall be dropping in often. Thanks for all the advice.

Good luck. Let us know how it goes.