Steroids

[Naive]

Hi, I have bone marrow failure which has not yet been given a definite diagnosis.

I have pancytopenia and have had blood transfusions every month or so for the previous 4-5 months. I've also had Filgrastim injections for my neutrophils. My platelets are only slightly low and haven't required treatment.

I was recently in hospital for investigations for this bone marrow problem and weight loss.

While I was in hospital I was given intravenous and oral steroids and the Filgrastim needles were ceased.

I've been given a blood test request form to have a blood test but I wasn't told how long to wait before I have the test.

Is there a standard period of time for the steroids to wear off so that the neutrophil count is accurate and not still raised due to the drugs? I was not weaned off the steroids, they were just stopped abruptly because I was told I wasn't on them long enough to need to wean.

Will I be able to tell if the steroids have worn off by how soon my fluid retention goes away?

I'm still waiting on the results of tests taken while I was in hospital but I don't have an appointment yet to get the results. I was told there may be a 6-8 week wait. That's okay, but I don't want my neutrophils to drop and be at risk and not now about it.

Thanks for any answers.

[GoodDay5150]

Good day. I have taken steroids off and on for GVHD, and I don't think that you feel them wearing off because it is so gradual. With that, everyone responds a bit differently to these type of meds, and ppl have diff body mass, etc, so it's pretty hard to tell. We all wish you well in your treatment.

Mario

[Naive]

I had a seizure this morning, this was my first I've ever had. My bone marrow failure is still undiagnosed but I'm transfusion dependant. My white cells were very low but they have improved (neuts were at 0.1)and it's only my lymphocytes that are very low.

My body is deteriorating rapidly and I've lost so much weight that I'm on enteral feeds through a feeding tube. I've recently had two episodes of functional pseudo bowel obstruction....no cause found...theorised to be due to autonomic? nerves not working.

Now I've been referred to palliative care. My first appt is this afternoon. I realise that this is to help people with a terminal illness to be comfortable but no Doctor has told me outright that I'm dying. When I told my pharmacist about the pall care appt, he asked what time frame the Doctors gave me to live.

I'm a pretty pragmatic person and I'll accept whatever happens but I'm annoyed/frustrated and feel like I'm being patronised because I've never had any information given to me about my illness being terminal, despite repeated requests for information.

Has this happened to anyone else?

[lisa3112]

Oh my gosh I am so sorry you are being treated like this. As a nurse I find it disgusting that your medical team arnt keeping you fully informed. Even if you are a medical mystery at the moment they should involve you in decisions like palliative care. I hope you can get a patient representitive to discuss your concerns with doctors.

[Naive]

Thanks for the support. Surprisingly, I received more information from the Paal Care team than from anyone else. They were wonderful. They said my disease is life limiting but death was not imminent and just to get the legal things in place, like a Will, Advanced Health Directive etc.

I left feeling a lot more informed and in control and at ease.

Bye

Carol

[Naive]

I just have a question about my blood test results.

My copper level was low (amongst other deficiencies), that has now been corrected but my ceruloplasmin is still low. Doesn't that mean that my cells can't use the Copper because it has to have the Copper protein (ceruloplasmin) to attach to?

Would that explain my ongoing transfusion dependence despite my nutritional deficiencies being corrected?

I didn't realise my ceruloplasmin was still very low until I was given a copy of my test results and it was too late to ask the Doctor.

My physical condition is still deteriorating and I can no longer walk and have seizures, three in the last month. I had an MRI and it showed a lesion on my brain and in my spinal cord. I've been told this is progressive and is the part of my illness which will eventually kill me.

At least now, I have some answers.

Thanks for any information.

Carol

[Hopeful]

Naive,

I just wanted to let you know that you are in my thoughts and prayers. I wish I knew anything about copper deficiencies that could help you.

[Naive]

Thanks Hopeful, I appreciate your kind words.

I saw the haematologist today and got some more answers. Apparently my bowel isn't capable of absorbing a lot of essential nutrients and therefore my liver can't produce the metal transport proteins that I need (also explains my bouts of severe hypoglycaemia)...hence the constant low metal levels and the metals I DO have can't be utilised properly. He mentioned exchanging the feeding tube for a trial of TPN for three months. Problem is the Surgeon, Physician, Neurologist and Haematologist all have to come together on this change in treatment.

I had to have another 2 units of blood today (disappointing) and my WCC was a total of 2.0 (still too low but a lot better), platelets were normal.

It's a slow process getting answers, let alone treatments but I think we are finally heading in the right direction.

Carol