Doctors appointment results

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We talked about what happened with my arm. She feels it may not be acute steroid myopathy it could of been with-drawl from Dex. She said it may or may not happen again and honestly doesn't know if it would be worse or not. I also mentioned to her the bloating and trouble breathing as a result of bloating.

I brought up the fact that the side effects feel worse then ITP. That I have seriously been entertaining the thought of just not treating. Of course at that point she gave me the gory play by play of what would happen if I didn't treat.

We then discussed my options going back to Rhogam or having my spleen out or doing Dex again.

****** Doctor says splenecomy is out of the question she has seen too many fail.***********

She feels going back to Rhogam is still an option. Then suggested we could do the Dex with a wean. I said no. Then she suggested we could also try a low dose Dex. She says there are no studies but she has seen people do 20mgs of Dex instead of 40mgs and have it work.

I go back to see her in 3 months. she says I'd like you to do monthly blood work but I know you won't and that's ok because I know you will go when you need to. She will document the side effects and feels we should wait and revisit this at my next visit or earlier if my count drops and I need treatment. (which ever happens 1st)

I think the appointment went well, and i almost like her again!
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Have you ever thought about Promacta or N-Plate? :huh:

Is your arm getting better?

Winnifred what is your current platelet count?

Sandi- Last time I check I thought you could only get them here without a spleen. Truthfully I have never even considered using them because I respond so well, and these aren't meant to bring you to normal just to safe zone.

Response to treatment has never been my issue. It's the side effects. I'm a wimp I know it most people can handle them I just can't.

As for my arm I'm off light duties and pretty much back to normal.

mrsb04 - I think it was about 119 or 129 sorry can't remember.

Winifred. I have to question with a count that good why is any further treatment is being considered, surely watch and wait should be adopted

mrsb04 - Yes we will be watching and waiting that is why she made my next appointment for 3 months from now. No need to see her unless I see symptoms and my count drops.


What I have learned over the years is. Treatment works then sooner or later I drop. Problem is when I drop it's fast and straight to the bottom. Sometimes I see symptoms on the way down many times I don't. Doctor would like me to go for regular blood work but I'm non-compliant. I only go when I see symptoms which means sometimes i'm already at bottom.

Julia - I know you are responsive, but if treatments are being eliminated one by one due to side effects, your options are getting limited.

Winnifred 'm lucky as over here in the UK we don't have to pay for blood tests plus I can get a colleague at work to take
the sample.
I am sick and tired of taking drugs and suffering the side effects which are worse than having ITP.

Am determined to get down to the lowest possible dose of Prednisolone possible, preferably off it but GP thinks my adrenals may well be stuffed beyond redemption.
I have just started the 'leaky gut syndrome' diet to see if that is the way forward.
Anne x

mrsb04 = be careful if your doctor thinks your adrenal glands have been affected. My sister was recently very very ill to the point we may of lost her. Turns out her adrenal glands have suddenly have withered away and don't work at all.

I've decided to take the next 3 months to try that "leaky gut syndrome" diet too. I can say been about 1 week and I'm already starting to like how my stomach feels. I have IBS and can have issues daily related to that.

So sorry about your sister Winnifred- gosh that sounds really bad. Do they know what happened?

What exactly is the leaky gut diet that you are trying? I've heard different things- no wheat, no dairy? Or some say no grains at all. do you eat meat? I'll be interested in hearing all about it!

Right now I'm doing my best to get through the holidays without sugar (or very little)- goal is to not gain any holiday weight. hah we shall see- so far I'm doing pretty good- had some pumpkin pie but no candy or other holiday sweets.

mrsb-- good luck with your adrenals and treatment plans. I was very concerned about adrenal atrophy after being on low dose pred for 2-3 years. My doctor felt that my adrenals could come back if I got off pred- that was encouraging. So I did a very slow taper after getting down to 5mg. I reduced my dose by .5mg and alternated doses to weave in the new dose. I didn't reduce the dose until I felt okay, sometimes that took a couple weeks. I was able to finally get off of prednisone, and was very happy that my adrenals came back.

Since then I've had to be on prednisone again for 6+ months- ugh! and again did a slow taper. I felt quite fatigued for several months after stopping pred, and could not take stress. Couldn't exercise much either, my muscles would get very weak after going to the gym. Took 3 months to feel normal again. I've found that even a low dose of pred causes me problems/side effects, so trying my best to avoid it.

happy holidays and good health to all!

There's a theory that gluten can cause something know as leaky gut. That leads to other issues such as auto-immune disorders.

Your supposed to get your vitamin D3 levels checked and then testing for gluten sensitivity. My one sister saw natural path doctor cost big money I'm too cheap to spend money.


Basically right now i'm just removing the foods from my diet that bug my IBS or irritate my ulcer. Avoiding the main sources of gluten. After I switch to my new family doctor I'll try and ask him to do the testing current family doctor I can't ask.

The local health food store recommended a supplement that is supposed to fix the so called leaky gut. So far no side effects so i'm game to keep trying it and changing my food habits.

In my sister's case her disease is auto=immune. Twice as rare as ITP. Immune system attacked her adrenal glands (killing them) attacked her thyroid (now on 88mcg). She does not quote "need a name for the disease" all she needs is to know she is prednisone dependent. (her doctor says that ). She doesn't want to be a research patient to help others. The disease is supposedly so rare it has no name yet the doctor informed her it can not be passed down.

She and I are two different types of patients. She follows blindly and I ask questions!