[Lily]

Hi Jenn,

Well we can only guess but I would assume it was a pulse dose of Pred she is talking about too. If it was anything else it would require more organising than just whipping you into hospital and doing it.

I guess she is seeing the rash as a sign of increased disease activity, for many it often is. She's taking your other symptoms into account also and this is good, she wouldnt have had any labs back after 4 hrs I shouldnt think. Besides...... we all know it's the whole picture that matters not just what a piece of paper from a lab tells them.

I hope things begin to improve for you soon :hugbetter: If you haven't been on Plaquenil long then it's an unstable time waiting for it to kick in, she's probably just being very concerned and pedantic about keeping the disease in check until this med has had time to work. That's a good thing :foryou:

love
Lily

 

[Lily]

Hi Jenn,

It's so hard to take everything in when we are really ill isnt it? I guess in those times it helped I had someone there with me when it was happening, something for you to consider if at all possible, a close friend or relative who can help take note of what the doc is saying.

Neuropathies are very common in Lupus and associated diseases, hence the further testing by the Neurologist. It will give them more information about what is going on. Whether this is mainly peripheral nerves (everything outside of your brain and spinal chord) or whether there is more going on with central nervous system (brain and spinal chord) so they know how aggressively to treat it. It will guide them in their decisions.

I'm unsure from your account whether she still means a pulse of Pred or whether she is referring to you starting Cyclophosphamide? Cyclo is given in hospital via an IV too. So if you are concerned you can ask her to clarify that for you. I guess she wont know the answer to the Cyclo question until they get further info on you from the Neuro though? Has an appt. been set up with one yet?

I found that pulse doses of Pred are the only way I can tolerate it without having a psychotic episode. Daily Pred is not an option for me especially in high doses.

But do remember its not very common for people to get pred induced psychosis, so no point worrying about something that may not happen :wink2: You have enough on your plate now :hugbetter: They may even keep you in for that possibly, at least you could explain your situation to them that you live alone and it's unknown to you how you will react so they may decide to monitor you more closely the first time. I have had pulses over a couple of days and stayed in but I guess everyone's situation is different.

I'm glad your B12/folates checked out ok, diagnosing a particular symptoms origin is often a process of ruling out other reasons for it. So it sounds like your doc is very thorough, which is great.

Take care and let us know how you are getting along ok?

love
Lily

 

[Lily]

Thanks Karen I have replied there with more relevant insight.

love
Lily