Sticky Blood-Hughes Syndrome Support
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Update from Oz

Hi, All.

Sorry that it's been a while since my last post here but things have been getting really hectic here.

Since my last post, my daughter has been into hospital and has had several visits to Dr Godfrey at St Vincent's in Melbourne.

Unfortunately, she has suffered a reaction to the steroids given her and has had a psychotic episode which has resulted in her being hospitalised in the local psychiatric ward.

I am very hesitant about her therapy, as they psychiatrist has recommended electro shock treatment for her condition.

Dr Godfrey has maintained contact with them and has suggested that her condition has been caused by a chemical reaction.

We stopped the steroids on his advice, but as he says, it will take some time for them to leave her system and then we'll have to try and regain the balance of her previous medications.

On the bright side, it appears that the Plaquenil she has been taking is at last having a good effect in that her mobility has increased dramatically and her pain levels are much reduced.

She says her headaches are much better and she no longer has a constant back ache.

At the moment, she has been confined under the mental health act, which means that she is an involuntary patient and will not be released back to us until the psychiatric team are convinced that she can look after herself properly or at least with our aid.

This, I fear may take some time, as she is very reticent to talk with them about her feelings or anything else other than general information.

I really feel that we might be at this for a while.

I have observed the staff in their care of the patients and am very impressed so far.

I was worried because I have heard all sorts of things about this place but so far so good.

My wife and I have had 2 meetings with her care team and we are satisfied that my girl is in the right place to be helped.

We are visiting her daily and have even had a few short outings together in the past couple of weeks.

It is so hard to have to take her back there, but.

Thank you for the kind and gentle support you all have given us.

Love to all from Oz

wayne L

12 Replies

Hi there, it is great to hear your news.. it sounds tricky still, but a life time away from when we all first met you on here. My heart goes out to you. Since we all met you on here all those months ago, and put our collective heads together, my daughter 15, has had a diagnosis of systemic lupus, and also hughes.. and has had central nervous system problems, but luckily, although I did push for a long time, once she got really ill she was rapidly started on aspirin and plaquenill. I hope the drugs soon settle down and you maintain making the steady progress. Yours posts from start to present make for very educational reading for all of us on here. Please keep giving us your news. Best wishes. Mary F x


Hi Mary....this is not a reply to a query but my thoughts on medical care.....I live in the US and even w/ the best and most expensive private medical insurance (I only have it because I retired from a New York State job..chosen in order to qualify for this insurance forever if I worked 10 years and was 62) is difficult to find MD's who

have heard of AP and look for it BEFORE someone gets a stroke.

And although I understand from reading your postings that accessing NHI services can be frustrating you are VERY FORTUNATE to have access to medical care.

An adequate medical plan in the US...if you have to get it on your own....can cost upwards of $1000/month


We are indeed lucky with our NHS, and if we can access it and get referred to somebody with the knowledge and skill, this is great, however in some areas GP's and PCT's can act very zealously as gatekeepers and refuse to refer people, either being dismissive or just not wanting to fund it. Also some medical staff have never heard of the condition and have ai times not acknowledged it - in some cases, leaving people very vulnerable, no NHS care of the right kind and so many people can't afford to pay for the private alternative, and many do not have private insurance that they can access! Mary F x


Yes...Im not sure this is the correct thread on which to debate this subject but agree with Mary. I am a case in point where I had to HAVE a stroke before I could get to a DR who could dx me and then and only then I had to pay because I had been mis-dx for 40 years!! I dont think it matters where you live or what system you live under. If the knowledge isnt there you cant access it!!


Hello Wayne. Thank you so much for letting us know how you, your wife and above all your daughter are getting on. Im so sad that she has had this reaction and that you feel so helpless at the moment. As a parent it is the most frustrating thing to have to stand by and watch others care for our children when all we want to do is scoop them up and take them home so we can hold and protect them from the world. We never think that at some point our role will be ruled by others.

I wish you all a speedy improvement in the current situation and send you big hugs and our love.

Please keep us updated when you can. x


Ps Wayne, it is great to hear about the outings.. I hope this helps a little with your whole family situation. Mary F x


Hi Wayne

Good to hear from you hon, so sorry to hear about the awful reaction your daughters had, it seems she's in the right place and I'm glad they taking good care of her. Here's hoping she'll be back with you soon! Great that the plaquenil is helping hon!

Scary times for you and your wife, sending gentle hugs your way!

Hugs n love Sheena xxxxxx :-) :-) :-)


Wayne I'm so sorry that your daughter has had this reaction to her medication. Please keep onto her medical team reminding them that it is more complex than a "normal" psychosis.

Your story reminded me of a friend whose son travelled to South America and became very ill and flown back to Australia where he continued to deteriorate and started hallucinating. he too was sectioned and his mother kept telling them he was sick not mentally ill but they ignored her for quite a while until they finally worked out he had Lupus! It had attacked his brain and when they treated him for that he recovered! Drs assume way too much and tend too ignore patients and their families when they should listen.

Big hugs to you all!


Yes a good point - the lack of listening at times is infuriating, and unless there is some expertise with lupus and or hughes, the lack of listening can have serious consequences. I have had this in the past with my own children. Luckily our paediatrian, although new to it all, has rapidly taken everything on board, helped immensely and got up to speed with all the correct medical reading and phone contacts! Mary F x


I just wanted to thank you for being a concerned loving parent. Your daughter is one lucky little lady to have you.... I know she may not feel that way with all of her health concerns right now but she will....


Hi Wayne

Sorry to hear about your daughter's psychotic episodes. I have heard of another APS having an 'episode' while on high doses of prednisolone (80mg) and a few others who have suffered paranoia after high doses. From first hand experience, I can see how much they changed my father when he was given 100mg for four days during chemotherapy treatment. No wonder you're not allowed to drive whilst taking that heavy a dose - I think road rage would be rampant due to the violent mood swings!

All the cases I have come across have turned out OK so I hope the same applies to your daughter. Steroids are not particularly pleasant drugs - even at low level (5-10mg) they can cause mood swings - personally they always make me feel my insides are shaking so I do try to avoid them if possible. I'm glad Tim Godfrey is looking after the APS side of things.

Wishing you all the best.

Kate :)


Hi, All.

Thank you so much for the well wishes and support!

The GOOD news is that she has been released (under the care of a Mental health support group) and has been assigned a support worker.

These people work in conjunction with us and her medical care professionals.

Her condition improved very dramatically over the past few days and she is back home.

She still has small periods of "being away", but they are few and far between now, and her mobility is just great.

We have to see her GP soon and she has to have bloods done on monday but that's fine with us.

Once again, thanks all.

On the issue of health insurance etc, since she is on a disability pension her costs are generally covered except for non Medicare listed tests.

These are usually moderate however some can be expensive.

We (my wife and I) used to have private insurance up until some years ago when I was unemployed for a few years. When I returned to full time work, we inquired about re-joining it, but were horrified to find out that most of our medical (and linked !) conditions would be excluded as pre-existing conditions.

SOOO not worth it and no discount to the rates, either.

I'm now a happy public patient, even though the waiting lists are ridiculous.


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