Sticky Blood-Hughes Syndrome Support
8,339 members8,516 posts


have had a virus for the last 8 days,went to Drs yesterday, saw one who I have never seen before as my practise now only does pre bookable about 3 weeks away, when I wish to have a double with my own specific gp or same day, take who ever is available.

Anyway,she said chest was clear,just viral, rest fluids etc.

Trouble is,, I know myself and I know that once I am coughing like this I wont get better, just worse

Every time I get a virus, I end up with some sort of chest complaint that goes on for months.

Last time, I ended up in A&E in the middle of the night with severe chest pain, but that turned out to be costochondritis.

Eventually after much begging I got a 7 day course of prednisolone

I would rather not wait for months as I am not sleeping at all as when I go to bed I cough for hours, finally get off and then get woken with chest pain, and I also become completely incontinent every time I get a bad chest and it usually takes a few weeks after I have recovered for my bladder to return to normal

The drs wont give me anything untill someone from the lupus unit emails them and I usually contact the nurse, but this can take weeks

As I have recently changed consultant I wondered if emailing his secretary and asking for someone to contact my gp, might be a good idea.

How would I go about finding out the secreary,s email?

I am under Prof Khamashta

7 Replies

Hi, just ring the clinic and ask for the secretary's email address the write to them, marking the email for the consultant, give a really concise account of the problem, outlining what happens asking if it would be possible to write to the GP about this course of action, include all of your practice details for contact etc. Worth a shot. MaryF

1 like

Gosh, thanks for the swift reply Mary,,will do that now


Hi Donna.

I fully agree with Mary's advice.

Best wishes.



thank you, I have the email adress now, just about to fire one off


TBH if you ring Guys at the Clinic and ask to speak with the duty nurse and say you are under Prof Khamashta etc etc and say what you want, I have found he will call you back himself or will get another person to. You can also ask to be put through to his secretary and explain to her. Have everything you want to say written down with all your GP details etc if you want them to send or fax something to your GP urgently.


thank you,was just about to send the email when I realised I had looked it up for the wrong hospital (london bridge, not guys) so when looking up guys was not able to get email, but rang and left message on secretarys answerphone,last night I got some sleep,had massaged feet (old remedy) and chest with vicks,but this morning I sound like darth vader!

Will try the nurse today


had my steroids delivered yesterday

last time the dr told me to work the tapering out myself and I did so

this time he has given me instructions but they dont work and I am so poorly at the mo that its making me have a thick moment lol

yesterday I just took 8 as instructed and thought no more about it, but this morning i read the instructions, did the maths and then DUH

so it says take 8 for 2 to 3 days, reduce by 2 each 2 or three days

I have 30

so, 8 yesterday,8 today,6 tomorrow,6 the next leaves 2 tabs,,,does not seem like good tapering

but my brain has turned to complete mush and I cant work out the best way even though I did it myself last time

any suggestions

by the way, I have taken 7 today so I have 15 left


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