Visiting our lovely Professor.

[Jade]

Well I ended up with flu and nearly no voice in time for going down to London to see Prof Hughes. With train delays etc we spent about 7 hours in all travelling. Starting at 9 am and back at 11.45pm. Boy was I tired and completely useless the next day.

As we all know he is a lovely doc. Very thorough. We discussed my tests of 2004 at St Thomas. I was under the impression I tested negative and have never been retested since. BUT drum roll, I was misinformed by a junior, I am positive Anti ro. Yeah.

It feels so odd knowing I actual do have something wrong. Before I felt like a fraud and kept telling myself perhaps you are imagining all this. Now when things hurt I think, no it really is real. After all this time I am vindicated.

So we are going to try plaquenil again. I tried it in 2007 and I felt it depressed me and gave e nightmares he does not want that so thinks just 2 pills per week may be OK. I need to ring him in 3 months to say how it is going and going back in 6 months.

My next hurdle s getting the new GP to agree to it. My son has been trying since he saw the prof 6 weeks ago to get it but the GP is putting obstacles in his way and we share the same GP practice.

[MaryF Administrator]

Hopefully some clear clarification for you and an easier path through for your son. Mary F x

[Coppernob]

Why on earth is the GP being obstructive? Most of us don't have any bother getting Plaquenil on prescription, do we???

[MaryF Administrator]

Agreed! My 15 year old is on this, with success as she is very ill. I have a modern surgery who did refer us and also work closely with two hospitals and check medication carefully. They should refer him. Mary F x

[jessielou]

Hi hon

I had same difficulties with my gp over plaquenil, he insisted on shared care with hospital, so that it gets monitored, think is to do with effects on white blood cell count, not that it has affected mine, but that was what gp's reasoning was. I had a right palaver with sorting it out. Do persist for both of you. Although its not a miracle cure it does help. I know I don't feel good without it.

Take care gentle hugs love Sheena xxxxx