Rheumy Appointment re SLE diagnosis

carola

Good Morning my Friends!

Hope we are all breakdancing out of bed this morning?

Later this morning I have a Rheumy Appointment. This is the one I had to beg for as they sent me a LETTER saying not Rheumatoid Arthritis but actually SLE (a form of Lupus) and PolyArthritis.

Determined to switch to a different med as Methotrexate not working at all. Have read about Hydrosychloroquine or Rituximab - does anyone have any experiences with these?

Have a great day everyone.
Carol

angel1

No experience Carol, as I`m OA, but just want to wish you well. You are going with the right attitude. Just keep thinking "I`m keeping this guy/gal employed, so they WILL do what I ask of them".......albeit in a very polite way, of course. You go girl!!........Ange.

elnafinn

All the best with your appointment, Carol. Have heard the names of those drugs many times on here. It is good that you go armed with knowledge about these drugs, knowledge is power. Makes one feel more confident when sitting opposite them, aye?

Luv
Elna x

tillytop

Hi Carola

Hope I'm not too late to wish you really good luck this morning!

Re the drugs - I have had Hydroxy for rheumatoid - but took in combination with other drugs - and don't know how effective it would have been on its own. Rituximab is one of the biologic drugs (similar to an anti-tnf) - not had this one though, sorry.

Really, really good luck - and please do let us know how you get on.

Love Tilly x

speedalong

Hi Carol,

Can't help on the meds front as I have OA, hope appointment goes well today.

Speedy

ironic

Hi Carol,

How did you get on today? Bit of a scamble for you!!!

Hope you are not too tired after your appointment.

Take care,

Lv, Ix

barbara12

Hi Carol
Sorry I cant help with the meds, but I just want to wish you well with your appointment, you fight your corner, and get the right treatment for you.
Lots of love
Barbara xx

carola

Hello and many thanks for the messages of good wishes.
Just posting an update incase anyone else has similar to me and it can help you!
Was initially diagnosed with Rheumatoid Arthritis and now rediagnosed with SLE (a bummer form of Lupus) & PolyArthritis.
Had been taking Methotrexate (20mg weekly) anyway for RA. Told Rheumy yesterday that Meth not making a difference and wanted to try Hydroxycholoroquine.
So, to give my Meth another few weeks to try to take effect meantime to start Hydro and a steriod (cannae remember the anme of it!) and see how I get on. The Rheumy was brilliant and said she has a feeling that I will be on her back and laughed and said I seem so determined to beat this that she will prioritise appointments for me and therefore going back 1st Sept instead of having to wait until January.
I feel so much more positive now as I feel that through all my research, book reading on this and researching the different meds that they see I am not going to give up and therefore are listening to me more and taking me seriously.
They took x9 blood tests as I asked them to research mymigraines as I have them since I was 4yrs old and read that they can trigger SLE.
So despite being a right hobblealong today after being poked and prodded, I am a happy bunny as I feel I have docs and rheumy fighting my corner now!
So just a wee message to everyone, do your research and wave yournotebook in the air at the appointments so they take time and listen. Just like my very first post on here - shout out loud and NEVER give up!
The steriod will increase my appetite so thankgoodness I am on my healthy vegan wholefood thing for the last few weeks !!
Keep smiling my friends and thank you again!
Carol x

woodbon

Hello Carol,

Its great to be positive and it does help you to deal with everything much better. Also, people who are positive do respond better to treatments, noones quite sure why but its been proved.

I hope that you get on better with the steriods.
Lots of love Sue