how often should you see your specialist

[aussie mum]

I was wondering if there is a normal routine for visiting your specialist once you have had a diagnosis & how often everyone has blood tests.

My 18 yr old daughter was diagnosed last year and is not on any medication at the moment as she has not been able to tolerate plaquenil or prednisone. We still have so much to learn about how best to live with SJS.

Thanks,
Aussie Mum

[Victoria05202000]

Aussie Mom,

Hi. I see mine at least every three months.  When I have a flare it was sometimes every month.  Right now I have a lot of issues....so I see them at least every month.  Prednisone didn't work for me either.  Take care!

Vicky

www.sjogrensandme.blogspot.com

[lynnmarie219]

Hi Aussie Mum,

  I see my rheumy and neuro every 3 to 4 months unless there is an issue that I need to be seen sooner! Labs are done as needed of course but checked at least yearly for all of the basics and rechecks....thyroid and glucose may be done on a more routine basis  to monitor my levels more closely....so those vary. 

Is your daughter having any symptoms now......if so...there are other medications she may be able to take to help relieve some of these symptoms to make her feel more comfortable.

[Scottietottie]

Hi aussie Mum 

I only see my rheumy once a year now but if something flares, I go to my GP, and my GP would arrange for me to see the rheumy sooner. I see an opthamologist every 6 months now. In between - other 'ologists' can crop up as and when needed. e.g. I have a urologist I need to see that I haven't been signed off from yet after investigations earlier this year.

I hope your daughter's symptoms are being treated. I could be wrong but I believe there are alternatives to Plaquenil.

Take care - Scottie 

[Patze]

Hi Aussie Mum,

I see the rheumy every 3 months now (used to be every six months) because my body decided to do some new tricks (and my blood work is done a couple of times a year so far).  I guess he wants to see what else it's going to do - even though I'm still sero negative.  Go figure.

Like Pooh, I too see the opthamologist every six months to make sure they stay good to go; the endo, and the pulmonalogist a couple of times a year too - he's a neat guy and doesn't pull the punches.  And there are several other 'ologists that I see when I need to; thankfully once a year or less.

I hope that your daughter does well - please keep us updated on her condition.

Take care -

Patze

[eyeamdry]

I see my rheumy 3 or 4 times a year, with bloodwork and visits done by my GP in between as needed.  Lucy