Concerns

[rach1081985]

My consultant seems think cos I'm doing ok... I only need c her one more time next year and thats it....ive been seeing her and other docs since my diagnosis 12 yrs now every year . is this correct as I'm bit concern and its like cos I'm ok and doing well lost weight I'm wasting everyone's time???

[HollyHeski Administrator]

Hi, this is showing as a bit of a pattern, to stable patients with the NHS, sadly.

We've all been through so much to get stable, its left its mark and we need to know we have someone there, if some thing occurs.

I for one, would fight like mad to keep my specialist. Most of the time I am not stable for very long, so a bit different.

I would express my concerns at your appointment next year, and at least find out how to keep the door open?

[rach1081985 in reply to HollyHeski]

Thank u I will doxxx

[veganworld]

Yes, the same thing happened to me. I see my rheumatologist once a year but if I do have any concerns or flare ups I can contact and bring the appointment forward. I found that when I was stable it was okay to be seen yearly. It meant I could just get on with life and almost felt like someone not living with a condition to manage. I went for twenty years before I had a bad enough flare and needed to be seen sooner. The best advice I can give is to make sure you have an arrangement where you can be seen sooner if you should need some help. It is normal though in the NHS if you are stable.

Good luck

Kaz xx

[rach1081985 in reply to veganworld]

Thank u very much xx

[Stereolover]

You aren’t wasting anybody’s time. This is about your health and your body

[rach1081985 in reply to Stereolover]

Thsnk u reassurance

[MaryF Administrator]

Your situation is not unusual, I should insist on keeping a yearly appointment as our condition can be unstable and unpredictable, I would not settle for that myself or for my children. MaryF

[rach1081985 in reply to MaryF]

I will do thank u mary x

[Lure2]

Hi Rach,

I would absolutely fight to keep my Specialist if he is ok on APS and try to see him or her at least once a year. Also do you see a Cardiologist for your heart/lungs today? Many things have happened since 2011.

At that time you were on Rivaroxaban and I wonder if you are still on that anticoagulation and does it help with your symptoms today?

Your eldest child my be around 24 years today if I have counted correct that is.

Best wishes to you and your family!

[rach1081985 in reply to Lure2]

No I dont c any other specialists.... My eldest is 16....im well on rivaroxaban apart from reoccurring thrush.... I have taken rivaroxaban about ,8 yrs....

[Piscesdreamer]

Because autoimmune conditions rarely are stand alone conditions and also medications can affect your organ systems and blood, I get my blood drawn every 6 months.

They check on the health of my liver, kidneys, etc. to catch involvement of other organs early.

They also check my complement levels and screen for other changes that show another auto immune condition beginning like RA Sjogrens, Hashimotos etc.

Also WBC CBC to make sure my white blood cells and platelet counts are normal.

Sorry for the lack of proper terminology I am still working on my civilian medical degree lol