Health

[Stephanie0210]

So I've only been diagnosed almost a year now and throughout the entire year I've been in pain mostly everyday.

I wanted to ask if most of you have remissions because I've honestly never had one so does that mean the doctor has to reevaluate the medication he's prescribing because it doesn't seem to be working at all.

I'm constantly using heating blankets and using pain medications as though my life depends on it.

Your thoughts?

[Chanpreet_Walia LUPUS UK]

Hi Stephanie0210,

I am sorry to hear you’ve been experiencing a lot of pain over the last year. Have you made the doctor aware of this? If you have, has your doctor prescribed anything for the pain?

It is important you make your doctor aware of your symptoms so that you can receive the correct advice and treatment (if needed). We published a blog article on ‘how to get the most from your medical appointments’ which you may like to read here: lupusuk.org.uk/getting-the-...

You can read our ‘pain management’ blog article at lupusuk.org.uk/pain-managem...

Periods of remission can occur, this is when a patient’s lupus is controlled and their signs and symptoms are reduced. Periods of remission vary from person to person. It is also important to bear in mind that lupus presents differently in each person therefore, no two people will share the exact same experience.

Please let us know how you get on, wishing you all the best.

[Stephanie0210 in reply to Chanpreet_Walia]

Thank you so much. I haven't been able to receive any available appointments so hopefully I see him soon z

[Bebe76]

Hi Stephanie, I just wrote a long reply but it seems the website didn't save it. Short response: I had a similar experience. I was initially on hydroxychloroquine only, and after 2 years finally the rheumy agreed to trial me on azathioprine. Eventually settled on MMF and I am feeling better (but not 100% pain free). It sounds like you may still be flaring and your meds are not working for you. There are many options, so speak to your rheumy!