Hi Fevers related to Lupus

[CRYSTAL11]

Hi all.don’t know if anyone can help.

I get fevers of 40 degrees centigrade every week

I have been firstly to my local hospital then during this last year Addenbrokes in Cambridge

No one can help to discover why and more importantly to stop them.

Has anyone got any ideas on where to go next. I just want my life back

Thanks for reading

[happytulip]

I'd keep pushing your Lupus Nurse specialist for help and advice here. A temp of over 38 degrees warrants a full septic screen. The lupus nurses can ask the Rheumatologist for advice about what to do. It might be beyond the GPs scope of practice.

Addenbrookes Rheumatologist team work very closely with the Immunology team so they might want to talk to them?

[CRYSTAL11 in reply to happytulip]

Thank you. Addenbrokes have just said review next year. Wasn’t sure if I should get back to them first x

[happytulip in reply to CRYSTAL11]

I would. A temp swinging that high is pretty unusual. They might want you to get bloods done when you have another episode.

[CRYSTAL11 in reply to happytulip]

Yes I’m not sure it’s Lupus but Addenbrokes think it is. But they can’t do anything to help me. I can’t take immune suppression medication as I’m allergic to it all. Bit sort of between a rock and a hard place

[Kismetsoul]

I have Lupus and also high temperatures my rheumatologist is stumped by this and has no idea why it's happening. My current bloodwork shows low white blood cells low red blood cells and low platelets , I am now seeing a hematologist and hopefully there will be some kind of resolution. Good luck and gentle hugs

[CRYSTAL11 in reply to Kismetsoul]

Thanks for replying can I ask how long has yours been going on and how frequent are they. I’m on my second this week

[Kismetsoul in reply to CRYSTAL11]

They last about 10days with me and go as high as 103.6°f or 39.77°c. I also take immunosuppressants for my lupus, but I've been on the immunosuppressants for over 10 years and the fevers have only started this year. So far I've had seven attacks of this this year, and oddly enough it's not while I'm having a lupus flare my rheumatologist can't figure out why. If I get any information I will definitely pass it on, if I could be of any further help please don't hesitate to ask. Gentle hugs 🤗

[CRYSTAL11 in reply to Kismetsoul]

So the immune suppression isn’t helping. I can’t tolerate it but they keep wanting me to try again. Yours sounds very similar to mine. I was looking at adult onset stills disease but my rheumatologist said no. It might be something to look at.

[Kismetsoul in reply to CRYSTAL11]

I think I misspoke about something I have been taking the immunosuppressants for over 10 years and they are working I would say okay I also get an infusion of benlysta monthly it's just been this past year that the stupid fevers has started I'm going to look into Still's disease thank you for the heads up. Do you also get the chills with your fever? That is all so new to me

[CRYSTAL11 in reply to Kismetsoul]

Yes chills and sweats. If the temperature goes up over 40 then I get really strange. Not knowing what I’m doing. I mentioned the immune suppression as it doesn’t seem to be stopping the fevers. Yours is really new so there are a lot of things to look at. My rheumatologist thought it may be a infection in my joints. She changed her mind when I reminded her that I had had this for over 20 years. Good luck with your journey. Let me know if you have any luck in finding out what it is 😘😘