Autoimmune and infections

[KRS8]

I am not sure if this is the sort of topic the MDS forum can help with, but I have been having treatment for MDS (red blood cells only at moment) for 6 months now, but still unsure on certain matters. 3 weeks ago I suddenly started with pain in my side which was thought to be a kidney infection. I was given antibiotics which didn't work and the pain is now in my lower abdomen and back. The Dr is unsure what is causing the pain but still thinks it is an infection. He has ordered an ultrasound (could be waiting ages for this!) and changed my antibiotics, and these are still not working. What I was wondering was, does MDS slow down recovery of infections or this only for people with low white blood cells/platelets? Should I call the MDS nurse and ask for advice, or has anyone had similar slow recovery problems. Maybe I need stronger antibiotics? The local GP doesn't seem to have much of clue and I am sick of sleeping in a chair rather than my bed as I am better sitting rather than lying flat! Any advice/observations would be appreciated.

[chris]

Hi Kathy

So sorry to hear you’ve been having this long and painful episode which is badly affecting how you are having to position yourself in order to get some sleep.

Clearly, as it’s Boxing Day and a Bank Holiday tomorrow, you’re not going to be able to see your GP again for a few days so if you are still in pain and worried about it, maybe you could call 111 for advice? After that, maybe you need to ask your GP to prioritise the ultrasound? And also ask if there are any other tests he /she can do to determine if you actually do have an infection? Urine test? C Reactive Protein test?

You mentioned in other posts that you’d had lots of pain in your joints and wondered if it was a side effect of the EPO? How is that now?

I hope you soon find a solution.

Best wishes

Chris

[KRS8]

Hi Chris.
Thank you for your reply. I never thought about the EPO injections. I will certainly look into that. GP opens up on 28th and I will talk to them then.
Thank you again. Its always good to talk!
Kathy