I see a rheumi every nine months so very lucky. I have a real problem telling her just how I feel. Many days I feel as though I have been beaten, everywhere hurts and although I am able to do many things it is only for short bursts and really struggle lifting etc. Her report to gp says no sign of gca or pmr but she wants me to stay on 10mg of methotrexate and 2mg of steroid. I am just managing at this level and don't ask for other treatment as feel I can't risk any problems. OH having chemo for non Hodgkin's lymphoma. He is doing amazingly well but they have found a patch on his lung and he has to have a non cancerous growth off of his neck. Tricky has he has very low platelets and may need infusion. I am so grateful to our local hospital. Every Doctor and nurse has been so good.
In my report my dexa scan is,lumbar spine -1.1 and hips -1.0. Rheumi said osteopenia so try and keep a careful watch on calcium and Vit D will check in two years. Are these ok for now?
Oh 5lupins
Sending Hugs to you & your husband, is you Consultant aware of your husbands condition or that you are really barely managing? Try writing a note in your diary of what kind of a day you’ve had so you can show your Doctor/Consultant. You may only need an extra Mg or Two of Pred to improve things, it’s most definitely worth discussing.
Kind Regards
MrsN 🌷
Thanks Mrs Nails, I'm not very good at saying how bad I am and bloods are ok. I have had X-rays and echo scan twice so I feel she is not too bad. I find it easier when they can see something. She still wants me to remain on medication so fingers crossed if oh remains ok I will manage.