Good evening. I’m really struggling with pain at the moment. I have SLE and sjogren’s which were diagnosed about 10 years ago. I was initially on Hydroxy and Prednisolone. I was on the Prednisone for 2 years as I wasn’t suitable for Azathioprine. I am now also weaned off the Hydroxy about 18 months ago. At my last rhem appointment there was suggestion of connective tissue disease as I have extreme muscle pains. I was given Pregabalin 75mg in the morning and my evening dose is now 150mg. I am due back in 3 months for review. On Friday night just gone I felt as if I had the worse flu ever and was writhing in pain till 3am. I didn’t know where to put myself and just wanted an end to it all. What also concerns me is pain on the left side of my chest, shoulder and neck (this is not new and not cardiac). I have difficulty lifting my arms above my head, my left outer thigh is numb and I am so weak all I can do is fall into my bed after work. My mouth is also badly ulcerated. If anyone even brushes against me I recoil in pain. Sorry I just feel as if I’ve just posted a garbled disjointed message but I am just so sore and miserable. Any thoughts?
Any suggestions appreciated : Good evening. I’m... - LUPUS UK
Any suggestions appreciated
Hi I’ve Lupus SLE and have ups and downs with it all the time, I think you should either see your GP or get an urgent appointment to see consultant again as you shouldn’t have to put up with that amount of pain, so so sorry your going through this at the moment, sending a big hug to you 🤗 xx
Yes thank you for your reply, I will contact my GP tomorrow. It’s so reassuring to know I’m not alone. Thank you x
Coukd I ask lady at lunch what dose of prednisolone are you on?. I think this needs adjusting as your obviously in a bad flare!. Are you due your Rheumy appt?. See if you can get an earlier one by going on cancellation list and good idea to see your GP. Keep us posted and I hope you feel better soon. Xx
Yes of course. I am off the prednisone. I had several years when I was well. I mentioned Azathiaprine but my foggy head tells me it was Methotrexate I wasn’t suitable for (it was one of the two). There was a component of my blood which prevented me from having it. Thank you for your kind reply.
Isabel xx
That's a pity lady at lunch because I think you need your treatment again because of your bad symptoms. Muscle problems need treatment quickly!. This illness waxes and wanes, hard when the good times don't last. Xx
I really think that you need testing for myosotis as the symptoms sound similar.
I have never even heard of this condition. I think I had the muscle blood test at my last appointment but I wasn’t as bad as I am at the moment. Thank you x
It sounds like polymyositis myositis.org
It sounds like you are having a bad flare and need to see a Consuktant ASAP. Go to your doctor or ring your Consultants Sec. I did the latter and was thoroughly checked and given new meds which eased my pain - take someone with you if you are having trouble getting attention, good luck 😉
Do any of your meds give you the ☺️ HAPPIES?
PIP- is there any point? And disabled parking?
Reduction in hydroxy = return of symptoms?
Hydroxychloroquine help
Advice needed: Going back to NHS after going private.
