Hi this is my first time posting a question. This is going to be a long winded question sorry.
Since July last year I started with nose bleeds followed by stuffy blocked nose and ears - this is still continuing now. Then I got pain in my lower left calf muscle then fever started with sweats then ankle swelling; then feeling really unwell and run down no energy. Then loss of appetite. Feet permanently swollen then plantar fasciitis started and burning sensation which turned into.electric shocks. Shortness of breath dizziness feeling and actually being sick - still ongoing on and off. Chest pain. Bruising and rashes to my lower left calf which turned into ulcers. Uveitis twice second time in both eyes. Joint ache and swelling in wrists fingers and elbows. Then I finally got diagnosed with wegeners.
Once I started on steroids the swelling went and everything improved except for chest pain and shallow breathing and my left foot is still numb with pins and needles. Sorry I did say it was long winded!
Anyway after six weeks of steroids I was started on Cyclo iv. The good news is that all my blood results improved and responded well to the steroids and first Cyclo. (Sorry feel really awful for saying that as I am aware that there are still a lot of people still in pain and suffering.) However my blood and protein are still raised in urine and not coming down or improving.
I had my second treatment two weeks ago - I am having it fortnightly. The majority of symptoms listed above have come back. Is this normal; or a flare up; or side effects of cyclo?
I am due my third treatment tomorrow so I will ask the doctor. But I wanted to see what anyone else thought. Any advice and help is really appreciated.