Update on Ingemlb

[ingemlb]

I thought I would start a thread here to keep a running update on my Wegener's journey. There is a detailed overview of how I was diagnosed and what symptoms I have had over the years in the New Member forum.

I was diagnosed on about 28th of January by the Rheumatologist in the hospital I was in for 5 weeks. He called on another Rheumatologist who confirmed the diagnosis. Mostly it was blood markers and tests that led to the diagnosis as all biopsies done (tongue, sinus, stomach, lungs) turned out to be "non-specific" inflammation and not granulomas to be found. To quickly get the Vasculitis (severe joint inflammation) under control I was put on 30mg Prednisolone and that started having an effect immediately. This was whilst tests were still under way to determine best way to treat. I was then dropped to 20mg Pred and put on 10mg of Methotrexate once a week. Immediately the joint pains returned. Pred increased to 25 with no change then increased to 40mg and the pains all settled again.
I was discharged from hospital on 25th of February on 40 mg Pred and 10 Mg MTX and a lot of pain meds. I was by now also on Insulin as the pred had made me diabetic. My symptoms had been: inflammation in joints throughout the body. Massive ulcer on tongue. Red and inflamed eyes. Gastric ulcers. IBD inflammation in the bowels. Bad productive cough also coughing up lots of blood. Patchy Peripheral Neuropathy in both feet. Very bad Sinus inflammation. As lungs seemed good the thoughts are that the phlegm in the airways was from post nasal drip.
The tongue ulcer took nearly 6 weeks to heal. I had not joint pain on leaving hospital. Eyes very soon went back to normal and apart from using Gel each night I have not had any further eye inflammation. Have not coughed up any more blood as I am doing regular sinus rinses since coming home. Still getting rather scabby looking stuff coming out of the nose.
For the last few weeks have had some mild pain behind right knee but knee does not look inflamed as it had on admission to Hospital.
I have managed to wean off all pain meds since coming home. I wanted to be free of them before seeing my Rheumy for my first checkup so that we could figure out if it was safe to start withdrawing from the Pred.
I saw the Rheumy yesterday and he has decreased the Pred from 40 to 30mg and increased the MTX from 10 to 15 mg. As the sinus' aren't budging he also put me on Bactrim DS which caused a fair amount of concern in the Australian Wegener's FB forum. I am still researching. I see my ENT specialist next week and will see what he has to say about the Bactrim DS.
Blood tests are apparently improving. Anca tests were not redone as my Rheumy says they don't change rapidly so he will do them down the track.
Apart from the slight pain behind the knee most of my issues are to do with the PRED. Gaining a lot of weight in my face despite losing weight overall. I still have neuro symptoms and will be seeing the Psychiatrist again in 2 weeks. I have unsteadiness or almost dizzy spells. My sinus as mentioned above are a big issue. I get a lot of gastric spasm and some bowel pains. I make sure I take all medication on a full stomach.
I came home severely constipated and have managed to reverse that situation.
After reading a book recommended on this forum called "Coping with Prednisolone" I have made the following changes to my diet:
1. reduce Salt.
2. Was already avoiding sugar.
3. Was already avoiding white starchy carbs. In fact I have given up grains for now.
4. Was already exercising daily on a treadmill.

So now we will see if the MTX is taking over from the Pred in controlling the Symptoms. Would be ecstatic if I can dump the Pred altogether.

Today my sinus rinse machine arrived. I am hoping that works better than the bottles I was using. Thank you for those on this forum who recommended it. Managed to get one 2nd hand on ebay.

So it's wait and see time. Will update here if issues arise so that I have one place to track my progress.