Good day ,
My name is Kyle I am a 30 year old from Canada.I was finally diagnosed on June 23rd this year with WG. It was not the diagnosis I was hoping for however I guess it could be worse.
Everything started for me in Feb of 2014 with joint pain and some sinus problems ( mainly what was called a sinus infection about 4 different times in he next year ). At that time I had a high Rheumatoid factor and elevated inflammation levels in bloodwork. I was sent to rheumatologist for suspected RA. Beforey appointment with Rheumatologist I went back to family doctor in May 2014 with what I suspected as a chest infection however my doctor without a chest xray suspected I had asthma and gave me puffers. Also at that point my Joint pain was unbearable trying to raise a 1.5 year old and waking up everyday with pain so bad I could hardly open door handles and ankle pain that made it difficult to walk . He put me on predizone at that time 30mg tapering down every 5 days. During that span my joint pain got much better. Therefore when I went to rheumatologist I was symptom free. She told me she could not help me when I was on predizone and to remove my self from the pedizone and if it became worse again to get referred back to her. At that time she suspected possible Parvo virus and figured it would run its course. The next few months passed and I felt ok with occasional bad days but it wasn't untIL March of 2015 until joint pain returned regularly. Another trip to family doctor in April and got some bloodwork inflination markers were thru the roof again but that was only bloodwork that was elevated besides a minor elevation in RF. He then referred me back to same rheumatologist who I seen in may of this year. The day I seen her I had wrist pain only. Every day that week my shoulders and knees and ankles were bad but that day only wrists. She met with me for 10 minutes said I had carpal tunel and prescribed me celebrex. This did nothing for me. On June 12th during a trip to Boston to watch some ball games is the day I would say my WG became aggressive. I walked into fenway park normally and by games end could barley walk out. Had to walk out holding onto the wall. The next 3 days of trip I managed to try to enjoy it however it was many hot baths and lots of shortness of breath and joint pain. We arrived back to Nova Scotia on th 16th of June and I went straight to outpatients department where I happened to know the on call doc personally and he started digging. Did lots of bloodwork and I went back home. He had me see an internist the the next day who decided I should have a chest xray among other things. That chest xray has hopefully saved my long term lung function. Top chambers of both lungs where covered in large clumps of cavitative lesions. Here is the kicker the internist who called the xray didn't have it CCed to th ER doc and internist went on vacation. Good thing I am friends with the xray tech who also played hockey with the ER doc because after 3 days of thinking nothing was wrong because I hadn't heard xray tech looked up my scan and immediately called the doctor. I was called in that day which was a Saturday at that time I was told that after a call to rheumatologist in Halifax and looking at xray it was suspected WG. That Saturday I was starting to feel worse and worse I had been walking with a cane now for a week and just generally felt like there was no end in sight. I was told that I needed a CT monday morning and that I would be seeing new rheumatologist on Tuesday back in Halifax. The next 2 days were hell it was the lowest point of my life. I couldnt get myself to bathroom I couldn't open a bottle of water I was in a wheelchair for most of my travelling. That monday morning I was as sick as ever when I went it for CT my friend came over who is xray tech who also works in CT to help with chest scan. He then explained to me that the reason for the scan was because they thought there was a chance that both upper chambers of my lungs were already dead. That was scary they did scan and within 20 minutes told me I was good so far. So we packed up and headed for the rheumatologist 3 hour drive. Rheumatologist I met with this time was amazing. He was through and very good at explaining the whole situation to me. He was still waiting for my ANCA when we first met in the morning it had not been processed yet. So while that was happening he had a skin biopsy done of one of the many lesions on my legs. At that point while waiting for ANCA results he began to talk to me about treatment. He explained that looking at the CT he thinks all lung damage to that point is reversable and that he wants to hit things hard right away. He recommended 60 MG of predizone and Rituxen. Then we spoke about rituxin a bit after he finished explaining that my ANCA had came back positive SD he immediate ordered treatments. By the next Monday June 29th I was back to Halifax for my first RTX treatment. I am doing 2 treatments 2 weeks apart every 6 months for 2 years to start at a dose of 1000ml .
The predizone had me walking without a cane within a week, however rheumatologist warned me that I will feel better on predizone but dnot fool yourself. So first treatment of RTX went well considering I hate needled IVs and bloodtests lol. Then 30 hours after I was back home and had a 6 hour stint of extreme stomach cramping and bowel spasms that had me moaning and in fetal position the whole time. However it lasted almost exactly 6 hours and it turned around so fast it was like a button was switched off I even went to work th next day ( I'm a realtor so no disability or paid sick time .........) the next 2 weeks I had some chest pain off and on but that seemed to be only side effect. Predizone had me feeling great I had started playing occasional round of golf again and was trying to live normal. 2 weeks later on July 22nd I returned to Halifax for my 2nd treatment again infusion went well. Only took 4 hours this time and I felt good afterwords. Since then again it's been a week now I have had daily chest pains tho that seems to be only side effect this time . Predizone is still having me feel decent however I do struggle with sleep lately I can sleep for first 3 hours of night then wide awake.
All in all I hope the RTX kicks me into remission and saves those lungs. Kidney functions have been great so far however I am showing increase in blood in urine every week so we are monitoring that.
This is a worry some desease and I'm glad I found this forum for support. It's great to read that your not alone. The first week after diagnosis I went into quite a depression but seemed to kicked out of it now
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