User Tag List

Likes Likes:  0
Results 1 to 4 of 4

Thread: Diagnosed June 23rd

  1. #1
    Join Date
    Jul 2015
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Diagnosed June 23rd

    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

  2. #2
    Join Date
    Mar 2014
    Posts
    195
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    Kyle,

    Sorry to hear about all your troubles and the nightmare you have been through. Glad to see that you are up and about, playing golf even! Are you taking any protonics or other meds for acid reflux? When I was on 75mg of Prednisone, I experienced chest pain and being out of breath - the protonics resolved that in short order.

    You may also consider looking up lists of specialists and centers at Vasculitis Foundation .... any good rheumatologist should be glad to work in consultation with a GPA specialist. RTX is effective, and different doctors may follow different treatment regimens. I had 4 rounds, one week apart initially. After that they follow my peripheral B-cell rates and give me an infusion when it goes from 0 to 1%. Getting an infusion every 6 months is also common.

    While on prednisone you will feel great - the hard part may be when you taper below a certain point. It took me several months to get over the prednisone withdrawal - ankle pain came back, as did fatigue and joint stiffness. After 8 months off prednisone, I still have mild stiffness and get tired more easily than before the disease. But I exercise regularly now, and feel pretty good overall. So, give yourself plenty of time to recover - you've been through a lot! All the best.

  3. #3
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to the forum, Kyle. I have the same involvements as you do, lung, sinus, and joints, except no skin lesions, just red spots here and there at times. My lungs were not as bad as yours; I did have the cavitary lesions, but they were not concentrated in certain areas but scattered throughout the lungs, and were apparently small. They were not visible on an x-ray like yours were, but something didn't look quite right to the doc, so I was sent for a CT scan, which showed them clearly. I have never taken RTX, but my lungs were cleared up well, and pretty fast, by CTX (cyclophosphamide). I think if I were in your position with the bad lungs, I would prefer to be given a jump start with CTX while waiting for the RTX to start working. This could be done with IV or with oral pills. I think this is done sometimes, and as Max D says, different docs follow different regimens. But I am not a doctor, and it's also probable that the RTX will be working before you can feel the improvements. In other words, your docs likely know more about it than I do and are able to make the right decisions. It's encouraging to hear that they think your lungs are still able to be saved with a complete turnaround. By that, they may mean the disease activity will be stopped and a significant amount of healing will take place, but I think most with lung involvement do suffer some permanent damage. In my case, my lungs feel just about the same as before I got sick, but according to the lung function tests I get regularly, their capacity has diminished some. It doesn't affect my daily life much, though I may get out of breath a little more easily than before. I wish the best for you through all this, and hope you will keep us posted on a regular basis!
    Anne, dx'ed April 2011

  4. #4
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome KyleB, you're in the right place for knowledge & support. Your experience sounds very familiar inasmuch as many of us have had the disease at least a year before dx high doses of pred that makes us feel better/ruins our sleep/and does its job. So goes the entire process...slow, at times painstakingly, but progressive if one adheres to all the protocols, doesn't get too weird with 'other' fixes, and keeps a great attitude. As you've experienced, none of that is easy. Good on your recovery - your age suggests you will get thru very well along with the drugs. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •