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Thread: recently diagnosed and cannot find answers

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    Default recently diagnosed and cannot find answers

    Hello. I was diagnosed in March 2016 with rheumatoid arthritis as well as Wegeners. My Rheumatologist put me on methotrexate and after 3 months the side effects were so severe I asked to try something else. I had my first rituxan infusion 2 weeks ago and will start my second one tomorrow. I chose not to take the predisone longer than 2 weeks because of the side effects. My doctor doesn't seem to give me answers and I am so physically mentally spiritually and emotionally exhausted I don't know which way to turn. Does anyone have both WG and RA? My main concern with side effects of both meds I have tried is the severe fatigue and muscle weakness. I'm 43 and have 2 younger children to care for and I am the sole provider. I believe the WG was caught early but I want to try and prevent my condition from worsening. Any advice would be so greatly appreciated. Thanks

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    Hi Kelly

    At 43 I also was diagnosed with RA and then at 45 I was diagnosed with WG. I'm now 51 and doing well.

    Unfortunately if you want to try and prevent your condition from worsening, then you need to remain on the prednisone or some other steroid anti inflammatory.
    Prednisone was my life saver.
    You will probably not feel the effects of the rituxan for another month and this is where the pred helps out because it works almost straight away.

    As for pred, fat puffy cheeks, squinty eyes, pregnant looking stomach, massive stretch marks - these are all part and parcel for most people I'm afraid, but it does get better and the weight gain nearly vanishes, as you reduce to lower amounts.
    What side effects were you getting from the pred? Have you tried Mobic tablets? They didn't work at all for me, but some people I know swear by them.

    Seriously, if you want to get rid of those joint pains, you really need to take what was prescribed. I really don't know how you are doing it otherwise, you must be way stronger than me.

    What are your symptoms for the WG diagnosis?
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    With WG we can't pick and choose the meds we want and don't want. Prednisone is a life saver although the side effects are not good. Get through the beginning and then you can start to lessen the doses and get off completely.
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Thank you for responding ��
    I have tried the mobid as well as celebrex and naproxen without luck. The only pain med my physician will give me is ultram. I work at a cancer center and there is a lot of walking involved. Some days I feel like I can't continue working as the pain is tremendous. As for the pred side effects it's the weight gain and mood swings as well bone loss that I worry about. I have had multiple cortisone shots in the past 2 years for other health related problems and I have been on predisone off and on with my sinus issues. My only symptoms with the WG so far are bloody nose, crusting, phlem, face pain. I literally feel like I have had the most horrible sinus infection that won't go away since October. I know I need to get on a good regimen of meds, I just don't know what that will be. My physician doesn't really explain this to me.

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    I would seek out a doctor who is familiar with WG I was treated by my first doctor for 18 months without much improvement. I then changed doctors and have a WG specialist I did rituximab for 2 years and prednisone. I had my last prednisone and rituximab April 15 and don't take any WG drugs now. The vasculitis foundation has a list of doctors that are specialist with our disorder. Best wishes for you!!

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    Sadly my Rheumatoligst specializes in WG. How often were your infusions and how long were you on the predisone and what milligram? I'm going to talk to my doctor next month and get a regimen going.

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    You need to get back on prednisone asap. When I was diagnosed, I had 75mg daily for a month, reduced to 60mg after the first infusion and by 10 with each of the next 3. The taper continued for another 6 months - so I was on prednisone for 9 months in all. Almost everyone here has gone through a similar regimen. Prednisone is a life saver - it reduces inflammation immediately. Yes, it does have unpleasant side effects and the last stages of the taper are tough .... but you will get through it. I remember the joint pains when I was diagnosed and it was hell. So I sympathize with what you must be going through. I could barely walk before diagnosis and within two days on prednisone I went for a long walk in Liberty park and felt my life coming back.

    I can't imagine a rheumatologist not insisting on prednisone. Maybe you might wish to consult with a vasculitis specialty center, and have them coordinate your care with your doc.

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    I was on prednisone from 4/2012 through 4/2015 started at 80mg per day and before i stopped was at 2.5mg day. I started on Methotrexate for 18 months but the rituximab did so much better for me Infusions started Aug 2013 once a week for 4 weeks and then once every 3 months until April 2015. It was part of a clinical trial at UPenn with Dr Merkel

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    You need a Doctor with experience with Wegs, one that will advise you, and then you need to listen to the Doctor and trust their advice. That means taking the meds and following the treatment plan. If it is not working a good Doctor will work with you to find a better one.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by KellyD View Post
    Sadly my Rheumatoligst specializes in WG. How often were your infusions and how long were you on the predisone and what milligram? I'm going to talk to my doctor next month and get a regimen going.
    Ask your doc how many wegs patients he is treating. If it's a two-digit number, he's not a wegs specialist.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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