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Thread: What is remission?

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    Default What is remission?

    I know it takes some peops a long time to acheive remission, but I'm not sure what's counted as remission. I started treatment in December 2014 (having had a wedge resection of my lung in November 2013), firstly prednisolone and some six weeks after IV cyclophosphamide. My main symptoms were pulmonary, breathlessness, nodules and some bigger lesions, two were needle biopsied and one was removed by wedge resection. I also had frequent haemoptysis. I did have a very sore nose, mouth ulcers and earache and sore feet with numbness at times. I didn't necessarily connect all those as I was frequently told they didn't know what was wrong with me. The biopsy of my lung showed granulomatosis tissue and necrotic tissue. In the words of one guy from the local vasculitis team, bits of it looked like Wegener's and bits of it didn't! However I can see from a presentation that someone posted recently this is a common finding in Wegener's, so maybe he should have known that!

    I finished the 6th dose of cyclo in early June. I managed to get down to 10mgs of pred. I see the team this coming week, however, since early July I have been having more haemoptysis, headaches and just generally feeling not so good. My nose is always runny. I don't feel nearly so ill as I did before I started treatment, so that's positive. I was told by a Dr to increase the pred to 20mgs, I telephoned him about my increasing haemoptysis.

    The team I am under now are great but their specialism is pulmonary. The reason you have to wait apparently is so that they can assess how treatment has worked. I haven't seen anybody since my last cyclo. The only investigation I have booked is a lung function test after I see the Dr!

    I really want to get off steroids because I have osteoporosis and I can't have Reclast because my Vit D levels are too low, apparently it won't work if this is the case. I am on Vit D but I have a parathyroid adenoma and my calcium levels are on the high side. The endocrinologist I see said it would have to be removed if they can't treat me because of it. The adenoma also contributes to my osteoporosis. The surgeons don't want to remove the adenoma because of my Wegener's. I can't bring myself to increase my pred to 20mgs again so I mostly take 12.5mgs or at a push 15mgs.

    I am hoping someone can tell me what to expect and what I should ask them. A lot of the time I coast along quite happily in denial and tend to push myself physically probably because of this. On cyclo days I would come home and take the dog out for a walk!

    Lastly, could I be considered in remission if I am still coughing up fresh blood? I would be grateful for any advice.

    Bloom

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    Quote Originally Posted by Bloom View Post
    I
    Lastly, could I be considered in remission if I am still coughing up fresh blood? I would be grateful for any advice.

    Bloom
    Short answer--NO. remission varies according to the doctor you see. Generally it means your symptoms are under control and no new or additional treatment is required or warranted at this time. It may be drug controlled remission if you are still on maintenance drugs or drug free remission if you are off all drugs. Lab results would generally be stable and usually back in normal limits and not suggestive of active disease or symptoms. How you feel is also an important aspect in assessing remission!

    Good luck in getting there soon.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Thanks drz!

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    Hi Bloom, if you're still coughing up fresh blood, then you're in need of more drugs...most likely you should up that dose of pred for starters. You may be a strong candidate for RTX also if it fits with your other conditions. Be proactive & carry on!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Thanks Don, I'm going to ask what my options are this time. I am so grateful that I'm getting treatment that I tend to just accept things.

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    Bloom, after 4.5 years of treatment I really feel like I'm in remission. I've said that before but this time I feel it much more. There is almost nothing coming out of my nose and I cough very little any more. But no doc has called it remission yet, nor have I really asked.... and the fact is that if I am in remission, it is a medically controlled one, as mentioned above, since I'm still on 15mg. of MTX/wk, 12mg. of prednisone daily, and Bactrim DS 3X week. I've been struggling with the pred taper and feel that if I were to cut back significantly or go off of my meds, I'd most certainly have a flare. So the term 'remission' is somewhat subjective. Actual drug-free remission seems fairly uncommon, but has occurred with some forum members. As for the coughing up blood, I'd certainly agree with Don and drz! Probably you need more time for things to resolve, and yes, possibly a change in treatment. Best of luck to you in beating this thing!
    Anne, dx'ed April 2011

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    Hi Bloom,

    I was initialy diagnosed in April 2008 and like a lot of people here have ridden the roller coaster that goes with this illness; however this last February i was shocked to be told that i was in a "stable remission"!! Yippeeeee!

    Prior to that i had been on a 2 year Retuximab infussion regime which seems to have done the trick for me. I have now tapered my pred to the crazy dose of 3.5mg, real unchartered territory for me. I have retired from work, in fact i did that when i was about to start with RTX. I figured that after trying everything else in the way of treatment, this was my last role of the dice and i had to give it every chance. Removing stress from my life has undoubtably helped me.

    I go back to Clinic at the end of this month and am wondering what they are going to tell me??

    As for yourself, well hang on in there, read across this Forum and try and place your illness into a context. Compare your treatment and symptoms to others and above all, especially in the early days, keep a diary of how you feel and what symptoms you are displaying.

    I hope you have a medical team that are experienced with WG, if not then find one!

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    Thanks Annekat, I'm really appreciative both for the advice and the encouragement. I'm probably just expecting things to happen too quickly.
    Also I think on days when you don't feel too good and people say "you look well" (I think that's the pred, giving me a ruddy complexion and swelling my face ��). I think maybe a lot of this is psychological so I make myself do even more!

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    Hi Geoff, thanks for your helpful reply. I am glad you found Rituximab worked, congratulations on achieving remission! I live in the UK too and wondered how often they prescribe Rituximab here. My sister has RA and says they only prescribe it if two treatments regimes have failed.

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    I think I messed up the reply Annekat it appears below Geoff's, I think.
    I'm really glad that things are better for you. I think I maybe had unrealistic expectations also of treatment. My consultant said initially that he hoped to have me of all medication in 18 months. I think though he maybe was just trying to help me accept treatment, I was kind of resistant to it initially because the previous medics made it sound so dire!

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