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Thread: New to fourm- just wanted to talk

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    Default New to fourm- just wanted to talk

    Hi All - I found this forum when I was first diagnosed last year in November 2014 and have lurked about, looking for info when I get a flare up or side effect from medication. I am female, and 49 when diagnosed. Was quite lucky it took about a month to diagnosed, but I think I had symptoms for about 6 months prior. I first noticed the joint pain, mainly in my knees which I put down to years of impact sports, then the sweating, which I put down to my age and the constant runny nose, which I put down to my allergies continuing through out the winter. I had been to the Doctor for allergies and runny nose and they gave me Sinutab and other medications but nothing worked. I mentioned at the time joint pain but was told it was just my age etc. Eventually it was the pain in my head and down the right side of my face, blood from my nose which finally I got the referral to a ENT specialist. The pain was worst I have experienced. I was admitted to hospital, diagnosed after a biopsy from my nose with Wegener's and then it was whirlwind of tests MRI, lungs, kidneys etc. Appointment with the Rheumatologist, who told me I was very lucky it was at present only affecting my sinuses and painted a very black picture of the disease which had me in tears for days. I started on 75 mg of Prednisolone and 20 mg of Methotrexate. Everything went along fine, taking medication and monthly appointments. Specialist always painting a black picture and myself always leaving in tears. He started tapering me off steroids, as I had lots of side effects, but generally I was feeling good and my levels supported the tapering. Then I had a flare. I didn't actually know I was having a flare, the pain was all in my ear and I lost about 60% of hearing. I decided to go to a private Rheumatologist, who confirmed after blood tests and another round of tests, yes I was having a flare and increased my Prednisolone again. Anyway, after a period of feeling well and levels good, we have been tapering for the last 6 months and I am now on 20 mg methotrexate and 2.5 mg of Prednisolone, and would you believe week before Christmas I started having another flare. Excessive sweating, the pain in my ear is unbearable and I have blood in mucus when blowing my nose. I have tried to contact my Rheumatologist whom is on leave for the holidays. I am taking pain relief and have increased my Prednisolone myself. I am having a lot of side effects with the drugs, weight gain, moon face, thinning hair and in terrible condition. My Rheumatologist has referred me to ENT for my ear, whom I have appointment at end of January 2016 for grommets to be inserted. Has anybody else had this operation and does it work, or will the hearing loss be permanent. Sometimes I have really good days and think I can live a normal life with the Wegener's and other days the outlook is not so good. Has anybody else had similar experiences.

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    Hi Fiona, Yes, I am a few years older than yourself and have been through similar experiences. My saga goes back 12 months to two years but very similar. I also blamed my joint pain on years of sports at school and then years of hard labour. I believe a lot of the wegeners stories are similar. The prognosis for wegeners is certainly very black, if you listen to all the experts out there but, don't forget that things have changed considerably since the 1970s-80s and you know your case better than anybody else. Common sense is needed, and you have demonstrated that by upping your pred. My rheumy assures me that there is lots not known re the various interactions of various drugs in each individual. He records every comment I make to him, for future reference. I keep a record of all appointments, comments med changes etc. I KNOW it is going to be valuable data down the track. In your case you may look back and see that the last time you tapered off pred at this rate you had a flare. If you taper more slowly next time and all is fine then you have learned something and your body is better for it. Something to consider is that if, say, you taper 5mg of pred when on 75mgs this is a reduction of about 7%. If you drop 5mg when on 10mgs, this is a reduction of 50%. There is plenty of research on pred taper available if you are a reader. A common maintenance dose is 10mgs from what I have been told and read. each case is different. I think a lot of us have the weight gain etc. I think to some degree this is something we need to accept and deal with. In my case I crave sugary rubbish. I hate sugary rubbish, so I try and snack on seaweed crackers or similar with 0 calories to stem the weight gain and satisfy the hunger. Drinking plenty of water also seems to help me. I have found two products from a company called Kingfisher herbs which also help. One is called Mental edge, Ginko, Brahami etc which is designed to improve blood flow to the extremities and one called calm and secure which is to help peaceful sleep. Both are all natural herbs. I discovered them while studying at Uni about 10 years ago. The mental edge keeps my head clearer after taking the pred during the week and then the mtx on the weekend. Do you take anything for the hair loss? Leucovorin is so far working for me. The hearing issue for me is still a problem and getting worse by the day. As I have not got the same story from any two people, I have chosen to do nothing at this stage. Both Ents I have seen tell me that my supposed nerve damage is permanent.... but how come I can hear some days? Who knows. I believe that if your problem is drainage then the grommets may help. Seek a second opinion and weigh it up has been my method so far. I keep thinking that being deaf will be a lot better than being blind....... Hopefully your specialists have seen a lot of cases and has some considerable experience to draw on. Look for the positives in your experience, I'm guessing our "new normal" will sort itself out eventually. good luck with your journey.
    Last edited by Lucky; 12-29-2015 at 03:34 PM.

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    Fiona, hi, others that know more will reply. On different time zones ect.. I just wanted to suggest calling that docs, office as he or she has to have someone on call while on vacation? Again others will respond, with more than what I can give.... Best of luck,though...... Deb.

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    Hi Fiona, I had similar ear pain when first diagnosed. The pain comes from the pressure when the eustachian tubes are blocked. I had grommets inserted but the pressure in my ears expelled the first set. Another op and larger grommets were successful in draining the ears. Hearing loss from this cause is temporary but I also have nerve damage hearing loss which is permanent. You would need to do some tests to determine any nerve damage. Others here talk about taking folic acid to lessen some of the side effects of methotrexate. I was told to do this, just make sure you take it on a different day to the mx, it might help with the hair thinning over time. My understanding is that the prednisolone is important for limiting nerve damage, can you see some other doctor instead of waiting until the end of Jan? Good Luck.

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    Hi Fiona, and JBee, welcome to the forum.

    Your symptoms sounds very familiar to many on here.

    JBee is correct, Folic Acid (folate) is definitely a must if you are taking MTX. I presume that you are also taking this tablet Fiona.

    Where are you from Fiona? Others here, in your area, may be able to point you in the direction of a specialist that can help, whilst yours is away
    Keep Smiling
    Michelle


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    Quote Originally Posted by FionaClark View Post
    first diagnosed last year in November 2014 and have lurked about, looking for info when I get a flare up or side effect from medication.
    Hi Fiona,

    Sounds like you were fortunate to get a quick diagnosis before too much damage had been done. Now you've spent a year trying to get it controlled, with some success. Stay on top of it by watching closely for changes in symptoms as well as keeping an eye out for new symptoms. If the current treatment isn't getting results, don't hesitate to start a discussion with the docs regarding treatment options. Maybe something else will knock it down for good.

    Gary

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    Fiona - As someone mentioned docs - even specialists - have someone covering for them. Call the office today - New Year's Holiday coming up since that might be a harder time to reach someone. Let them know your urgency and reasons Would also let ENT know why you need to be seen soon
    i lost most of my hearing about two years ago but did not have diagnosis at that time -although I did have some Symptons -ENT was clueless as was I. My hear loss is nerve and will not return

    Sorry to hear about you leaving in tears when you see that doc and his 'black" picture - yes, it is a tough and nasty disease but if you read postings here and on other sites everyone is different and some folks do well with treatment. Don't let anyone take your hopes away.
    Last edited by Middlesista; 12-29-2015 at 10:56 PM.

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    Welcome, Fiona! You will feel a lot less alone now having joined in the discussions. The others above have given valuable insights. I have heard of lots of variations with the hearing loss, some get it back and some don't, after having the grommets or general treatments to reduce the inflammation and suppress the disease activity. I have some nerve damage in one ear, but it has gone from being my bad hear to my good ear, as the other one suffered complete erosion of the ear drum after awhile and barely hears at all now, even with a hearing aid. The nerve damaged ear hears quite well with an aid, and I get by with that one ear, although there are more advanced and expensive devices I could get for processing sound coming in through the other ear. I never had grommets because the pressure was so great during my initial ear infection that both drums burst on their own and released the build up fluids. Magically, those holes healed. The destruction of my right ear drum, due to disease activity, happened later, possibly during a flare. Anyway, with all the similarities, it seems to happen a little differently for everyone. I'd guess that with your early diagnosis and having the grommets inserted, you have a chance of minimal damage and getting your hearing back. However, with the frequency and intensity of your flares, I'm wondering if you need a stronger med than MTX, at least for a short time. CTX (cytoxan, cyclophosphamide) or RTX (Rituxin, rituximab) would be the ones to consider. Or a simpler solution might be to raise the level of your pred on a more permanent basis. 2.5 is not a lot to be on as a maintenance dose, though it might work for some. I'm glad you felt comfortable with increasing it yourself. We need to do that sometimes, and it can really help. Also, it bothers me that your docs keep painting a "black" picture of Wegeners.... that really doesn't help at all. Many of us on here have been dealing with it for years and are doing quite well and living fairly normal lives. It is more than vaguely possible that we will live normal lifespans, I feel. You have a good head start with your early dx. Do let us know where you are and where you are being treated..... there may be better alternatives available. Keep in touch!
    Anne, dx'ed April 2011

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    Hi, Fiona.... You must be an Aussie or maybe UK since "grommets" isn't a term we use in the US. Our term for the same thing is "tubes". Both my kids had tubes put in their ears at a young age. The tube goes in your ear drum and is intended to let air flow and the middle ear to drain in order to prevent chronic infections. Its a pretty common surgery for young kids here in the US and hardly any complications or side effects that I know of. Eventually, the tubes fall out on their own. I'm not sure how long it takes for them to fall out, but it seems maybe a couple of years.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    Yes I am taking folic acid, 5 mg. When thinning first started I increased to 3 times a week then daily other than MTX day.. I am from Melbourne, Australia.

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