Been on 5mg pred for approx 6 months previous symptoms sinus only just over a year ago.
Lost hearing in left ear 4 weeks ago other than that been feeling good. Had op for grommet last Sat (without anesethic , long story) turns out badly infected ear. Put on antibiotic , no hearing returned yet bu feeling good. Friday did some work in the garden over did it and used muscles I didn't knw I had. But the pain in my muscles is unbearable far more than just over doing it . Pain killers are not touching it only slight relief I get is for about 6 hours during day after taking pred. This is when I can move. Rest of time it's too painful to get out of chair. These things always happen at weekend when Doc not available !
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bradders66
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Hi Bradders, very hard to tell. Like yourself my WG mainly causes sinus and ear problems (deaf in one ear). I did used to have persistent ear infections when my disease was more active, plus you could be getting some side effects from the antibiotics. It is definitely worth getting in touch with your consultant and getting some tests. It might not be a flare as such but maybe disease not fully under control at the moment. Hope this helps.
I know exactly how you feel with the worry about flares. I think you have a heightened awareness of all your feelings and are constantly on guard. That's how I felt. It does start to fade though as you get to know your body (I didn't understand what that meant at first) and you come down on meds. I now know when I am overdoing it, need to rest etc.
You are right I've been plodding along taking it easy for a while now . So was feeling well enough to do a bit more! And over done it. Need to understand my limits a bit more.
My husband has WG, sinus & ears mainly. He has had two episodes recently of extreme pain, first one caused by walking the dog and the second by coughing. Sound harmless enough activities but by walking the dog and trying to train her not to pull, he pulled muscles which caused extreme pain. Couldn't hardly move - went to docors and checked. It just took so much longer to get better than in a 'normal' person. Second time he had a cough, had pains in his ab muscles then ended up in hospital because of haemorging (can't spell that) in the muscle. Again pain lasted for ages. My point is that it sounds as though you've done too much thinking you can but you suffer afterwards. Little and often I try to get my husband to do - chores that is!! He's on Pred 7mg, Meth 10mg plus of course many others but off Warfarin. Doctor should be able to tell if you've pulled those undiscovered muscles.
I can only say that Iv now been reduced to 5mg of prednisolone and i have p a. I also have developed a bad left ear which is uncommon unless you have wegners. I have to say take it easy and only do a little bit at a time as your muscles are not as strong after being on steriods.....seeing an ent consultant this week and only hope it is my grommit that needs fixing too. i v been waiting for 19 weeks.
I think that's the problem when I'm feeling ok I think I'm my old self again and try and do the stuff I used to. Got to remember I'm going to really suffer afterwards when I do. Lesson learnt this time I think.
thanks bradders, but i am about ready to give up all hope, when i read your story about getting a grommet fitted i thought thats what my gp suggested back in january of this year, but it is up to the ent specialist. my ear is blocked and hearing is impaired and. how did they find out that you needed a grommit fitted and was it sore to get done. i am only 48hours from seeing the ent.
My ENT did hearing test left ear nothing . First suggested I wait 8-12 weeks as he suggested it would clear on its own! Said it wasn't connected to WG as only one ear ( it was ENT that diagnosed my WG in first place) after 3 weeks started getting slight pain and thought I was losing hearing in right ear. Saw him straight away he said right ear was fine left ear had got worse as there was pressure. He decided there and then to put a grommet in under local anesethic. BIG mistake turned out ear badly infected I just wasn't showing usual signs of that. When you have infection local anesethic doesn't penetrate the area properly so in effect I had op without anesethic I was screaming in pain and generally I have high pain threshold . Any way it was expected that once infection cleared up hearing would return. Its 10 days later just finished antibiotics and no change!
Fluid still seeping from ear but it's clear so I assume infection free. Not sure what next course of action will be. I see him again on 25 sept. I get most of my info from here and the Facebook site and know from others that one ear problem is / can be WG related. Some talk of increased meds helping others say it comes and goes others having hearing aids.
I'd like to think our journey back to normal hearing will be easy. Let me know how it goes with your ENT hope he has some easy answers for you.
thank you for that information it is only 24 hours til i see the ent specialist. part of me is wishing it was all over and the other is thinking i can't go on like this any longer. but i will be back at my desk as usual on friday all going well and will keep you posted.
I understand your fear of 'flares' too ...I am on Cell-Cept and Pred 5mgs (recently reduced) and I have suffered from altered hearing (feel like I'm under water) for about 6 months in my right ear, it does fluctuate daily now however and not as bad as it was. This weekend on Saturday I had an awful scare with a copious nosebleed which took 20 mins to stop and another on Sunday which was less severe (not had a nose bleed since being a child some 50 yrs ago! Of course I worry that it is the WG attacking my sinus's as it has attacked my nose...dripping and crusting etc. I'm due in clinic again in October so hopefully my fears will be quashed. I take Tramadol for severe pain which works a treat when I need it. Take care and hope your Docs sort it out for you.
My sinus involvement has always included nose bleeds not as severe now as at the beginning but generally every week or so. And like you I've had the scary ones when your not sure it's ever going to end. Then that awful crusting as well which is every day. My Consultant thinks that's to be expected . It was the severity of the pains in my arms hands and feet that frightened me ths time. But seems to be easing each day. I think I'll ask the doc for tramadol it worked wonders last year when this all started. Maybe I should have some on standby incase it happens again.
Hope your docs appt goes well and he alays your fears.
Hi Brad, thank you for replying....when I blew my nose today a great big black clot came out. I was so scared that I would have another nose bleed...thankfully not. My appt with the Vascy team is not until October (got dates wrong) Been 4 bone scan 2day. Hope you can get effective pain relief because I rely on tramadol if I get severe pain (usually just 1 tablet of 50mgs sorts me out) I wish you well my friend xxx S&J...(that's my dog!)
Those clots are super scary. I find if they get a little stuck it feels like I'm blowing my brains out through my nose. ( lovely conversation we are having). On the brighter side my body pains have subsided for now. Just take pain killers at night at mo re the ear only hurting at night ( no idea what thats about!) . I will definitely be asking for tramadol incase/ when the pains start again. Best be prepared why suffer anymore than we have to. I hope results of your scan are good and no more nose bleeds. Take care Karen x
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I have been to see my specialist about my hearing. Last October I completely lost my hearing in my left ear
