Posted , 8 users are following.
Hello again. I wonder if anyone has felt like they have a blocked ear or swimmers ear. I started to noticed this when I began to reduce from 12.5 to 10 mg of prednisone. I am getting very concerned now . I have a call into my rheumatologist abbd waiting to be called back. Thanks for the support here.
1 like, 14 replies
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JanetGarrett sally30484
Posted
@sally30484
Good morning Sally,
I can say I totally relate to your question here. This is been going on since November. I was first diagnosed with PMR and I've been on 15 mg prednisone since October 14th. I did have bronchitis and pneumonia that started at Thanksgiving and ran through early January so I assumed my ears situation was related however every time I was in the ER or the doctor's office it's they look fine. They are clogged, hard to hear, can't pop and sound like a river running through at times. They are still continuing and about a week ago I saw my new PCP and with my allergies and she suggested that I go back to using my Flonase daily which I have just started twice a day. No change yet just wanted to share.
sally30484 JanetGarrett
Posted
Thank you so much. I am in doctors office now waiting for him.I am so scared it's GCA. I am also waiting forcrheumatologist to call back.
It sounds exactly what you describe as your symptoms. I was doing great on 12.5 mg until I went to 10. Thanks for your reply. I really appreciate it.
JanetGarrett sally30484
Posted
@sally30484
Sorry I didn't see your message earlier I've had my head stuck in the oven all afternoon cleaning it. I'm curious as to what your doctor told you. I'll throw this out here you didn't mention it and it's peculiar but what the heck. I've also been having a choking sensation around my throat and difficulty swallowing something we don't think about it comes naturally but when it doesn't and you have to try to do it it's a little unsettling. I did have thyroid surgery twice in the past years and when I had a thyroid and a goiter that made sense but I don't have one anymore. So far my PCP and my endocrinologist and my rheumatologist said it's nothing in their Department. I'm just not sure I have a lot of faith in the rheumatologist at this juncture. I would so love to be able to pop my ears hear something besides the running water and bubbling sound. Hope you got an answer
Janet
sally30484 JanetGarrett
Posted
Hi Janet. Thanks for checking back. My general doctor said therr was no ear infection. I decided to just go to the rheumatologist hoping she would see me. She did see me and di dnt think it was GCA .She told me to go back to the 12.5 dose of prednisone. Exactly a week ago she had lowered me to 10 and that's when I started having fullnesblocked feeling in my right ear. She said my CRP was only .9. Which is down from 3.7 a few months ago. I am having another blood test on Thursday. I have noticed that my ear seems about 75 percent better this afternoon. I hope it's the increased dose I took this morning. I think tomorrow will tell
Interesting that you mentioned about the swallowing and choking because last week when I was seeing her for routine check she asked if I had trouble swallowing. I don't but I thought it was an odd question. Maybe there is a connection you should check out.
It seems like so many other things go along with dealing with this disease.
Let's keep in touch. I would look into your symptoms further.
I forgot to add that I increased my dose back up to 12.5 this morning and I am wondering if that's why my ear feels better.
JanetGarrett sally30484
Posted
Well I'm glad you're seeing Improvement Sally and your ears. Was it your rheumatologist that asked about problems swallowing? Well it looks like tomorrow morning I'll take my first dive from 15 mg to 12.5 against my better judgement and everyone here but if it doesn't go well I will tell him I told you so and will insist on the slower taper. Just so frustrating that this should be such a fight with our doctors. I am in the states. Where are you located? Have a good evening it's been a long day. I'm glad that the GCA has been taken off the table for you. I know I would have been having a lot of severe headaches and eye pain though I had an eye appointment two weeks ago Wednesday and was told my optic nerve looks great.
sally30484 JanetGarrett
Posted
I am in the Boston MA area. I did fine going from 15 to 12.5. The only problem I had going to 10 was my ear and still not sure if it was pred. I guess it's trial and error.
I think you will do fine. I haven't had any pain since the day I started 15 mg pred and it was like a miracle.
Good luck reducing.
JanetGarrett sally30484
Posted
Well I appreciate your optimism Sally and I'm in Richmond Virginia. You may have missed that I also have fibromyalgia and Men a current flare do to forced withdrawal of my hydromorphone so I'm basically without any pain coverage which has flared me and my neuropathy both feet and I have pain symptoms in the neck shoulder upper arm and buttocks area which are the same places of the PMR diagnosis so I'm a little hesitant but I'm going to give it a shot. Will keep you posted. Have a good night. Janet
sally30484 JanetGarrett
Posted
EileenH JanetGarrett
Posted
You really might find your pain problem recedes a bit if you DON'T clean ovens! I still can without a return of pain - and after 14 years I know my PMR rather better than you can yet!!!! Pred only manages teh inflammation and resultant pain ans stiffness. Your muscles remain intolerant of acute exercise and will suffer increased delayed onset muscle soreness and then take far longer to recover. YOU have to do your part too - by pacing and resting. It isn't JUST the dose of pred.
JanetGarrett EileenH
Posted
Touche' Eileen 😉
Of course your point is well taken however due to the grease spill and possibility of Fire when using the oven I really had no other choice. Unfortunately I do not have the self cleaning oven I am used to from when I was married living in my home. It's done yes I'm feeling worse this morning but it is totally separate from the issue of the prednisone elected not to change my dose this morning because of the way I'm feeling. Take care.
Janet
Porgi sally30484
Posted
Yes but I just thought it was either either with the cold we get here or an allergy. Sometimes it's really bad other times less so. I've always had a problem with my ears. Years ago I was advised to stop swimming regularly and told if I didn't I would go deaf.
sally30484 Porgi
Posted
Anhaga sally30484
Posted
This discussion made me think about some threads I've seen over on the HealthUnlocked forum, where there was even a survey done asking people with PMR and GCA about their ears and hearing. I think any PMR/GCA paitient with ear problems that can't be properly explained by something transient like a bad cold should probably follow up. I just went to the HealthUnlocked site now and put in the words GCA and ears in their search box and a number of threads came up.
Anhaga
Posted