Weird symptoms!

Why back to 10? How long will you stay there? How do you plan your next reduction? Pop it up to 10 for a few days and then back to 5, or start dsns all over again from 10? Do you always pop the pred up that high? Trying to figure this all out...hugs  ps (pmr brain here)--I'm at 7, up from 4.5 where I bombed out with mind and body numbing fatigue to the point where I could barely function; now after 30 days I'm getting ready to reduce to 6.5 by dsns. Always have soreness and stiffness and fatigue in the a.m., seem to perk up around mid afternoon. Thanks!

Thanks for that, a problem shared! A horrible one.....will up the pred a little tomorrow to see if it has any affect....

Don't think it's vertigo, had that years ago, this is different altogether.,..at least the sun is shining. 😊 hope it is where you are. Thanks again.....

When the same thing happened 18 months ago my GP (who is rheumatology trained) said 15mg - where I had intended to try 10mg. And then I did need 15mg - I struggled to reduce to 12mg, was always OK for about 4 or 5 days and then back it came. I'm very lucky - I have doctors who are in agreement with my view: you need what you need. And aren't desperate for me to reduce asap!

A bit back there was a discussion somewhere (on another forum I think) about feeling rubbish in the mornings and improving in the afternoon. I tend to be like that - and we all wondered if it was adrenal function since you produce another spike of cortisol in the afternoon.I'm also very weather-sensitive and last night a biggish storm front with thunder passed over. Coincidence?

No problem at all....we are all here to help each other.....even if we don' t have the answers!😕

Thanks for that, yes I agree, perhaps a survey would help. Like you I don't drive, when like this, my head is also so mushy, well, some days my husband looks at me......I 'be given up explaining!.....also in the last few months I have had ringing in my left ear....don't know if that' s all connected either!........

Thought I might try physio, but only when balance problems have eased...

Thanks again...

I have had dizziness on and off. It seems to coincide with reducing but it settles after a couple of weeks or so on the new dose. I am now at 2mgs. I also have ringing in the ears and it's something I never had before PMR. Is it the PMR or the steroids? I don't know. I hope the dizziness clears up soon. I find it is worse when I am in large stores or supermarkets for any length of time. It was the same when I had ME! 

Wonder if it is the lights? I know lupus patients who have the same problem and it is the lights.

Also I'm going to moan again, the World has become so noisy! Restaurants/shops/hairdressers.....I could go on...😣....

Have you completed the GCA ears survey?

https://patient.info/forums/discuss/research-gca-pmr-601506

I'm not entirely sure the email address for Susan Pugmire is correct though - I think it should be nhs.net.

Darn, didn't work! Have you done the NHS ears in GCA/PMR survey?

https://patient.info/forums/discuss/research-gca-pmr-601506

But the email address isn't nhs point uk, it should be point net

Sensitivity to sound is also suspicious. But yes - restaurants are horrendous in the UK!!!!!

Oh How I agree with you, noise drives me mad, I sometimes feel as if I am becoming a moaning old lady...... (well not that old Lol)

When my husband got his hearing aids the guy was very keen I should have my hearing checked too (yeah right!!!) but I declined politely. If someone uses the lift in our condominium at night I hear them in my sleep  - and we are half way down the building from the lift shaft! 

I am fairly certain it's the lights. I feel really odd after a short time. The upside is I get what I need and I'm off. I prefer to go to small local shops or a smaller supermarket if necessary.

I seek out the quiet ones or ask them to turn down the music if it's feasible. We were away last week and I was in a small tea room where the music was so loud that I said I would only return if they turned down the music. I was told that I only needed to ask.... wish I'd thought. Apparently the regulars just turn it down themselves.

Well , I seem to have started something about noise!.....even a very well known garden centre beginning with N.....has had to put soundproofing in the ceiling because people stopped going, they were all shouting at each other! It was previously like a lots of shops etc, built like inside of an aircraft hanger!!......

While I still Moaning, what about some programmes with screaming audiences......now I know I'm getting old!!😕

Yes, done that, sent it off......thank you.

Yes - but how are you supposed to know? Most places would tell you the regulars like it...

Some people (without pmr) react in stores to flourecent lights--they feel woozy, weak, sick, "off".  Takes a while to wear off. I feel this way, esp. big box stores with a lot of fluorescent lights and plastic stuff.

Jan, I do hope your chiropractor is not "cracking" your neck. This can cause dizziness or even a stroke. Why: because there are small arteries passing through small openings in the neck vertebrae. Sudden twisting or manipulating can "shred" these arteries releasing plaque into the brain.

No, Karenjaninaz, he doesnt.    He is very gentle and just does a gentle touch massage on my muscles.   No manipulation !   Thank you for your concern.

I think it's called 'Grumpy Old People Syndrome'. Can start around 50 years with some people. Improves with age in some people when their hearing diminishes and the volume needs to be turned up again! A big dilemma for shops and restaurants when they have a mixed age group😀😄 I've joined the Action for No Music in Shops brigade. 

Exactly......

Never liked so much noise in restaurants that you and your companions have to be yelling at each other. Lately it seems new places have lots of hard, echoey surfaces, presumably for ease of cleanliness, but it diminishes the pleasure of eating out. 😕

Another of my grumps. I think it's partly because my hearing is impaired by the tinnitus.

Silver49, my wife is complaining more about my lack of hearing, I have tinnitus also and I do think it is worse since I have been taking Pred. Hoping it is better on lower doses. Thinking positive and smiling. 🙂

I didn't have tinnitus before taking prednisolone, Michdonn. At least if I did I wasn't aware of it. I'm on 2mgs and it's no better. I'm now wondering if  it's the PMR. Ironically, my husband had also been complaining about my lack of hearing but now he is having problems and complains that I speak too quietly. It was never a problem previously!!

Silver 49, just the opposite for me, I get told all the time to stop hollering and I wear a headset to watch TV. So I have hearing damage. Oh well there are much worse things. I thinking positive and keep it smile on my face. Rebuilding an old piece of furniture today and having a ball. 🙂

I put the sub titles on. Furniture project sounds interesting. I hope it goes well.

 

Thanks Silver49, looks good, will see, when I take the clamps off. Always great fun to repair and rebuild old furniture. The craftsmanship in the old furniture is so good, it was made to last a lifetime. Smiling 🙂

I had some hearing loss before PMR/pred.  It has increased, especially this year during the time I was in the hospital getting knee replacement and recovering from bleeding ulcers.  I remember lying in bed surrounded by doctors talking and I couldn’t hear and said so.  Since, then, hearing worse, like restaurants as you mentioned, TV on highest level, and people that don’t hear me speak.  My original theory was that pred seems to dry out my body, especially the ears.  I delight the few time ear wax comes out.  I have not had the ears washed or made Dr. appt. yet.  Too busy attending to other issues.  I started on15 mgs Jan 2017 and have been on 6 mgs since Jan 2017.  Just reduced to 5 1/2 mgs this week, the very slow way.

meant to say started on 15 mgs Jan 2016

I can sympathise. I'm not feeling as confident as I did previously that this will resolve as I am now on 2mg with no improvement. I am prone to having wax in my ears and having them syringed but I'll hang on to the fact that you mention the steroids may be drying up the ear and it may yet resolve. Thank you.

Get your hearing tested! David's hearing went equally on both sides due to chemotherapy and his NHS aids were hopeless - they were issued about 18 years ago - and were also so uncomfortable he wouldn't wear them all the time! So I nagged until he went for a hearing test and even HE realised there had been a major deterioration - it was awful, it hurt me to listen to the TV at the level he had it and I was fed up of repeating everything I said 3 or 4 times. And then being told not to shout! His current top-of-the-range aids would have paid for a nice holiday but boy, they are worth every cent!!!! And he wears them almost all the time...

I've had a lot of wax during PMR - but it has improved now I am at lower doses. I don't think it is the pred - happened with PMR no pred too.

Thank you, Eileen. That may explain part of the problem.

Strange how we argue at a certain age who is going deaf and who isn't......my husband won't admit the TV is up loud, but like you it is for me.......and feeling like I am at thee moment.......mushy head/whistling in ear/drained....well....told him I will divorce him........cruelty by noise!.......😉......

Much prefer to be in summerhouse with radio.......each to their own....

Hope all is OK with you and yours......