Ear ache again

[Jane-s]

Hello, it’s me asking for advice again!I

Had such pain in my back and hips about a month ago that the registrar at Rheumatology sent me for Xrays of hips which showed severe degeneration of spine and moderate of hips. I have to reduce the Prednisolone so have reduced from 15 0 mgms to 12.5 mgms which Idid2 days ago

The last 3 to 4 hours I’ve had earache which seems to be getting worse. I think it’s maybe the GCA as I think this one of the first symptoms I had before I got the diagnosis.

Should I go up to 15 mgms of Prednisolone ? Although I think it will make my back worse., I’d be grateful for advice

[PMRpro Ambassador]

If earache was a presenting symptom then you do need to think about more pred. But why should it make your back worse? Had you had x-rays before? How can they be sure it is the pred?

[Jane-s in reply to PMRpro]

It’s apparently not good for your bones.

[Hidden in reply to Jane-s]

Yes. It can be a side effect. However because it is not standard practice to have a dexa scan as soon as you are dx with pmr or gca then there is always doubt over when the damage occurred. There is evidence that it can deplete bone density but there are ways of managing what doctors refer to as osteopenia via diet, lifestyle and supplements.

Do you know if you had an xray or dexa scan (laying while the polo mint scans you). If the latter you should have some t scores that you should ask Dr for. There may be things that can be done if it's osteopenia/osteoporosis rather than xrays and osteoarthris.

[Jane-s in reply to Hidden]

Thanks PMR Pro and Poopadoopy. Well , I have a pretty damaged spine any way and had decompression of L4 and L5 about 10 years ago. Maybe the extra Prednisolone I had back in October didn’t do my spine a lot of good. Maybe I didn’t actually have PMR then after all so I possibly didn’t need it

But I must protect my sight. It’s like walking on a tightrope!

[Hidden in reply to Jane-s]

I can relate having had surgery at L5 S1 20 years ago and having degeneration of discs and joints above and below there. But pred won't effect that really apart from perhaps helping the pain at higher dose!

I have been on pred for 4 years and my bones were ok in terms of osteoporosis in my first scan 3 years ago and my second one last year. They also overestimated the lower t score because the damage from the surgery etc did mean they couldn't hVe a 100% clear view.

Your sight is the main thing as you say. The osteoarthris will hurt from time to time, or all the time for some, but painkillers can help and I have finally been put on a med for the nerve pain as the back compresses and the disc bulges against the nerve. It does seem to help the pain in my leg. You really need to have a dexa scan to see what your t s ores are. I presume you are on Adcal or similar. Did they put you on alendronic acid or similar?? You can add calcium on your diet and try to ensure you do weight bearing exercise. Perhaps speak to your Dr to clarify exactly what conditions have been investigated and if there is a record of your t scores.

[Hidden in reply to Hidden]

Sorry for the rapid fire questions. 🤣😂🤣

[Jane-s in reply to Hidden]

Thanks Poopadoopy, yes, I’m on Alendronic acid, Calcium and Vitamin D. The registrar suggests Codiene for pain but I don’t want to get ‘spaced out ‘so am just on Paracetamol at present.

I definitely have GCA , just don’t want to risk it flaring on a lower dose of Steroids but 12.5 mgms isn’t very low is it?

[Hidden in reply to Jane-s]

Given the fact you are just over a year into gca and not long into pmr I think it is as low as I would want to be. Especially if you are having any symptoms of either. If you get gca symptoms then make sure you see Dr asap or at least agree you can increase the dose.

The over the counter codeine is only 8mg with 500mg of paracetamol per pill, whereas the prescribed is usually 30mg of codeine so its a big difference if you take 2 pills 4 times a day!

To get better pain relief you could take one tablet of an over the counter dose of co-codamol with one tablet of plain paracetamol. That way you might not get fuzzy head, as only 8mg of codeine overall. If that helps good.... You could do that twice a day with the other 2 doses being plain paracetamol.

I would have the doses with codeine in the morning with breakfast and last thing at night. I hope that makes sense. Please ask if you don't get it. And don't forget to ask for a dexa scan if you haven't had one. If it's osteoarthritis not osteoporosis you may not need alendronic acid, that gave me hip and groin pain. 🌻

[Jane-s in reply to Hidden]

Thanks ,I may try the Co - Codamol tonight. See if it helps

[PMRpro Ambassador in reply to Jane-s]

It is all relative - and if the underlying disease is still active there is a point where it will break through. That could be at 30, 20 or 10 - it will vary and depend on the person and their GCA.

[Jane-s in reply to PMRpro]

Thanks, this disease is so complicated. As you say, affects people in different ways

[PMRpro Ambassador in reply to Jane-s]

What you said sounds more like osteoarthritis than osteopenia/osteoporosis. But there is little point stopping pred if you have PMR/GCA because it won't bring either back to where they were - there are other ways of managing low bone density and activity is best for OA and without pred you may be struggling to do that. And if it is GCA - you run the risk of vision or hearing loss.

I did have a dexascan within a couple of months of starting pred - after over 7 years on pred there was very little change in my bone density and it was still in the range where drug treatment is no required.

[Jane-s in reply to PMRpro]

Thanks PMRPro

[YuliK]

Hi there Jane

Don’t neglect your earache, you may have an infection, wax or water in your ear. Pop into your GP and he can check your ears.

Yulik 😷

🌹🌹

[Jane-s in reply to YuliK]

Thanks Yulik

[Blearyeyed]

With the taper it could be either GCA symptoms returning if you have GCA or withdrawal side effects in the first few days as maybe the 2.5 mg drop was too much for you in one go .

I'd personally return to 15 mg for the week , get your balance back , see if the earache goes and ring for help from the Rheumy or have a GP appointment to get more advice on how you can help both conditions at once.

You may be someone who could benefit from a steroid sparer like Methotrexate if your earache was part of tapering side effects and not a flare.

One extra week will not make a difference to your back , the changes are not instant and knowing what you are looking for , withdrawal or symptom wise, as you go on a slightly less step taper may be of more benefit for your back in the long run.

You would probably be better trying to reduce your dose in smaller jumps down , not the 2.5 mg in one go , but 1 mg over two weeks at a time . You won't get on the reduced steroid dose to help your back issues if you need to keep yoyoing the dose if the taper is too step for you to cope with it.

Smooth smaller steps down often make the taper quicker over all.

If it turns out being a return of GCA issues they will need to work on trying to find some way to help manage your back issues while you still receive enough treatment of some sort to manage the GCA.

[Jane-s in reply to Blearyeyed]

Thank you Blearyeyed. Lots of food for thought.

[SheffieldJane]

Pred actually helps my Osteoarthritis pain. It was a blow when it crept back on lower doses. My last DEXA Scan was fine regarding osteoporosis.

[Squiggie]

Hello. I've had PMR and doc thought I was heading for GCA so after about 2ys I tapered to 1mg. I stopped last August. Recently I had such bad earache, like a corkscrew in ear that GP found an ear infection. Please don't rule out that possibility especially if you might have had a recent virus like I did.

[Jane-s in reply to Squiggie]

Thanks for the suggestion ,Squiggle but I don’t think it’s an infection. Weeks before I had a diagnosis my ear was looked at -“nothing wrong “then to ENT clinic”nothing wrong”. Then the headache.

All stopped with Steroids.

I think it’s the GCA again

A game of Scrabble may help!

[Squiggie in reply to Jane-s]

I hope you get it sorted. My Mum had GCA and eventually cut down to a maintenance of 5mg until she was almost 95yrs. Best of luck..

[Jane-s in reply to Squiggie]

Thanks, Squiggie

[Annie3737 in reply to Squiggie]

I was interested to read your post on earache. Is this considered to be a pre cursory for GCA ? Like you I had bad earache for over 10 yrs ( probably longer) but weeks or months apart. I had my ears inspected 3 times by drs. and every time nothing was found. I couldn’t even touch the outside of my ear as the pain radiated from inside to the outer ear. I was diagnosed with GCA in 2015 and am now almost off steroids at 2mg daily. I have experienced some lesser pain on occasions but not recently. I am concerned now I should be aware if the earache returns it could be a sign of a flare up. Any advice would be most welcome.

[PMRpro Ambassador in reply to Annie3737]

It would be better to ask this as a new post so more people see it.

It is impossible to say really - there are many causes of ear pain and what you describe doesn't sound typical of GCA but who knows.

[Jane-s]

Hi Annie,

Personally I feel that my earache was the first sign that something was wrong but GPS and ENT doctors said my ears were OK . Then I was unable to sing without holding my neck because singing hurt my throat/neck/vocal chords, I don’t know what or why.

When the headache came and never left me my diagnosis was eventually made. Whether all the other symptoms were relevant to the condition I don’t really know (but I think they were.)

I’ve been reducing Prednisolone as my GP and rheumatologist advised and last week went from 15.0 mgms to 12.5 and after 24 hrs the earache came back so am on 13.5mgms for a few days before reducing again.

Hope this is helpful!

[Annie3737]

Thank you Jane for reply. Yes it is difficult to know if these ear pain symptoms are somehow related to GCA . I guess we just have to be vigilant and pick up on our gut feelings. Hope you soon get on top of this beastly condition.