Strange symptoms with taper: I’ve been on 13.75mg... - PMRGCAuk

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Strange symptoms with taper

Zareda profile image
11 Replies

I’ve been on 13.75mg of prednisone for 10 days, tapering from 15. Overnight I developed random left ear pain, shooting pains in teeth, jaw pain and tingling in my chin and tenderness in the front of my neck under my jaw. No headaches, vision problems or pain with chewing. Has anyone experienced this during a taper?

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Zareda profile image
Zareda
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11 Replies
Blearyeyed profile image
Blearyeyed

I had these issues but I have GCA not PMR.

I did have similar symptoms for years prior to PMR because I have Neuralgia , often if I get these feelings now it is to do with nerve pain rather than the GCA or PMR , and they can happen more in the first weeks of a taper as my body is struggling trying to deal with doing its job and get used to the chemical change going on as my dose decreases.

Eat light nutritious meals , drink more fluids and increase your vitamins and minerals while tapering, these help reduce side effects if that is what you are experiencing.

Have you tried taking Paracetamol or another painkiller through the day with these pains and did it feel better?

Do you also have any other health issues that could also cause these symptoms ? as sometimes other things we have play up when we reduce any of our medications

It would be a good idea to try the Paracetamol , and give yourself more rest and TLC for a few days more to see if that helps.

Note down your symptoms during this time in a diary , including if it improves with Paracetamol or continues to get worse.

If you have no relief it would be sensible to go to the GP to discuss it , especially if ear and jaw pain were not your original symptoms and ask for them to do your inflammatory markers blood tests to see if you are having an increase in inflammation.

It may be PMR related , but it could be something else , even the weather affecting you, or an infection coming on , whatever the cause it's better to have it checked early and to keep an eye on its progress.

Zareda profile image
Zareda in reply to Blearyeyed

Thanks for your input. I do not have GCA as of now and I really don’t have the particular symptoms he told me to watch for but from what I’ve heard the symptoms can vary.

Blearyeyed profile image
Blearyeyed in reply to Zareda

I notice in your reply to Pro you mentioned Shingles , which was one of the " something else" things that came to mind but you hadn't mentioned red bumps or irritation of the mouth in your post.

I'd suggest contacting the Surgery first thing in the morning and asking for an appointment mentioning that you suspect Shingles as getting that treated quickly is very important.

Try Paracetamol and fluids to help reduce the tingling until you are seen by the GP , and keep away from others whom could catch Shingles from you in the meantime.

You can use a cool pack wrapped well in a cloth to reduce the tingling in your face too , swilling the mouth with plain water or cooled green tea can also help reduce mouth Irritation .

Zareda profile image
Zareda in reply to Blearyeyed

The rheumatologist called me back. He said it doesn’t sound like anything linked to PMR or steroid withdrawal. He does however think it could be shingles from being immunosupressed. He advised me to see primary care dr ASAP. I have appt tomorrow afternoon. It is incredibly painful! Will try the cool compresses and green tea👍

PMRpro profile image
PMRproAmbassador

I would say be watchful - and check with your doctor. It could be temporomandibular joint problems but it could also be GCA affecting your ears via the 8th cranial nerve.

Zareda profile image
Zareda in reply to PMRpro

I’m just a little concerned that it might be shingles. I have tingling and burning in my lip/chin area and some small red bumps forming in a line. My gums and roof of mouth are also irritated. I do have a call into the rheumy so will wait to see what he says.

SheffieldJane profile image
SheffieldJane

I would report these symptoms to your doctor immediately, because of the similarity to GCA symptoms and the potential for an urgent medical situation.

Zareda profile image
Zareda in reply to SheffieldJane

Thanks for your response. The rheumatologist thinks it is shingles and wants me to see primary dr. I actually couldn’t take the pain in my mouth so I’m now at the ER. Hopefully treatment will give me some relief.

SheffieldJane profile image
SheffieldJane

Oh you poor thing! I sincerely hope they can get to the bottom of this and help you!

Zareda profile image
Zareda

Well it’s definitely shingles on my face and in my mouth 😳They started me on valtrex, gave me pain meds, and antibiotic drops for my ear.....it’s in there too. Just another little side effect from prednisone. No wonder we love it but hate it!

Jackoh profile image
Jackoh

Poor you! Glad you’ve got a diagnosis and the medication. I had it last year in between my legs and it was very painful. The antivirals did help a lot.

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