dizziness and poor balance

[Creamtea]

Hello I havnt posted for a while. But frequently read all your posts. I have had PMR for 3 years and GCA for 1 year. I am taking 4.5 and 4 mg prednisolone on alternate days which I have just reduced from 4.5 daily this past week. When I was commenced on Leflunamide following diagnosis for GCA I felt dizzy and my balance wasnt so good from time to time but nothing very much. However for the last week Ive started feeling dizzy and my balance is poor most of the time. I stagger as if I am drunk. I was thinking that it was the Leflunamide but I am only taking 20mg weekly now. Has anyone any ideas. could it be the reduction of steroids or is it ear problems.

[DorsetLady PMRGCAuk volunteer]

Well as you probably know, GCA itself can cause issues with ears….say maybe it resurfaced as you’ve got lower on the Pred. Any other GCA type symptoms?

Sorry, can’t comment on Leflunamide, never been on it, but sure others will.

Although you may not want to, it might be worth trying an extra mg of Pred for a few days to see if it makes any difference….

or could be an infection?

[Creamtea in reply to DorsetLady]

No i havnt any other GCA symptoms. I may give it a few more days and if doesnt improve may increase the steroid dose for a bit

[jinasc]

Your Ears - research document with result. Follow the link might be of some use.

Suggest you read it, print it and take it to your GP - he will not have seen it was issued late 2019 and we all know what happened early 2020.

rdcu.be/bOZXC Clinical Rheumatology. Original Article:

BTW in the 'Ears' is in the Frequently Asked Questions section - top right hand side of page. Contains a clear explanation by PMRpro.

[Creamtea in reply to jinasc]

Thank you will read it

[Hidden]

I experienced dizzy spells as I got lower. Mine was 6.5, but had to increase 2 weeks ago due to tender temple, tender head and very achy arms. So my thought would be the reduction in Pred that may have brought yours on. What's the other drug used for that you're taking ? I've not been dizzy since increasing.

[Creamtea in reply to Hidden]

Leflunamide is the other drug that I take which is a disease modifying drug. It helps by reducing the amount of steroids that I have to take.

[Hidden in reply to Creamtea]

Oh you poor thing. Take care and hope you feel better soon.

[PMRpro Ambassador]

Dizziness is listed as a side effect of leflunomide, and one that should be reported promptly.

More than half of patients on leflunomide withdrew from treatment because of adverse effects - one is neuropathy and while I don't know for sure, that could lead to dizziness, Is your hearing affected at all?

[Roy46]

I’ve been with GCA for 7 years and suffered the ups and downs. Currently on 7.5 pred. For some months now I’ve had balance problems. My wife says I walk like a drunk, so I’m with you. Had a CT head scan a week ago and the result is that my sinuses are severely blocked and that could cause the balance issue. GP prescribed a week of antibiotics which I started today. If that doesn’t work I’ll be on Betahistine, which I took in 2016 for balance problems and that worked. I thought it was a GCA flare, but thank goodness it’s not. Hope that helps. Happy to go into more detail if needed

[Cosmos22Marigold in reply to Roy46]

Just read your reply regarding dizziness and i have had this for ages so am hoping that mine is due to sinuses also. Ived tried everything but nothing helps. Im also down to 7/8 mgs as I'm on the slow tapering method. Felt ok except for the dizziness. I've just changed my surgery so i will mention it to them when i get my pre assessment next week. Grateful for this site and your reply. Thank you.