Disoriented and Dizzy

[clachaig]

Just been diagnosed with PMR/GCA. Initial high dose(60mg) of Pred has been great and alleviated pain and stiffness. However over the past week I have experienced extreme dizziness and disorientation just walking short distances. I am ok again when I sit down but my legs remain very weak.

Are these common side effects and are likely to continue at high dose levels?

Appreciate advice

[DorsetLady PMRGCAuk volunteer]

Quite common on high doses but they should ease off -

a. as your body gets used to Pred, and

b. as you reduce the dose

But the Pred is working and generally making you feel better - so keep that in mind!

[Hidden]

Hi clachaig, I "just" have PMR and found the first few months my legs still had the most horrid weakness and my head in the foggy state by the PMR. It probably was impacted by pred too even at 15mg so I am sure the high doses don't help. The legs do get better but let me know even now if I overdo things. I can't remember who originally called it SDOFD sit down or fall down state a couple of years ago but it's true on occasion. More so the first part!

[SnazzyD]

I felt like that, so much so I had to take it before bed so I could spend the worst of it lying down. The weakness was pretty bad too but gradually reduced with dose.

[Marijo1951]

When I took my first dose (60 mg) I felt the pain and stiffness drain away pretty quickly, and felt close to euphoria. However I soon realised that one thing the pred could not help with was the deathly fatigue. I also had rather bizarre symptoms in the first few weeks such as you describe, but these disappeared after a fairly short time.

[clachaig in reply to Marijo1951]

Thanks to everyone. Looks like this side effect is part of the deal for some of us and we just have to get passed it. Good to know I am not alone out there and that it should get better with lower dose press.

One mor thing did anyone feel that your driving was affected. Feel there is no problem at moment but apprehensive.

Thanks

[PMRpro Ambassador in reply to clachaig]

I felt my driving was affected with PMR - I felt very restricted when overtaking lorries for example. Not dangerously but it made me nervous. All improved over time with pred though so don't really know what it was. Maybe the same thing that makes us so clumsy with PMR, dropping stuff or knocking things over.

[Hidden in reply to PMRpro]

I have noticed my driving confidence had almost got back to its previous levels. I did have a year feeling weird with PMR, then a year with the insulin. I have finally list most of the nervousness. My finger ends hurt more as I have to test my blood more....for all our safety...you should be ok in Italy ....😉

[PMRpro Ambassador in reply to Hidden]

No - here is where you HAVE to be mega confident!!!!!

[Hidden in reply to PMRpro]

I meant safe from my driving

ヽ༼⁰o⁰；༽ノ

[Bridge31 in reply to PMRpro]

I was clumsy before. Twice as bad now. Yesterday a glass of water almost went straight through my hand onto the tiled floor. Better start using plastic like the grandchildren 😏

[PMRpro Ambassador in reply to Bridge31]

It'll improve! Lots of us had the same problem!

[composition]

thankfully I was in error: It is the C reactive protein that is back up to 23. This doesn't have the Sed rate posted yet. Yay!

[PMRpro Ambassador in reply to composition]

Which is probably pretty high - but without knowing your lab's normal range it is difficult to say if it is more than double or much more raised than that. The normal range is usually quoted in brackets after the result.