GCA dizziness

[Chopin002]

hello , I am asking this question to help my brother who has just been diagnosed with GCA. He had the classic symptoms so was put on 50 prednisone daily. He is looking to me for help as I have had GCA for 4 years myself. His CRP was 145 and down to 12 already after about 10 days. His problem is severe dizziness. Can’t walk at all. They are going to do a brain scan and a vein biopsy. I thought the temporal biopsy was useless if already taking prednisone . My thoughts are reduce pred to 40 but they want to raise to 60. Any info appreciated .

[123-go]

Hi. The better news is, in my opinion, that your brother’s CRP has come right down. I believe that a temporal artery biopsy is useful up to around two weeks after starting pred but others will be along to comment on that. I wouldn’t even contemplate reducing pred dose but instead follow advice to raise to 60mg.

Your brother may be dehydrated: make sure he is drinking plenty of water.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your brother.

Dizziness is a common side effect of Pred….has he spoken to his doctors about it. … I’m guessing so if they want to raise dose… and he shouldn’t be reducing dose without their agreement. Has he been offered any advice/medication re dizziness?

[SnazzyD]

Did this dizziness exist before or after he started Pred? Is it there all the time?

I know before diagnosis I had increasingly bad motion sickness but that got better once Pred started. My hearing on one side was poorer too and it is known that GCA can affect the ear. However Pred made me feel drunk and uncoordinated at high doses. It would kick in an hour or so after taking Pred and increase to a peak at about 2 hours and then subside over another few hours. I couldn’t walk in a straight line and would have to lie down, a jittery mess. In between times I felt wafty and tired. It was so bad I took it at bedtime in order to sleep through the worst before waking at the crack of dawn a few hours later when the stimulat effect kicked in.

Another issue was that it affected my eyesight in that my ability to change focus on different depths of field was too slow. So if I walked past a hedge say, I couldn’t look at it because my eyes couldn’t cope with the movement. I had to look down and walk slowly. If I looked down at a book and then looked up, the garden would be blurry for a minute and then came into view. I am long sighted too. All this made Pred quite a trial until the dose came down. I can’t remember when it got better though as it was a gradual change.

I don’t know if this rings any bells for him.

[Chopin002 in reply to SnazzyD]

Dizziness started after pred. Seems like it is the cause. Sounds very similar to your experience as he must sit or lay down. Pred took away the headache but brought on the dizziness. Thanks for the info.

[SnazzyD in reply to Chopin002]

Yes, debatably I felt much better before Pred if you take away the burning scalp. Pred knocked me for 6. Fortunately it does get better with reduction but I’m sorry he’s still very much in the high dose hell at the moment.

Just a long shot. Does it get worse when he moves his head quickly? If yes I might have another suggestion.

[Chopin002 in reply to SnazzyD]

He says it comes in waves. It seems it is side effect of pred. They are offering other medications for the dizziness.

[PMRpro Ambassador]

GCA can affect ears too - and it may be that is what the doctors are thinking with increasing the dose rather than lowering it.

healthunlocked.com/pmrgcauk....

I hope it is an artery biopsy - GCA doesn't affect veins! And questionable whether they will see anything after a couple of weeks at 50mg.

[Leafsong66]

I can say that for me higher doses of Pred definitely affected my balance and sense of stability. It did improve on the lower doses eg 15 and below. All the best.

[Meggsy]

I had dizziness on 25mg. Also in bed, when I turned my head or rolled over, everything in my head seemed to swim around. I also had blurred vision. It gradually dissipated as the dose lowered although I did get bouts of lightheadedness now and then.

[Meggsy in reply to Meggsy]

At 5mg I bent down to do up my shoelaces and toppled over sideways. That was possibly due to low adrenal function.

[Chopin002 in reply to Meggsy]

Thanks , I myself have it mildly even at one and a half prednisone , believe adrenal related but never severe at high doses. Hopefully my brother improves with a lower dose.

[Meggsy]

All the best 🤞