Faint & dizzy with GCA

[Spanky2019]

Feel guilty asking about my illness when so many others are so ill throughout the world. But here goes... I'm now on 10 mg prednisone. Actemra was stopped a couple weeks b/c I have a cold. Had Boniva i.v. 10 days ago for osteo. The past 7 days I've had 4 episodes of dizziness, nausea & actually fainted twice. Pcp (last Friday phone call)said could be dehydration (I know I was not dehydrated any of the times it's happened. PCP office said I could come into office for ekg this week but don't really want to go into clinic with other sick people. I realized today when it happened that it's only when going from lying down to standing position i.e. getting out of bed or getting up off floor after doing physical therapy home exercises. So I'm assuming blood pressure issue. My BP has been all over the board, high, low at times and normal at times. But the dizziness started same day I had Boniva tx (i.v. every 3 mo). But also started going from 15 mg to 10 mg prednisone that same week. Have not had any GCA symptoms from probably too fast of decrease of pred. Since lower dose pred more pain in miniscus tear knee, ankle cartilage problem. Or could antibiotic (doxycycline) I was on for cold do this? I don't want to go into Dr until April 1st when I need to have labs done. I think one trip is better than 2 into Dr office during C virus risk. Hope this makes sense. Any thoughts?

[Spanky2019]

Hmmm. Just noticed MY old post from 8 months ago complaining g about dizziness. Didn't remember having dizziness before with GCA. ??

[Hidden in reply to Spanky2019]

That's one good thing about the forum...it gives you a record of your symptoms. I used to get surprised at things when/if I saw old posts.

It could be bp, but there are a lot if things going on. If you have stopped actemra did they suggest smaller steps in pred reduction or going back up a bit. I did have nausea, diarrhea and dizziness with a different antibiotic.

Mixtures of meds can be worse too. My BP and new pain meds made me dizzy and like my brain was functioning a few seconds behind, or in front of...reality.

I hope some fellow gca-ers have better advice. 🌻

[FnF36 in reply to Hidden]

Not sure I can help much but since my GCA diagnosis in November I have not experienced any dizziness as described by Spanky. When I move my head upwards to look at the ceiling or sky, I do sometimes have a sensation of dizziness or being unbalanced but when my head returns to normal (or what passes for normal for me!) position the sensation goes. I just put that down to ageing and wear and tear.

However, my wife has very similar experiences as Spanky describes particularly when getting out of bed in the morning. She is on blood pressure meds and others and has been for some years. A recent additional bp med has exacerbated the sensations.

Are you able to have a telephone consultation with your GP rather than going into the clinic?

Hope that helps a little and I wish you well and hope you get resolution.

Keep safe and take care.

[Hidden in reply to FnF36]

I would agree with telephone or Skype consultants ....I cancelled my Dr appt to discuss meds.

Ps. Tell your wife to try BP meds at night....sleep through the dizzy bit. Has really helped me and was suggested by drs.

[FnF36 in reply to Hidden]

Will do, thank you for the suggestion, sounds like a good plan.

[Spanky2019 in reply to FnF36]

Thank you so much for info and advice. Take care.

[PMRpro Ambassador]

mayoclinic.org/diseases-con...

Some of the bisphosphonate infusions list hypotension as a side effect and the fact it started after having the infusion makes it pretty likely that may be the problem. The recommended action is to change position SLOWLY - move from lying to sitting and wait. Then move to the next stage and wait until you feel stable. OH has had to learn to do that!

I realise that being on Actemra means the doctor is trying to reduce your pred dose very quickly. That would be fine - unless the massive change in dose causes other steroid withdrawal symptoms. Try small steps at a time and keep an eye on your BP. It may be changing everything together is the problem.

And an antibiotic DOESN'T help a cold - they are due to viruses, not bacteria.

[Spanky2019 in reply to PMRpro]

Thank you so much. Yeah, lower respiratory symptoms & slight fever but not sure needed antibiotic. Will heed advice on BP & other suggestions. Please take care!

[Blearyeyed]

If you are suffering from blood pressure or heart rate changes from changing position suddenly causing dizziness and near fainting ( known as presyncope) loss of balance , or palpitations you should discuss this with the GP.

These positional symptoms are not things that they specialise in , and most Specialists don't really understand them from my experience , but they are quite common with certain types of heart conditions , BP issues , vascular conditions and while taking certain medications.

Your blood pressure and heart rate has difficulty responding to the sudden change in your position and until it adapts for some people this can cause regular dizzy spells and loss of balance.

Having your electrolytes , including sodium , potassium and magnesium can rule out ( or in ) if you may need to change your salt intake or have a supplement to help. It can happen with low salts not just high ones. If these are low you might be given supplements or asked to drink isotonic drinks or salt tablets. If too high you will be asked to reduce your salt intake.

Sometimes you need an adjustment in your BP medication or change of type of drug. Requesting a 24 HR BP monitor through the local surgery is a good thing to do . You don't need to have this done via the Specialists. They may need to ask you to go for a ECG if they have no recent results from one of these.

You could wait to ask for these tests to be arranged too when you go in on April 1st. If you need to go back and forth for tests you can take precautions , including only arriving just before your appointment and telling reception you need to sit away from the main seating area as you are in a immunity comprised group. You can phone to get results or ask the GP to phone you with them to reduce visits.

This can happen on both high dose steroids or when you are in the Adrenal phase while on Pred for PMR/ GCA because part of its cause is from a slower function of your Autonomic Nervous System , common with many long term illnesses and when the Adrenal / HPA function is not efficient . It can also happen because of blood pooling from slower circulation.

In the meantime , you could take the preventative measures that are given for people who suffer from dizziness on standing / lying for various health issues.

Keep a bottle of water with you at all times.

Have a quick drink of water , a good few gulps before moving out of bed or from a seat if you have been still from sometime . Also have it before getting up from equipment or the floor after exercise.

Move from one position to another more slowly, prepare , always having that drink gulped quite quickly before you go . This includes not turning your head too quickly to look at something or lifting your head too quickly from reading or using a computer.

Use exercise that does not involve movement from sitting to standing or fast movements of the upper body . These can increase the symptoms of dizziness when you finally stop or get up to walk elsewhere.

On getting out of bed it is suggested that you sit up against a pillow slowly , have a drink , move to a seated position on the bed , drink again , stand up , wait before moving and have a drink at the same time then move.

Some people also find improvement using compression clothing , especially if they suffer blood pooling.

Continue gentle exercise is considered a good thing as keeping muscles strong can help reduce how circulation and the nervous system can affect your underlying health issues and reduce sudden headaches and dizziness on movement.

Drinking more fluids can often be a help in general , especially with health issues that cause inflammation , 1.5/ 2 litres a day of fluids can help reduce problems caused by internal dehydration ( you may not be thirsty but still in need of more water ) .

It can feel quite scary or be quite a adjustment in what you do , but you do get used to it.

[Spanky2019 in reply to Blearyeyed]

Thank you so much for the helpful information. Please stay safe.