GCA AND Flu symptoms, should I increase my Preds?

[cool4bob]

Help needed for a newby,

Reduced down to 40mg Preds Oct 15, and have again experienced double vision 1, 23 Nov, constant tinnitus since last review, night sweats & sleepless nights, left eye still no improvement if not worse, moon face and neck, regular daily headaches relieved with paracetamol.

I had a Flu Vaccine mid Sept.

Since 2 Dec I have chest infection & cough/cold green phlegm, not able to get doctors appointment. Double vision again 11 Dec 2019. I have to keep taking my glasses off to read. Runny eyes. My Optometrist Dr is not returning my calls, I should have had a review before now. Should I increase back up to 45mg Preds or more? Thanks in anticipation.

[Yellowbluebell]

Hi sorry you are having problems. If you are having any vision issues with gca and can not get hold of your doctor we recommend you go to A&E. You can not afford to take risks with your sight. Our resident GCA expert dorsetlady will no doubt be along in a bit to give some more advice but in the meantime my personal opinion would be to up my dose to at least the dose where you had no pain/symptoms. Good luck. Keep us informed on how you get on.YBB

[cool4bob in reply to Yellowbluebell]

YBB, I have updated my profile to give you background, thanks for this site it has a wealth of useful information.

[cool4bob in reply to Yellowbluebell]

YBB, been to Eye Infirmary A&E, loads more tests with ophthalmologist Dr, bloods taken all OK not inflammatory, maybe I have cataracts, I am being transferred to Rheumatologist appointment 24 Feb 2020. Advised to go to my GP and get antibiotics and clear up my chest infection done! Thanks everyone I feel better now. Love this site x

[PMRpro Ambassador]

I think what you describe deserves a trip to the ED/A&E - the GCA may not just have flared up a bit because of the drop in dose but could be getting worse over time or because of the chest infection. That will make the blood markers unreliable but the symptoms are significant really.

It isn't good enough to say "no appointments" - they need to see emergencies and I would class this as an emergency.

[cool4bob in reply to PMRpro]

PMRpro, I have updated my profile to give you background, thanks for this site it has a wealth of useful information.

[SnazzyD]

Hello, sorry you’ve got all this and what a confusing bundle it is. I suppose only you can say whether any of your pre diagnosis symptoms are back as they were. However, Pred can cause sweats and tinnitus as can GCA. Pred can certainly muck up focusing of the eyes, especially when going from one depth of field to another, but this improves slowly with dose decrease. People often complain about getting their glasses changed only to find they stop working soon after. Double vision however should be checked as it is one of the red flags for GCA. If the double vision is quickly remedied by taking off glasses then I’d perhaps not panic so much but say your left eye is getting worse which is concerning.

I was on 40mg for 6 weeks before reduction and as you’re finding, it isn’t fun. I’ve never just put the dose up because I’m ill and I wouldn’t advise taking it into your own hands at these high doses. Are you in the U.K? If you are, your surgery must let you see a GP on the day if it is urgent and if you are getting persistent double vision or pre diagnosis eye symptoms a trip to A&E is reasonable if you’ve exhausted other avenues for prompt assessment. More advice will come I’m sure. Keep us posted.

[cool4bob in reply to SnazzyD]

SnazzyD, I have updated my profile to give you background, thanks for this site it has a wealth of useful information.

[DorsetLady PMRGCAuk volunteer]

Agree with the others I think you need medical attention - as PMRpro says. the “no appointments” stance us not good enough. GCA should be classed as a medical emergency - so if no other option, then A&E/ER visit required.

[cool4bob in reply to DorsetLady]

DorsetLady, I have updated my profile to give you background, thanks for this site it has a wealth of useful information.

[Marijo1951]

I can only reiterate what the others have said. There's a possible risk to your eyesight so go to A&E. I had a couple of possible flares of GCA and each time went to A&E at the hospital where I'm being treated, gave them my hospital number and asked to see somebody from rheumatology. Both times I was treated very thoroughly with the ophthalmologist also being involved.

[Blearyeyed]

Please , please , please contact A and E , or make an appointment with the Emergency Eye Care Clinic service at your closest hospital with this availability as soon as possible.

Swift action saves Sight.

When at the appointment , politely but firmly request that the contact someone from Rheumatology to come down to assess you with them because of your PMR/ GCA diagnosis and treatment as you need proper help with your dose to protect your sight .

If they refuse , tell them that they will need to contact someone from Hospital Executive Management to deal with your complaint instead .

You are being treated inappropriately for you needs , take a friend or advocate with you to help witness and support what you need to do to get the help you require.

Please keep us updated xx

[Orpheus82]

Hi. If you are in the U.K. and your hospital has an Eye casualty then that is the place to contact. You’ve spoken of ‘Optometrist Dr’ but in the U.K. we have ophthalmologists who are hospital based, orthoptists also hospital based and deal with double vision and optometrists, of whom the majority are in the high street with a few in hospitals but they are not doctors. In this scenario you need to be seen in hospital. The larger city hospitals have walk in Eye casualties and those without should see you on the day you phone as this is an ocular emergency. Let us know how you get on.

[cool4bob in reply to Orpheus82]

Orpheous82, thanks should have been ophthalmologist, I’m not one for making spelling mistakes must be the meds:). I spoke to my eye Dr secretary last and they haven’t called me back, I have to call my GP’s to get the result of bloods after which I will go to eye infirmary.

Thanks again

[cool4bob]

I’m in Sunderland Eye Infirmary A& E, just given bloods.

[PMRpro Ambassador in reply to cool4bob]

If you need a good PMR/GCA rheumy - QE in Gateshead is the place to head.

[cool4bob in reply to PMRpro]

I asked and would need a reference from my nhs to get an appointment, cheers

Bob

[Grammy80]

I'm so glad I happened to see your post....I am also a newbie and have more questions than answers. I'm in the states but am guessing A&E is what I would call Emergency Room or Urgent Care...no appointment needed. By all means, as YBB said, seek care when your vision changes.

Finding this group has made a world of difference for me....and I know it will for you. With these folks you are never alone...and they are so caring and informative. This is true empathy.

BUT....you still need to get checked. My best to you....

[cool4bob]

Another thing came out of my meeting with ophthalmologist dr was that my rosuvastin should have been increased from one a week to one a day big sigh of relief from me and if OK after four weeks I can double up as long as as it’s ok and I can work on getting my bad cholesterol down.