Should I go up for a week?

[Dypdi]

HI everyone

I have not often written to this support but now I need your advice. I have GCA & PMR for the past 21/2 years. My left eye (where the biopsy was done) is blurry & I have had sharp pains in head lasting only seconds. After starting 70mg pred & once returning to 60mg, am now down to 7.5mg. I have been so much better. I have been through the mill (have't we all) Shingles, Post herpetic Nuralgia (still have) pneumonia, massive pulmonary embolism, and other stuff. Most of which I think was not helped by the preds. I read recently on this support of going up 5mg for a week and then back to my present dose. Should I do that?

Drs are not easy at moment, busy holiday area, insufficient staff & hospital 25 miles away and eye hosp 50 miles away!

I don't want to over react as that is how they put me back on 60mg from 9mg over 18 months ago. Have really been taking it easy and going down slowly.

x

Di

[SnazzyD]

Hello. Oh what a worry for you. If this was me I’d go to my emergency dept or anywhere I can be seen relatively immediately. The reason is that a sudden change in eyesight, assuming this isn’t normal for you, demands urgent assessment. It could be for a completely different diagnosis, not GCA but just as pressing. If you’re having a proper GCA flare I think 5mg is likely insufficient but I suspect the thought of another high dose fills you with horror. If it was, given your history a doc needs to make the decision not you on your own. However, it would be a shame to have your sight compromised after all this time and effort for want of nipping in the bud something completely different eg. Glaucoma amongst others.

[Dypdi in reply to SnazzyD]

Thank you so much. I just don't want to over re act as before. Will try surgery this evening, only 10 miles away!! Thank you.

x

Di

[Hidden in reply to Dypdi]

Don't be put off. You need reassurance and treatment if required. 🌻

[HeronNS]

The short sharp pain makes me think of trigeminal neuralgia. Is the blurred vision staying or does it go away for a while, like the sharp pains? I agree with SnazzyD, better safe than sorry.

Someone experienced with GCA symptoms should be along eventually. I don't know if it's always necessary to go all the way back to the beginning if symptoms start to develop again, or maybe simply back to a little above the place where you last felt well?

[Dypdi in reply to HeronNS]

Thank you. The blurriness is staying but only in the left eye & not too bad. Have phoned DR's & they were not at all helpful (receptionist) but said I should go to Camarthan 50 miles away as they did not have the correct equipment. Hate the thought of that so will wait for other help from here. Thank you once again

x

Di

[DorsetLady PMRGCAuk volunteer]

Hi,

As SnazzyD says this needs to be checked by doctor. I doubt it’s GCA related after all this time but please do get advice. A 25 mile drive to A&E may be a bore, but I think it’s necessary.

[Dypdi in reply to DorsetLady]

Thank you everyone. I did go to A/E but at Withybush 25 miles away. After a wait of 4 hours got seen and go back up to 20mg but after my fear of further complications at this dose, agreed 12.5 to see how it goes but may have to go up. Dr did not check me over in any way. Arrived back home mid night exhausted to take the extra 5 mg and then off cause had difficulty sleeping....hey ho, but I am still here. Thank you to everyone for your support..

[Sho-Sho]

I was diagnosed with GCA 3 years ago, now on 6.5mg having stayed at 7.5 for 10 months as didn't feel well enough to continue tapering. I still get sudden short pains near the biopsy area (the biopsy was positive), and blurry eyes sometimes, and intermittent head pain, but it then passes. My Rheumi is not too concerned as bloods OK (I know that this is not everything). If I overdo things this is when I usually experience it, I then rest and everything settles down. I am tapering very slowly by .5mg over 6 or 7 weeks as she would like me to try to get to 5.0 if possible but at my own pace.

But if I were you I would definitely see the doctor for reassurance & advice.

[Dypdi in reply to Sho-Sho]

Thank you so much. I believe I am at this stage as yourself and would not mind staying at 7.5 as have felt so human and able to lead practically a normal life. It is good (for me) not yourself that you have experienced the same kind of symptons. Yhank you. Di