GCA Flareup

[Sally001]

I hope someone can help me, as I feel like I've been thrown to the wolves and I don't know what to do.

I am having a major flare up of PMR and GCA, I have blurred vision and head pains every day for the past 2 weeks but have been feeling awful since February. My body is so sore, plus Iam so tired all of the time, I just feel fed up. When I spoke with my doctor last month he just wanted to put me on more drugs - not the way I want to do this. Anti-depressants he says - what?? Methortrexate to get me off prednisone, I said no to that because if I do have a flare up I need to increase the prednisone again, then I'll have another drug to deal with. I was down to 20 mg for quite some time (the lowest I've been at is 4 mg) but increased it when the flare started in February - I went up to 60 mg for a few days, reduced by 5 mg for a few days, then symptoms came back worse so a few days ago I went up to 90 mg. I know this is extrememly high but when I was first diagnosed in 2011 and the head pains were unreal, that is the dosage the doctor put me on for a short time until it was under control. The scsry part of this is that I've been on 90 mg for 3 days now and I am still getting head pains and pressure in my head) at night and my doctor is away until March 30th. Maybe it is just stressed related, I don't know but I would truly appreciate any words of wisdom.

Thank you!!

[garshe]

Sorry can't help as I have severe COPD, and not your illness. Hopefully someone will be able to give you advice. Good luck xxSheila 💕⚘

[Albertdog]

Sorry to say - but round my way ...it seems par for the course. Without looking up my notes - it's been sometime in 21 since I saw my GP - so you are better than average.

Their pay/pensions and private work seem to be more of a priority for them - same with Nurses and paramedics - I pray I do not have a heart attack (which at 86 is getting more likely) and a DNR on my record with no medication or advice what I, or my wife needs to do for me, I suppose it's one less for them to be concerned about.

So keep pushing - I pray you get some sense from the powers that be - eventually.😥

[suzy-lou]

Hello Sally

It seems that you have really been through the mill and are now reaching out for help. I see that you live in Canada. If your GP 's prescriptions are unsatisfactory, is there anyone else you can ask? Do you have anyone like a counsellor at your GP practice or a respiratory nurse who could listen to your concerns?

I do hope you are able to find help soon. With much love, Suzy

[Sally001 in reply to suzy-lou]

Yes, I will contact the medical help line today. I'm sorry I posted this to the wrong Forum. I also have COPD but thought I was posting to GCA. Thank you suzy-lou for your help.

[suzy-lou in reply to Sally001]

All the best, Sally. I hope you are able to access good support and are feeling better soon x