GCA Flare

[pomeranion]

My GP has always been very responsive and ordered 60mg. prednisolone for GCA over 10 months now. This last visit I had to ask for a diabetes monitor because of symptoms noticed by my visiting nurse. He complied and ordered one. I have been fluctuating between high and low blood sugar.

He was very concerned with the possible diabetes complication on such a high dose of pred. He reduced my dose from 20 to 19 for 7 days and then another to 18 for 7 days and so forth. I was OK for about 5 days and then I flared big time. Headaches and all PMR and GCA symptoms back again.

I started taking 60mgs. again as soon as possible. Symptoms somewhat relieved. Now what do I do? I will run out of pred. Please advise.

[PMRpro Ambassador]

You very probably didn't need to go all the way back to 60mg. The usual advice for a flare due to overshooting the dose is to add 5mg to the dose where you flared. If it were me, I would try dropping to 30mg immediately. If that is OK, try dropping back to the 20mg that you were OK at before. And don't try going any lower!

[pomeranion in reply to PMRpro]

I think I miss communicated my dosage of pred. I have been on 60mgs. for 10 months. When instructed to reduce I went down to 55 and then flared about 5-6 days later. Resumed 60pred. Much better but headaches still sometimes recurring. Do I need to increase even more? How do I communicate this to my GP? As I said I will run out before a new refill. Sorry not to be coherent. Not entirely my self.

[DorsetLady PMRGCAuk volunteer in reply to pomeranion]

Maybe following advice in link I gave, but increase to 65mg as the ‘recovery’ dose - but you do need to speak to doctor….

And question why they left you at 60mg for 10 months - that’s not usual procedure for GCA, no wonder he was concerned about diabetes…

[PMRpro Ambassador in reply to pomeranion]

You did - at first I thought you meant that and then thought that couldn't be right and you mentioned 20 and 19 which seemed far more likely. Is this under direction from a rheumy? Or are you only under a GP? Either way, you need someone who knows what they are doing and any doctor who leaves a patient with GCA at 60mg for 10 months doesn't.

You say financially Actemra is financially an option? Do you not have insurance to cover it? Genentech have a hardship scheme for some patients who can't finance it - that should be explored.

Nearly a year of 60mg deserves putting the fear of god into someone - but not necessarily you!

[pomeranion in reply to PMRpro]

Thank you for the encouragement to explore further and get a referral to a rheumatologist that specializes in PMR and GCA. Are there any? Are these just UK diseases being addressed? Are there any forums like this elsewhere? So anxious for any information and help. I find it so hard to believe that in the US these diseases aren't being widely treated. If they are I need for a Dr. to diagnose and prescribe a remedy. I've been left on my own for too long. I sent a message to my GP today and hope I can get some answers.

[PMRpro Ambassador in reply to pomeranion]

We definitely have favourite doctors in the UK if someone is able to go privately. And we do know people whose specialist interest is PMR/GCA as that is what they do research in.

Not sure what you mean by "Are these just UK diseases being addressed?" Some of the best research in the past came from the Mayo in Rochester but they do have a very large population with a Scandinavian gene pool. There are US rheumies who are very good at PMR - I met some at an OMERACT meeting. But this is a UK based charity and they run the forum - judging by the number of US and Antipodean contributors we are the primary forum worldwide. It all started through the patient.info forum - also a UK based website for providing reliable information for healthcare professionals - and that gave rise to the charity and this forum. 12 years or so ago there were a couple of US based forums but they died for some reason or other.

[pomeranion in reply to PMRpro]

I wonder if I can find out more from the Mayo Clinic site. Thank you for the possible link. Everyone is so knowledgeable and extremely responsive on this forum. Hope to keep you posted.

[PMRpro Ambassador in reply to pomeranion]

I believe they have a group for PMR but I don't know anything about it. We're knowledgeable because we've had a lot of time to practice and do the background reading, plus we gather all the experiences we hear about and apply that.

[pomeranion in reply to PMRpro]

Thank God!! Keep up the reading so we can all benefit from your knowledge.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you flared, but you probably didn’t need to go as high as 60mg again….but can you clarify a couple of things to ascertain the last dose you felt okay.

How have you reduced from 60mg to 20mg..and did you have any issues with that?

The usual plan to deal with a flare is to add 5mg to the last dose you felt okay [put in the case of GCA you may need slightly more]…stay there for couple of week until all symptoms of flare reduced and then you can drop back down to just above that dose - explained more fully in this link-

healthunlocked.com/pmrgcauk...

As suggested by PMRpro I agree a drop to 30mg as the ‘recovery’ dose would be a good idea. -… and then maybe take a couple of steps down to just above 20mg.

But you do need to discuss with your doctor - not sure he would agree that you dosing at 60mg is a good idea. …and neither is dropping every7 days once you have stabilised again,

[pomeranion in reply to DorsetLady]

I really miscommunicated my pred. dosages. I have been on 60mgs. for 10 months. Conversion 20ML. GP reduce 19ML by mouth every day x 7 days 18ML by mouth every day x 7 days 17ML by mouth x 7 days, etc. I hope this clarifies my dosages. I still feel kind of incoherent. From what I understand my resuming to 20ML or 60mgs. as I have done should relieve my flare.

[DorsetLady PMRGCAuk volunteer in reply to pomeranion]

okay - I think I see what you mean now. But still a bit concerned that you were on such a high dose for 10 months -any reason why?

But reducing every 7 days is not good - and what probably caused the flare. So you still need to speak to your doctor

[pomeranion in reply to DorsetLady]

I discussed the high dosage with my rheumatologist. He questioned his own diagnosis of GCA. Mentioned steroid sparer but maybe not feasible financially. I will need to explore further. Thank you for the suggestion of returning to 60mgs. dosage plus 5 for the flare. I really hesitate. Everyone has put the fear of God in me about the steroids. I really appreciate all of the input here. I don't feel so alone. Sometimes I don't feel like I am thinking clearly.

[Bluey-1 in reply to pomeranion]

Go easy on yourself. You will not be thinking clearly on such high doses of steroids. I barely knew what day it was on 60 mg. I was actually delirious at times and wrote like a five year old, terrible shakes. Do follow up on the advice given. Take care and keep us posted. As a fellow GCA sufferer I’m keen to hear of other’s experiences with this horrible illness. We all seem to respond differently to the illness and treatment.

[DorsetLady PMRGCAuk volunteer in reply to Bluey-1]

Have you read this link from FAQs -

healthunlocked.com/pmrgcauk....

[Bluey-1 in reply to DorsetLady]

Thank you DL. So easy to reply to the poster and not a commentator on this site. I’ve done it before so should know better…

[DorsetLady PMRGCAuk volunteer in reply to Bluey-1]

I meant have you read others stories on their GCA experiences...not commenting on your reply as such.

[Bluey-1 in reply to DorsetLady]

Will do thanks

[PMR2011 in reply to pomeranion]

have you completely elliminated all simple carbs? Potato, bread, sugar, rice etc? Sounds tough and is a bit at first, then you get used to it. Can help reduce or prevent the blood sugar spikes. Sounds like a “reset” is due with a fresh set of eyes on your disease and situation. 60mg for 10 months seems totally irresponsible, then to suddenly have you tapering every 7 days almost seems like they were “covering their butt” as we say. Agree, if you do have GCA and still with symptoms after 10 mo at 60mg then a steroid sparer needs serious consideration. I’ve been on Actemra 3 yrs now and it’s worked very well for me. Good luck.

[Bluey-1]

Thank you