So sorry - me again!

[Janann25]

As I’ve already posted, I had the possibility of GCA - thankfully not - two weeks ago and, having been prescribed 60mg Pred as a precaution for three days, I’ve been trying to taper back to my previous 6.5. For the last three days I’ve taken 8mg but am experiencing a lot of pain - in my neck, both shoulders and both arms. My first thought would normally be a flare but I’m still on more Pred than before. I also still feel very dizzy and shaky. I experienced the dizziness and shaking whilst on high doses at the beginning of this illness 5 years ago but I wouldn’t have though 8mg is enough to cause this. I’m not worried about adrenal issues as I’ve already got a lot of Pred in my system but I just don’t know whether it’s safe to reduce, possibly by 1mg each day until I get back to 6.5mg. Thankfully, my vision is still ok

I have an appointment with my GP on Tuesday but somehow I’ve got to get through the next couple of days.

Again, I’m so sorry to bother you all again but I just don’t know what to do.

Jan

[DorsetLady PMRGCAuk volunteer]

Personally I wouldn’t be attempting to reduce any further, in fact Id be thinking I needed a little more.I’d stay on 8mg until you see GP, it’s only a few days..

[Janann25 in reply to DorsetLady]

Thank you. I was just concerned in case the extra Pred could cause damage. I’ll stay where I am.

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

To be honest, after being on 60mg for three days, there’s not a lot of difference between 8mg & 6.5mg ….in dose terms, but can be in relief of symptoms.

I was on 80mg for 2 weeks, then 60mg for 8 weeks….and didn’t fall to pieces….so maybe a bit blasé about it🤣😂..sorry.

[Janann25 in reply to DorsetLady]

Ah, sounds like I need to put on my “big girl pants “ !!

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

😉…..wouldn’t say that -but old hands like myself have a slightly different view of Pred than newer patients -and many doctors. Didn’t mean to sound as if I was criticising -I wasn’t! Just different perspective.

[PMRpro Ambassador]

If you have pain that is like PMR pain - I wouldn't be reducing or even trying to reduce. You had symptoms that suggested there was a flare of some sort going on - it isn't just reducing the dose too far that will cause a flare, the activity of the underlying autoimmune disorder can also increase and exceed the power of the amount of pred to combat the inflammation created. The result can be a flare.

It can happen for all sorts of reasons - too much excitement (good and bad), physical exertion, illness and accident, even a minor fall will do it. And I believe that the activity of the autoimmune disorder varies over time anyway, forming waves, if you drew a graph it would form a sine wave. The disease activity falls away and then rises again but usually rises to a lower peak the next time round. If you were reducing on a downward portion you may get to a lower dose of pred without trouble - but then the activity goes up again and the pred isn't enough again.

And as DL says, a couple of mg here or there isn't that significant, especially over a short time. If it is the difference between managing the symptoms and not - it is significant in a different way. What you are looking for is good symptom management. Like DL I see it a bit differently as I have needed above 10mg for 80% of the last nearly 13 years on pred and currently am way above that. But I have been able to function for the last 4 years while my husband was ill which was probably what led to the flaring on a constant basis.

[pomeranion in reply to PMRpro]

I just received my temporal biopsy results. Negative with Foci of Medial calcific sclerosis (Monokeberg medial sclerosis). I expect to hear from my Rheumatologist soon. I always read your advice and always find them so informational and compassionate. My main concern is I have received very little relief from the 60mgs. for 2 weeks now. I have added 600mgs. Ibuprofen twice a day for some of the head, scalp, jaw and incision pain. This is probably premature but I thought I would post if there is anymore any of the wonderful people here could contribute. How do you stay so positive?

[PMRpro Ambassador in reply to pomeranion]

Well here you are - you are a rare bird it seems:

cureus.com/articles/35631-m...

Sounds from that as if you will be taken off the pred - pointless if it isn't doing anything anyway - but there doesn't appear to be a protocol for managing it from what I can see. Monckberg's is seen in other situations but dressing up as GCA is very unusual.

Me positive? Don't feel it sometimes but it is what it is, probably 95% of the time or more I am fine just have the odd return to the early years of untreated PMR but I was 15 years younger then and if I was really stuck, OH could help. It could be worse!

[pomeranion in reply to PMRpro]

How can I thank you? I can't wait to direct my Rheumatologist to this site. The explanation is so revealing. It is so consoling I'm not crazy or making up symptoms.Rare bird!!! My family always said (Schultz's Luck) our last name is Schultz. Now if

I can reduce the pain and continue on my tapering journey for the PMR I will be satisfied. I believe I escaped the eye complications because of my instituting prednisolone so quickly. I always have the oral pred. on hand. I will be seeing my Ophthalmologist as soon as possible. My Rheumatologist requested immediate investigation when he ordered temporal biopsy. This could have turned out so differently if I had never found HealthUnlocked. God bless you ALL.