I am rarely in pain...

[Zacsmimi]

For which I am SO grateful. I thought that the steroids would just keep the pain at bay but after reading so much I realize that few people have been as fortunate as I am... although I am still at 10- 12 mg daily. I have decided I am not in a hurry to reduce. (My doc will be so pleased! As previously I have pushed to reduce faster!) After the 2 weeks of pain and hell in Jan when diagnosed, I have had almost no pain.

I have been fantastically exhausted, unable to work or focus, MAJOR sleep pattern disruption, was nauseated for 3 months, shakes, loss of appetite for the first month, now I'm starving...(especially for SALT, lately... never used to care for crisps -potato chips, right? - and now I crave them!! ) Emotional, memory issues, irritable, shaky, GERD, thinning dry skin, hamster cheeks, dry eyes, nightmares, sensitive teeth, NEVER feeling that I've had enough sleep regardless of how much I did have... but, rarely pain. I am tired pretty much ALWAYS. Over the past couple of weeks, I feel back/hip pain but it is not debilitating - in fact, its not bad compared to my baseline prior to diagnosis. I don't know if this would be considered a flare. I see my rheumy Monday and will ask for blood tests to compare... he sees me about every 6 weeks. We agreed that the steroid side effects were hitting me harder than the PMR lately, so we had a plan to reduce. I got nervous with the back pain returning so I changed it to every other day (10 then 12 ) until I see him. THoughts?

[DorsetLady PMRGCAuk volunteer]

Hi,

Just as a matter of interest - why do you take 10mg one day and 12mg the next and so on? Is it US Rheumy policy?

[Zacsmimi in reply to DorsetLady]

I currently have 4 mg tabs, and thought I needed to boost up so went with every other day. Only for a week, my doc appt is coming right up

[DorsetLady PMRGCAuk volunteer in reply to Zacsmimi]

Okay, just interested. You obviously get different dosages of Pred in US than we do in UK. Hope everything goes alright with appt next week.

[Hidden]

Ditto Zacsmimi, Often when I read how others are suffering with pain, withdrawal, side effects I feel quite the fraud! My side effects quite outweigh any discomfort I have had, since starting pred, by a mile. As my bloods have always been clear, I also question my diagnosis sometimes if it were't for those undiagnosed days when the symtoms were so pmr. Guess we're just fortunate! Like you I'm in no great hurry to get the dose down as all the evidence is that slowly wins the race.

[PMRpro Ambassador]

Do please ask the rheumy to check your blood electrolytes and tell him about the craving for salt - there could be something else going on besides the PMR. Maybe not - but only looking will provide the answer.

[Zacsmimi in reply to PMRpro]

I did ask but realized too late that all he ordered were the inflammatory markers ( which are perfect )...