I have been on Pred for fourteen months. I started on 15mgs and got down to 6mgs. When I tried to reduce to 5mgs I started to have severe pains over my right eye . The pain started in the front and went round to the back of my head and neck. I then went back to 6 and it is slightly better. I have had blood tests which are low. Does anyone else have this and will it ever go completely?
Were your blood tests raised at the beginning? Have you any other symptoms such as scalp pain, jaw pain when chewing?
It is possible to develop GCA without the blood tests rising, especially if you are already on pred even at a low dose.
The other, perhaps more likely. possibility is that the drop from 6 to 5mg was simply far too big - no reduction should be more than 10%, that is almost 20%. Pred withdrawal pain is often similar to the illness for which you are taking pred. Also, this is the point at which your body is having to start to make cortisol for itself and if that is not starting to settle down you can have all sorts of funny symptoms.
Stay at 6mg over Christmas - mixing a reduction and stress of any sort is never a good idea - and then try a much slower reduction to 5mg. There is a reduction scheme on the forum if you are interested.
Hello Eileen. Yes my blood tests were raised at the beginning but I have no jaw or scalp pain. I will stick on 6 over Christmas and then refer to your plan in the New Year. Thank you so much for coming back to me so quickly. Incidentally I have also put on 8lbs which I shall also have to address in the New Year!
Tut-tut! ;-)
Try cutting carbs as much as you can - certainly all processed carbs.Worked wonders for me - have lost 17kg in total!
Wow well done Eileen.
Still about 5kg to go to pre-PMR weight, that's a good 10 years ago! Have a favourite outfit I couldn't chuck away as incentive!
You are wonder woman Eileen! I have been reluctant to say out loud how much weight I have gained... 14 kilos!! And that's just since May! And you have lost even more than that! Respect!!
I will make a greater effort. I absolutely hate it. I feel as though I am wearing a fat suit!
Will the pads of fat that have appeared at the back of my neck, under my chin and on my cheeks disappear as the steroids reduce?
No Sheila - not wonder woman! If only!
Yes, the fat will go as the pred dose reduces but it depends when. Mine started to melt away very slowly from the time I changed from one drug to the other but some of that must have been fluid because that is also a problem with pred. The real fat pads were slower and suddenly I looked in the mirror and I had collarbones back! I know that has happened to others too.
I have only lost between 1 and 2 lbs a week - and as soon as I have a week where we go for a pizza (I eat half at the pizzeria and take the rest home, 1/4 for luch the next 2 days) or eat bread for lunch every day I stick. Lunch is usually a big bowl of salad leaves, tomato with olive oil and vinegar dressing - low in calories, almost non-existent carb but very filling. If I have a roll it is only half - more is too much now. Cutting carbs really does stop the hunger pangs a I find.
At my worst I could hardly walk, other reasons, not the weight itself but it contributed to the weight gain, I needed crutches to get to the village which is maybe 300 yards. We go in every day to fetch fresh rolls for OH and we walked a bit further every day, at my pace, or speeded it up a bit. The walk that used to take me the best part of an hour now takes 35 mins. We go every day unless it is raining - and it lifts your mood too which helps.