I started with 40 mg pred about 2 1/2 yrs ago for treatment of pmr. I am currently down to 15 mg. and am on my third week of using a drug named Actemra, which is supposed to reduce the need to take the prednasone. I am taking this injectible every other week. Dr giving me samples until we can get my insurance to approve it, if that happens. It is one of those very, very expensive drugs, about $1500 per dose. Two questions: 1) is anyone else out there taking Actemra...if so, what has your experience been? 2) I have a severe case of balloon face, where my face swells up as a result of taking steroids. At what dosage does this go away? I have also picked up around 30 lbs. since I began taking pred. I am told as you reduce dosage that this tends to go away, but so far I have not seen this. Even with cutting back calories, I have not been able to reduce weight. What has this group's experience been with weight gain and loss?
Weight gain is common with prednisone treatment as it changes the way we metabolise our food. Severely cutting back refined carbs can help a lot.
Sorry, can’t help with Actemra question.
I did really well with actemra. For insurance in U S. needed a GCA diagnosis. No noticeable side effects, and inflammation went to zero in a few months. I was able to get to 5 mg Prednisone, which had been impossible before, even using the DSNS method recommended here. Moon face started to go away at 5 mg. This was all to prepare for surgery. A few months at 5 mg wasn’t enough, and I almost died. After 5 or 6 months at 5 mg, it was successful, and the moon face had almost gone away. Couldn’t take Actemra with surgery, and inflammation returned. Went to 10 mg, and moon face is back. Can’t do Actemra again because of diveritculosis. Need another surgery and another plan. Hope that helps!
Hi there! Sorry l too have no advice about the actemra but have managed to lose a stone since the beginning of the year by following a Weight Watchers plan. l also watch my carbs carefully and limit fruit. My stomach has gone down a bit but think it will be the very last bit of me to reduce.
As for my moon face, it’s slowly going down which is more than l am say a out my ‘buffalo hump’! I’m currently on 10/9mg of prednisone on alternate days.
Best wishes too you.
Susan it sounds like you’ve been through an awful lot! Can I ask why you nearly died? My best wishes too you.
Sounds like you are having some troublesome issues. I will say some prayers for you…sounds like moon face is the least of your concerns.
Elizamc… Please forgive…I am a yankee. How much in pounds is a “stone?”
My experience has been the oposite of yours but the surgery and diverticulitis issues are unique and make things much more difficult. ACTEMRA and all the other biologics did not help me and a few caused side effects… severe itching among other things. MY INSURANCE DID COVER IT. ( USA)
I have no problems with prednisone . Initially I cut carbs, and sugars and lost weight. I’d say I watch my diet carefully but I’d have to do that anyway. I cheat often but I adjust by eating less and more carefully the next days. Ive never gotten moonface or camel back, but my mom had both.
I exercise a lot and my good cholestrol is very high.. maybe that helps. Excessive exercise seems to help my PMR. I have a lot of trouble getting below 15 predisone, but live just about symptom free most of the time. Every case is so unique.
Best of luck to you!
MICHELLE
14 pounds in a stone
Some brilliant dr. raised me from 12 mg Prednisone to 40 mg (“to blast out the inflammation.”) Anybody here can tell you that’s a bad idea. Shortly thereafter, I developed diverticulitis , which led to peritonitis. Don’t know if it was a coincidence, or caused by prednisone hike. After 14 days in the hospital, I was released with a colostomy bag and down to 20 mg prednisone. Two years later, when they tried to reconnect my colon, the tissues wouldn’t knit together, so after a 5- hour operation, they were able to put the bag in another place and stop the bleeding. The second attempt was successful. Thanks for adjing.
If your diagnosis was “only” PMR then 40mg was an excessively high dose to start you at - 15-20mg is the recommended and usual level. This is because PMR is characteristic in responding to such doses and when more is required then it is a sign that MAYBE this isn’t PMR but either large vessel vasculitis or GCA or even another form of inflammatory autoimmune disease. Certainly the fact you have had problems getting the dose down would support that.
It isn’t calories that count when you are on pred - it is carbs. Pred changes the way your body processes them and by far the best way to manage weight when on pred is to cut carbs drastically - especially processed carbs and all low fat diet products. I gained weight in all the usual places when on Medrol - I changed to prednisone and a low carb diet and lost over 35lbs over the next 18 months, including the moonface and midriff bulge that are so common. Last autumn I had to return to 15mg pred from 7mg but by watching carbs I have remained at about the same weight as I was then and even the doctors at the local hospital admit you would not know I am on pred at all, never mind 15mg!
In my experience your dose is still high enough to make losing weight difficult. I did not start losing until I got below 10mg.
I think its really important to consider every single body is unique and different. While all The information and advice on the form is very helpful its crucial to remember that your body and circumstances are unique, and what may be true for one person may not be true for you.
As Anhaga says 14 pounds in a stone. In days gone by back to the age of antiquity weights used to be measured using a stone and that is where the word stone came from. Although there were lots of different stone measurements depending on what was being weighed, it was not until the 1800s when 14 pounds was established. It is now only used for measuring body weight as far as I know. We have all sorts of strange measurements in UK still floating around. Land can be measured in rods still.
Rods, poles and perches … Did you have the red covered exercise books at junior school with all the stuff on the back cover? 
No, we must have had cheapo exercise books. Sounds like a good idea though, hundredweights, chains… I think a lot are still used. Helped with arithmetic though, just like pounds, shillings and pence.
I love the word “quintal”. Which can be used nowadays to refer to a weight equivalent to 100 kg, but used to mean 100 lb.
Wow your problems are major. Since I started prednisone I’ve had my share of problems caused by the prednisone. Like osteoporosis which caused me to break a total of 8 bones in 5 months, I developed a fatty liver and diabetes. The latter 2 are gone now that I’m only taking 1 mg and I’ve lost 55 pounds. But even with all of that I can sit on a toilet and poop without a bag. Your comment about the second time was successful… Did you mean that you no longer have to wear a bag? I hope so. I can see that being demoralizing and dangerous due to infections , etc.
In fact metric does make like a lot easier! I think quintal in UK was the hundred weight. As you say in India for example it is one hundred kilos. It can also be called a centner.