Wow! 20mg to 6mg in one year! Sounds like you would have missed the moon face as you came down so quickly.
"Prednisone, a corticosteroid that helps calm inflammation, causes “moon face” through weight gain and redistributing fat deposits to areas like the face, back of the neck and abdomen. It typically goes away within a few weeks of stopping prednisone."
I have noticed as I have reduced on pred that my bra is less tight as I lose some of the weight I gain across my back.
ESR ( Erythrocyte sedimentation rate) is an indirect measure of the degree of inflammation present in the body. It actually measures the rate of fall (sedimentation) of erythrocytes (red blood cells) in a tall, thin tube of blood. Results are reported as how many millimetres of clear plasma are present at the top of the column after one hour. Normally, red cells fall slowly, leaving little clear plasma. Increased blood levels of certain proteins (such as fibrinogen or immunoglobulins, which are increased in inflammation) cause the red blood cells to fall more rapidly, increasing the ESR.
The normal range is 0-22 mm/hr for men and 0-29 mm/hr for women. The upper threshold for a normal sed rate value may vary somewhat from one medical practice to another. (Googled and copied and pasted).
Only you can know if you are eating more. Pred can cause weight gain. Many people follow low carb regimes to try and resist this.
I'm not overweight so haven't really tried any diets. I would be very bad at sticking to one!!
When we first came to Germany (47 years ago)!!!!! I missed, of all things, baked beans (I NEVER ate them in England). There are other things too, but we can get almost everything through the post these days.
I can't imagine living without carbs. I like mashed potatoes, pies, fresh rolls, etc etc.
I am thinking of doing low carb do you increase your fat intake as well. I have been looking at dietdoctor site seems to explain it well, but my downfall is bread, rice, pasta potatoes and chocolate so it's not going to be easy. mind you I did well with slimming world so fingers crossed
I am being better behaved now but I still have a weakness for bread and potatoes. I have increased my fat intake. Apparently the paleo diet leaves lots of carbs out. I have tried WW but had to stop things like rice. I hope you have as much success as last time with WW. Let me know how you get on please.YBB
You seem to have had a fairly fast taper. You really ought to slow it down now as when we go below 10mg it is very easy to go below what our body need. We have a couple of taper schedules designed by members which allow dor a very slow taper.
Your weight gain is probably due to the pred causing your appetite to increase and ideally we should really follow a low carb diet whilst on pred. Some of are not that good at doing this hence my 1.5 stone increase!! Again we have plenty of posts on a low car diet for you to read. I will get back to you with the links in a bit unless one of our ambassadors gets there before me.
Welcome again to the forum. Lease do motbhesotate to ask any questions as we were all newbies once even though you have been managing on your own for a year. YBB
Not expecting such a quick response so thank you all very much.
I think I have classic PMR for someone aged 68 like tight and painful upper arms and legs that came on suddenly about a year ago.
Story goes that I was hobbling along behind my wife in a large shopping centre so she suggested I got a walking stick which I did. I then explained that the walking sting was not doing much good and she responded by saying that it was only for visual display as she explained that when I was walking I looked as if I had just shit my pants. My wife is a trained nurse incidentally and I was just an embarrassment to her when out.
Following on from that incident I went to doctor had the blood test and diagnosed as PMR with a start off of 25mg .
What follows is not condoned by my doctor who is none the wiser but I will relate what I did anyway :-
• Tried 25 mg for about 2 weeks with only marginal improvement
• Increased the dose to 30 mg just to kill pain for a couple of weeks
• Doctor said something about immune system attacking muscles !
• I go to gym anyway so started to target specific muscles affected in a very robust manner to what is termed the burn.
• When I say robust I worked the muscles until I was literally crying with pain for about an hour and a half every day at levels which were about half of what I could normally do.
• In addition, I spend half hour in sauna and half hour in steam room after workout which is nirvana when walking or cycling home – no pain whatsoever.
• Over the last year I have used an alternate day system to decrease the pred dosage ie. 25/24 20/19 15/14 on alternate days right down to my current 6/5 dosage that I have been doing over the last year or so. Next month I go to 5/4 and see how it goes.
• I take my pred in morning rather than at night as recommended and supplement with Vit C Vit D Cod Liver Oil plus the usual statins etc
• In addition to the above I enjoy copius amounts of Russian vodka – Russian mind you – which gives the preds a bit of an edge
Anyway I am feeling good now and I wont complain if this is the only pain that I have to ever endure before I pass on.
What prompted me was when doc said the thing about immune system attacking muscle
I expect that I will get response from the PC brigade who only do what their doctors recommend but remember Doctors only cover their asses and aint really that interested and I certainly do not advocate in any way or form what I did to combat the pain I was in
Just to add to the ESR info - some authorities have lowered the top level for women to 22 as well so anything over 20 should be consided as worthy of monitoring if someone doesn't have a cold or some other reason it could be bigh. But this doesn't mean a level of 18 means there is nothing wrong. The range is for a large population of 10,000 or more - not for a single person. You have your normal and it may well be in low single figures and then 18 would be very raised for you.
I will address some of your points though:
"I take my pred in morning rather than at night as recommended " - I have no idea where that idea came from: the recommendation for taking pred is as a single dose in the early morning. Unless it is Rayos/Lodotra which is designed to be taken at night at 10pm so the peak blood level is achieved shortly before the cytokines are shed about 4am. If you don't take it like that there is absolutely no point in paying the extra cost.
I do hope no-one follows your "exercising to the burn" example. That is no longer regarded as a good thing even for healthy people and any trainer who suggests it should be stopped. For someone with an autoimmune disorder it is sheer foolhardiness as it could lead to long term damage. Some experts think that excessive physical exertion may even trigger PMR.
I also found the steam room and sauna livesavers in the 5 years I lived with PMR without any pred.
In PMR and GCA it is not the muscles which are attacked, it is a vasculitis - the effects of poor blood flow do lead to muscle pain. And statins can cause very similar symptoms.
Whilst I don't say don't drink - that would be hypocritical - I doubt your liver thanks you for copious amounts of vodka and in combination with pred and the other things I do hope you get liver tests done now and again.
Story goes that I was hobbling along behind my wife in a large shopping centre so she suggested I got a walking stick which I did. I then explained that the walking sting was not doing much good and she responded by saying that it was only for visual display as she explained that when I was walking I looked as if I had just shit my pants. My wife is a trained nurse incidentally and I was just an embarrassment to her when out.
Normally morning dosage is recommended, surprised you would have been given different instructions. But ppl on long term therapy often adjust the dose timing to suit their own needs as the adrenal glands stop producing cortisol anyway.
What you have done with the intense exercise is usually not possible for people with PMR, but it appears you have been managing. I have found heat very helpful.
Yes, the taper should slow down now in order to give your adrenal glands time to pick up what they need to do. This can take a while, it's not an instantaneous process, so please be mindful and perhaps be a bit kinder to your body at this stage?
Good luck - hope your recovery continues successfully.
Because one of the things the autoimmune disease we call PMR is doing is affecting the ability of muscles to respond to vigorous exercise and slowing down the body's ability to heal from such exercise.
You are right there are different levels of these diseases although as yet not completely proven or demonstrated. I attended at PMR Roadshow about three years ago & they were discussing that very subject. PMRPro is always up to date on that side of PMR/GCA
Just going to a gentle aqua class . 2.5 years diagnosed. Back up to 9 pred after dropping down to 2.5 January in the race to finish that we know is sooooo wrong .
If you had been one of the people who couldn't even walk because of PMR you would know.
Skinnyjonny was a firefighter who climbed in the Himalayas and was training for a marathon when PMR put him in a wheelchair. He puts his recovery to be back and able to manage a 5km run 18 months later down to a very carefully dosed exercise program starting with hydrotherapy.
Unlike Jane fonda...tbe burn guru of the 1980s said-Pain or the burn is not a barrier to push through, it's your body's way if telling you to stop especially when you have a vascular condition that stops blood circulation no matter how hard you push. The muscles are prone to tears and small fibre pulls that don't repair as easily BECAUSE THE BLOOD FLOW ISN'T NORMAL. Elite athletes know this now the burn is not healthy and pushing through the pain barrier with injury or illness is a thing of the past. I don't wish to abuse my body I want to nurture it so that it can carry on repairing itself.
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