Weight Loss since tapering

[Brears]

I’ve managed to taper down to 2 mg still lot of joint pain in shoulders, tops of arms hips etc. Was advised to take 1 mg every other day but got too much of a flare up to cope.Whats worrying is the amount of weight I’ve recently lost.Not that I should complain 2 years ago on 20 mg of prednisone I gained over 1 stone. The excess weight has come off so quickly.Just worried if I should consult my GP. Is this normal or cause for concern?

[piglette]

It does sound as if you are on too low a dose. If you are losing weight for no apparent reason you should visit your GP.

[SnazzyD]

Hello, any unexplained weight loss ought to be investigated. Is your weight loss in numbers or your shape or both? Is it reflected all over or in certain places? Have you lost lots of muscle?

[PMRpro Ambassador]

Everyone is different about losing their pred-associated weight. However, rapid weight loss can also be a sign of adrenal insufficiency so i think I would speak to the GP and ask them to check your basal cortisol levels to see if they are still very low.

How fast have you reduced since 5mg?

[Brears in reply to PMRpro]

Hi I’ve reduced gradually 5 mg then 4 mg taken months I saw a specialist a few months ago who told me to stop immediately said the PMR had left my body.Crazy when I’m suffering pain in my shoulders upper arms and top of one leg.I was taking 1 mg every other day.Dorset Lady suggested increasing to 2 mg this helped. Over 30 months since I was placed on 20 mg per day.I put on a lot of weight mainly on my waist line and stomach.Im going to have to call in the surgery tomorrow it’s hopeless no one answers the phone line.Just worried it’s bone cancer but I’ve mentioned this before and they to,d me why did I think this, only by researching online.

[PMRpro Ambassador in reply to Brears]

"I saw a specialist a few months ago who told me to stop immediately said the PMR had left my body."

Apart from the fact she can't know - not until you have reduced to zero for 6 months - was she trying to make you really ill? You NEVER stop long term steroids suddenly - if your adrenal function hasn't returned it could kill you and certainly send you to hospital.

That is appalling.

[Brears in reply to PMRpro]

Hi I asked the doctor Managed to get a face to face appointment about getting g cortisol levels checked.I came down slowly from 5 mg to 4 mg for a month then slowly reducing.

[DorsetLady PMRGCAuk volunteer]

Have replied to PM

[Karendeena]

Hi Brears, exactly the same thing happened to me. I put some weight on when I first started on pred at 15mg, once I started the taper (1mg every couple of weeks) I lost weight rapidly, I mean a stone in several weeks, I felt awful and my muscles in my arms seem to have waisted. K paid to see a rheumatologist and he told me my GP had tapered me too quickly! The rheumatologist put me back on 5mg daily with a 1mg taper every 6 weeks. My ESR has returned to normal for the first time in 12 months and my weight has stableised. I feel a bit weird when I first drop 1mg but I am persevering

[Brears in reply to Karendeena]

Hi Thanks so much for your response at 15 mg I piled weight on which I knew would happen.Im thinking it could be more muscle loss I sent a pic to a friend she was shocked and said go to your doctor.Ive been phoning the surgery constantly no reply so I’m going there and just walk in. I’ve had a decent nights sleep I’ve taken liquid morphine which I’ve left alone.Ive increased to 2 mg my doctor whom only phoned never seen him said I should be doing 1 mg every other day.This makes my pain even worse.

[Karendeena]

Brears, I will just add I had loads of tests including a CT colonoscopy that looks at all abdominal organs and they couldn't find anything significantly wrong with me

[Irishfurbaby]

I would talk to doctor about the weight loss just to put yr mind at rest. It is hard tapering off pres but just listen to yr body. I have come off it completely and use Turmic and yoga and have a remedial massage all the time and sleep with an electric blanket. Hang in there -,there is a light at the end of the tunnel.

[Brears in reply to Irishfurbaby]

Thanks for your response it’s so good to get advise the weight loss has been very rapid since tapering.Im delighted to be a size 12 again not been this size for over 30 years.But again if you don’t look healthy or feel well.The weight loss seems to be in the upper body and face .weird I’m eating not missing meals.I tried turmeric but it gave me indigestion.Im taking CBD oil capsules not sure if they help.Ive been phoning the surgery since it opened no response yet.so will need to walk there

[Irishfurbaby in reply to Brears]

I take Bioglen Turmic Shot it is a liquid. Have been on it for ages and sometimes it gives me reflux. So now I take it and have a small glass of pear juice which has helped. But keep trying yr doctor you need to check out your weight loss. Good luck.

[PMRpro Ambassador in reply to Brears]

I think that probably reflects the places that pred influences fat deposition - that's where the fat went first when I started losing weight after Medrol. Face and upper arms are common fat stores with pred.

[Karendeena in reply to Brears]

Brears, that's exactly where I lost all of my weight, upper body and arms, face