Losing weight whilst tapering

[Karendeena]

Not sure if I have mentioned this before on a previous post but has anyone else lost weight and muscle tone whilst tapering?

I first went on prednisolone in May 2021 at 15mg per day. I started experiencing mood swings and irritability around September of the same year. I also piled on around a stone in weight.

My GP tapered me too quickly (according to my rheumatologist)at 1mg every 2 weeks, I felt dreadful. Stayed off pred for a couple of months but inflammation crept back up and was put on 5mg with a slow taper of 1mg every 6 weeks. I am down to 2mg but have lost more weight than I put on! I have had loads of tests and all coming back in normal range but the weight loss continues to worry me along with the fact I seem to have lost muscle in my arms. My GP thinks my body is still trying to adjust and also my mental health (stress through the roof)is the culprit. Would like to hear if others have experienced this as I am unsure if it's side effects. Thanks, Karen

[PMRpro Ambassador]

It could well be due to the low dose of pred and your body unable to produce enough cortisol to replace it even at the slow taper you are doing so that you are suffering adrenal insufficiency - especially with the stress, You may need a bit more pred just because of that.

[Karendeena in reply to PMRpro]

Thanks PMRpro, always appreciate you experience. I am seeing the GP (one I really respect) next week so I am going to ask him. What was that test again you recommended please? One that GPs can order, thanks

[PMRpro Ambassador in reply to Karendeena]

Basal cortisol - the cortisol level in the morning, 9am plus or minus an hour or so.

[Karendeena in reply to PMRpro]

PMRpro, when I say stress through the roof, it's an understatement! I am trying to look after a mum who lives with me and has onset vascular dementia we think so her behaviour and aggression has given me carers crisis!

[PMRpro Ambassador in reply to Karendeena]

Then you almost certainly need more pred simply for that. I needed more pred as a carer to cope physically and I was on well above what you are.

[Karendeena in reply to PMRpro]

Thanks again for you advice

[SheffieldJane]

It is so difficult to get better with so many demands that being a carer makes on you. Are you able to have respite by having a relationship with a suitable local care home? I remember a number of people’s parents having a little break in my mum’s eventual forever home. It seemed to refresh the carer and get the parent used to a new caring environment, I was happy with the home, they were kind and caring. If this is your eventual decision then your mum will be familiar with it. It is hard but when I finally faced it the relief was huge. I still went everyday and the staff were my friends. My mum lived on for another 7 years much to everybody’s astonishment. Especially my sister who lived in France.

[AyJayBass in reply to SheffieldJane]

I highly recommend respite care in a local care home. My wife had Alzheimer's and as she deteriorated I was providing 24x7 care. An occasional week's respite was a lifesaver. In the 12 months before she moved into care permanently she went in for respite one week per month together with 9am-5pm one day a week. This helped to familiarise her with the home and the staff with her.

[Karendeena in reply to AyJayBass]

Trouble is she just won't go! Think I have managed to get her to accept a carer coming in so I can go away for a week. Trouble is I always come back to worse situations

[Hidden]

Losing weight on pred! I wish. But the muscle loss is an issue for me. I'm 75yo n was doing fine with that until PMR n pred hit me. Now I can't lift anywhere near what I used to. It really irritates me.

[Wales20]

I have struggled with losing weight with PMR over the last three years. My rheumatologist thinks this is because inflammation uses up a lot of energy, so I eat three decent meals each day, which seems to help. How are your inflammatory levels? I am currently down to 3 mg of Prednisolone. I also suffered with muscle wastage but have built this up using a daily exercise programme in consultation with my physio and daily walks. I have found my daily exercise routine helps reduce my stress/anxiety and gives me a sense that there is something I can do to help myself. I hope this is useful.

[Sharitone]

I have gone up and down, and ended up with a net loss of about 1/2 stone. Went up quickly with high dose of pred, and has come down as the pred dose reduced, partly muscle loss, I think, and partly keeping the carbs in check. Lost a couple of pounds last month with what appeared to be adrenal insufficiency - that might be the same for you.

[Raven1955]

Almost 6 years ago my onset of PMR coincided with an extremely stressful period of time and I have no doubt that it was a major contributor to coming down with PMR. Likewise, I lost weight for the next 6-8 months, dropping from 230 pounds to 175. I'm sure that the stress caused the weight loss for me as I didn't much care when or if I ate. I can't say that there was any point in the 6 years of PMR that gave me problems with overeating.

I still work a full time job that used to be much more physical but over the 6 years my muscle mass and tone have gradually reduced in spite of my best efforts. Needless to say, I've had to shift to doing work that doesn't require the physical aspects previously required. Frustrating but certainly a side effect of PMR, stress and prednisone I would say. I was fortunate that I could afford to lose the weight and it has been a positive in many other health areas. But at age 67 it's tough to gain back muscle lost and I've had to rely on others for chores that I used to have no trouble doing myself. Currently at 2 mg of prednisone and holding, as the adrenal glands are being sluggish. Best wishes to you.

[Karendeena in reply to Raven1955]

Hey Raven1955 your story is almost like mine. Yes, I have been under immense stress and pressure and likewise my eating habits have changed. I simply don't eat like I used to. I don't seem to have the appetite. I think all the stress and the tapering has caused my problems and again, I think my adrenals are a bit sluggish.....wish they would wake up, I just want to feel normal!

[Raven1955 in reply to Karendeena]

I have my times of frustration as well but I remind myself of how things were at the start of PMR. I was frightened, not knowing the name of the demon that had taken over my body, making the task of getting out of bed and dressing so painful that I didn't want to face the day. I too want better times but I'm thankful to have gained a big part of my life back. I try not to dwell on how I "used to be" - it's counterproductive and pointless.

I agree regarding appetite. It's almost like the wiring that causes me to want to eat vanished. My stomach can be growling and I realize it's almost evening and I haven't eaten breakfast or lunch. I eat because I know I should - not because I'm hungry. Crazy.

[winfong]

I've lost a lot of weight (2 stone) after going on a very low carb, no sugar diet in response to a diabetes scare. Definitely some muscle wastage with that. I'm trying to reduce pred (very slowly) and am down to 7 mg. Hard to tell what's the diet, what's pred, and what's the PMR/GCA/LVV.

[PMRpro Ambassador in reply to winfong]

If you are losing muscle with low carb then you need to up your protein intake.