Weight loss as a symptom of PMR ?

[carport]

Has anyone on the forum experienced weight loss before/after being diagnosed with PMR? when I first developed signs of PMR pain and stiffness I also lost a couple of pounds. When I started on steroids next day no pain or stiffness but soon suffered from insomnia, swollen hands, buzzing mind , mood swings and muscles started to weaken over a couple of weeks BUT in 3 weeks lost 8 pounds. My GP told me I should be eating like a horse and putting on weight. The times I was having blood tests the nurse agreed to weigh me and informed the GP of weight loss. I was then put on a low dose of propronalol and slowly put the weight back on. Fast forward to January when GP had tapered steroids 3 weeks 7mg, 3 weeks 6mg and to then start 5mg by txt. I soon started to feel unwell upped myself to 5.5mg but had started to loose weight again lost 6 lbs in less than 3 weeks and still felt unwell eventually managed to speak to a Doctor who decided to ask for a Rheumatology advise. My own GP did not think adrenal insufficiency but anxiety but by then had been referred to Rheumatologist. So I have seen him and he listened, running a load more blood tests, CT scan and EMG. Much slower taping 7mg 4weeks, 6.5mg 4 weeks and then 6 mg 4 weeks during which I will see him again. He did mention adrenal insufficiency in his letter to GP and recommended a weight diary. In 5 weeks I have put on 2 pounds.

My thoughts are is it possible to only have weight loss as a symptom of PMR while on steroids as no pain or stiffness but muscles do feel weak and no longer able to do the waking I used to as muscles not up to it, can also feel tired with less energy than before PMR?

Thank you for reading and sorry it is such a long post hope it makes sense as these days my brain power is not what it used to be.

Angela

[PMRpro Ambassador]

"My GP told me I should be eating like a horse and putting on weight"

By no means everyone does - we have several people on the forum who LOSE weight on pred. And it can happen in PMR but not usually after starting pred if they are on enough because there is less or no inflammation to cause the increased metabolism that makes you lose weight.

The fatigue and reduced energy are features of autoimmune disease - and sometimes you notice them less before starting pred as it is early in the disease. But pred can cause that too,

[carport in reply to PMRpro]

Thank you for the quick response though only just reading as husband suffers from complex PTSD and does not like it too much if I spend what he sees as a long time on the computer

[PMRpro Ambassador in reply to carport]

No problem - we don't expect instant replis - often we don't really expect replies

[piglette]

I lost quite a lot of weight before PMR I really could not eat. Unusual for me. I then lost 23kg over the year between seeing the rheumatologist. The rheumatologist wrote to my GP about it but probably my GP did not read the letter. I have put on some weight since then though.

[carport in reply to piglette]

My word that was a big weight loss hope it did not cause you any problems

[piglette in reply to carport]

A lot of people commented and I would pass a window and see my profile and it used to give me quite a shock. I do seem to have got back to a comfy weight now. I had very high inflammation markers at the time both CRP and ESR over 100.

[Lauterbach]

Hi Carport, "have you had unintended weight loss" was one of the 3 questions my Doc asked me when I went to him with "muscle pain". When I answered yes to all three (did it come on overnight was the 2nd and can't remember the third) he said "I know what that is" and the next thing I knew I was on 20 or 25mg of pred/day and blissfully pain free. Since then my weight has been pretty stable. So the Pred hasn't affected it much.

[carport in reply to Lauterbach]

Thank you for response never been asked if unintended weight loss but believe me it was especially this last time as my trousers no longer fit me but a good excuse to buy some new clothes !!

[Seacat30]

Hard to reply about my time pre diagnosis. I was on a diet so I lost weight. It was a good thing. I was not so keen when the weight loss got faster when I was put on Prednisolone, Lansoprazole and Adcal and tried eating low carb. Without going into details my digestion was being destroyed. I gave up Adcal, took vitamin D and increased the calcium on my diet. 10 weeks later I started weaning myself off the PPI. I reintroduced some carbs. I have got my weight back up again although my digestion still isn't as good as it was.

[carport in reply to Seacat30]

Thank you for the response I to have taken myself off of PPI to as started to feel nauseous though GP told me to take at night. To be honest I would rather take as little medication as possible.

[grannyouch]

Hi. Interestingly I’ve not come across weight loss in anyone else but you and me! I lost about half a stove in the months leading to a diagnosis but even before starting Pred starting putting it all on again. I wish I knew why so I could advise you but it’s rather mysterious.

[Jackoh]

Yes I lost a lot of weight before being diagnosed with PMR. After a few months on pred I started to regain that weight. 💐

[Daffodilia]

I lost a stone at start of PMR but put back when taking pred

[Manihiki]

I lost ten kilos both before, and immediately after being diagnosed with GCA and continued losing more on prednisone. I stabilised but have never put it back on

[Chewy21]

I have lost over a stone since diagnosis. I have struggled with trying to gain weight for years and finally gained about a stone and half about three years ago only to lose it all again when I started steroids.

[carport in reply to Chewy21]

It is so weird how some of us react to the medication

[keeptalking]

I certainly lost weight (at least half a stone) before being diagnosed. Was fed up with people telling me I wasn’t eating enough. Though I’ve had to put up with that most of my life. I was eating well but have always been someone who has difficulty putting weight on. So early days of Pred. didn’t bloat me much.

However now 4years down the road have about a stone more than I’ve ever had in my life. So good news for me 😃😃.

[carport in reply to keeptalking]

It will be interesting to see how I progress over time

[Joan-E-D]

I lost about a stone before I was diagnosed. Then I put on that much whilst taking Pred. When I went into remission after 3 years I lost all the weight I'd gained on Pred. and now a couple of years later I've gained a couple of pounds but I'm well below what I was on pred.

[Wales20]

I have lost about 10% of my body weight since being diagnosed with PMR nearly three years ago, and I was not overweight. My GP thinks this is because having inflammation uses up a lot of energy, and I have noticed that when my inflammation is higher it is harder to maintain my weight.

[carport in reply to Wales20]

Similar to me though I am just dipping into being under wight as BMI just under 19

[Sharitone]

I lost 6lb each time leading up to PMR and GCA diagnoses. Most of it came zooming back on with the high steroid dose for GCA, but lost some again as pred reduced. I'm happy about that, but not the loss of energy: I can hardly walk any distance at all and have to go to bed in the afternoons. So you're reasonably normal! (😆)

[carport in reply to Sharitone]

Wouldn't it be good not to be "normal" for PMR/GCA but full of energy and perfect weight

[Bcol in reply to carport]

Hi Carport, just to provide a different perspective, I think I'm a real oddity here, since being diagnosed and starting Pred I have had no real change in weight, fluctuates a kg up and/or down but nothing more, have never had a burning desire to eat more and no real change to my diet.

[Mmjj]

I lost 2 stone before diagnose, have gained 1 stone back which I’m more than happy with, 6months on steroids that’s a win 🤣😂

[autumnlass]

I lost a 1/2 stone after being diagnosed with PMR …. & then intentionally I went on Low Carb Vegetarian Diet (Rose Elliot) and lost another 20 lbs .. but now put back on 7 lbs. I find weight fluctuates with me a lot. I wish I hated carbs! 😕😉

[pegpowell]

I lost over 20 lbs before diagnosis. Regained about 5 lbs after pred treatment and 6 years later still at the same weight and on 3 mgs pred.

[Ana-16]

A somewhat belated answer but I lost so much weight pre diagnosis of PMR that my GP sent me for urgent cancer screening. I’ve now put that weight back on and a bit more than I would have liked!!