weight loss

[rustyrussell]

ive been on 15mg pred almost 4 weeks and seem to be losing weight is this normal with PMR while taking pred

[SnazzyD]

Hello, you could at first, check to see if you are losing muscle bulk which can happen due to Pred’s effect on the muscle and reduction in physical activity. Is your appetite the same as before diagnosis and have you changed your diet lately? However, unintentional weight loss ought to be checked out and keep a record of your weight too. How are you generally?

[rustyrussell in reply to SnazzyD]

I look the same and still at work so keeping active but of course no where near what I could do and diet is the same

[SnazzyD in reply to rustyrussell]

So best to see a doc as no obvious reason. Record your weights if you haven’t already done so. Did your weight go up before diagnosis too?

[rustyrussell in reply to SnazzyD]

MY weight was down to 13.5 lots of walking during Covid from 13.12 went back up to 13.7 before I was on pres so not drastic but I've done nothing to lose it either

[SnazzyD in reply to rustyrussell]

So all hovering around 7lb with explained loss initially.

[MrsNails]

Hi Rusty

As Snazzy says you need to inform your Doctor of any unexplained weight loss, is it a significant amount or just a pound or two? Are you overdoing it as you are feeling better?

MrsN

[rustyrussell in reply to MrsNails]

it's not touch wood drastic but about 3 pounds in 4 weeks

[MrsNails in reply to rustyrussell]

OK that’s not a lot but keep a note of your weight, Pred Dose, how you feel & definitely mention to your GP at your next review....

Can l ask, Male or Female?

[rustyrussell in reply to MrsNails]

I'm 54 male always been active and could walk 20miles so reasonable fit .came out the blue overnight like many on here and im 13st 4 as we speak

[MrsNails in reply to rustyrussell]

Thanks Rusty, pop that information in your profile, it’s very useful for us to know, there’s more ladies than guys on here so we can tailor our advice accordingly.

One things springs to mind is you may have lost this weight before you started on the Pred as being unwell can make you lose weight, l never realised how thin & gaunt l’d become until l saw photos later on.

Keep an eye & mention to GP

Good Luck 🍀

Best Wishes

MrsN

[rustyrussell in reply to MrsNails]

yes i will fill it all out later and thank you for the advice .I'm starting to find out people do not understand this illness and it's so hard to try and explain to them so when I found this forum I thought thank God someone knows how you feel

[MrsNails in reply to rustyrussell]

That’s for sure, there are a few guys around on the forum & the good news is generally guys recover in a shorter time than us girls 😉

[Hidden]

I am a 65 year old man, very fit and recently diagnosed with GCA.

My weight dropped initially, which I have attributed to muscle wastage; as stated by others, a common occurrence, as is reduced appetite initially. I lost more weight initially than you are experiencing, however, my dose of steroids at 120mg was significantly higher and I am 6kg heavier.

My weight has now stabilised some 3kg lighter. Certainly from a body shape point of view, I have lost muscle mass noticeably on my glut max and I have a redistribution of fat on on my abs, which wasn’t there before.

I use MyFitnessPal to record my food intake and weight. The app is very good if you feel you need it, particularly to make sure that you record your food to prevent youeating too much: increased appetite being quite common after your body becomes accustomed to the drug. I can also chart my weight. As a final point, the app links to other fitness apps etc and therefore you don’t have to spend time putting in additional data eg. Fit bit, myZone, Nokia etc etc etc.

Be prepared for weight changes, however your weight loss seems similar to mine and unless it continues or suddenly accelerates, I would suggest that this is quite normal and you have nothing at all to worry about😀

[Bcol]

Hi Rusty, 71 year old male, started on 30mg at end of June and slowly making my way downwards. I have my own modified DL taper spreadsheet which I use to monitor a: Pred keeps running totals etc, b: weight, tend to take weekly and also c: Blood sugar levels again just a simple check each week. Not had a real problem with weight looking to keep around 70 kg- 72kg and at the moment clocking in around 69kg - 71kg. I've also got a Fitbit which keeps an eye on heart rate and exercise. Like others I have found my resting heart rate has increased. Used to be around 55bpi it's now around 68 bpi. Managing to walk the bowwows again but not the long, long walks they had before and try and choose fairly flat terrain. The forum is brilliant with many highly knowledgeable and professional people who will be more than willing to help with any questions you have. Peter

[Hidden in reply to Bcol]

Ditto re heart rate. Resting used to be 50-55. Now having just woken 69. Walking for 1 mile last night, 99.

[Bcol in reply to Hidden]

According to Fitbit mine made it to 135 during my morning walk yesterday, has quite high peaks during the day as well, guess it could be when I go upstairs, not doing anything else that could be described as exercise. My general cardio fitness is described as excellent for my age. Love it when they put that bit on the end, for your age!!!!

[Hidden in reply to Bcol]

I have bored at international level regarding exercise here. I think that what is often missed is how powerful prednisilone is and the effects it has on us individually. As I can’t get into the surgery for an annual BP review, I am taking it at home ahead of a telephone consultation. It’s not just pulse, with me it is BP. Much lower at rest, however, it take far far longer to return, even after moderate exertion e.g. walking up the stairs - 20 mins.

Take it easy is my advice. Watch your diet, especially Refined carbs Such as bread, lots of gentle short walks. Learn to live with it.

[Bcol in reply to Hidden]

Like you I do BP at home and it is absolutely fine. Not actually seen a doctor since I started this journey!!!!

[Hidden in reply to Bcol]

Sorry to hear that. You will see many mixed reviews on here regarding medics. Many critical. I can only say that a reluctance to see me almost lost me my sight. Thankfully a friend intervened and my service up until yesterday has been excellent.

As you haven’t been seen by anyone, my advice to you is that you sense that you need urgent care. Seek it and front up at A&E. I am doing something similar today, my consultant after being 90% certain that I have GCA is now not sure I have the disease and has asked for me to arrange for bloods to determine my current inflammatory markers. I can’t get an appointment until next week. He also wants to do a PET scan, but the results may not be accurate due to the steroids dosage I am taking - no alternative offered.

No response from my GP to me sharing with her the exchange I have had with the rheumatologist and therefore I am going to chase up the rheumatologist as to why I have still not had the MRI which was requested 4 weeks ago.

If you are unsure, grasp the nettle, as having worked in the NHS, I believe it is an outstanding service when you access the right service. If you don’t you float about in limbo and can easily be overlooked. The Impact of Covid to many has illustrated that the friendly and family orientated service which GP’s have portrayed for years, whilst evident from some, is being bought into question by many. There is an urgent need for change to address the service, particularly in terms of access, which was bad before and is now even worse. The strange thing is, pre COVID, many of us who worked in primary care were driving telephone consultations etc as a convenient way to consult those who worked, particularly commuters. The resistance from the professions was huge. Strange how things have changed.

Sorry to rant, one of the issues with high dose steroids is that that make you manic and once I start I can’t stop!

[Bcol in reply to Hidden]

Hey, no problem with ranting, its one of the reasons the forum works, its gives people a chance to get things out of their system and get some helpful replies and information. I'm not fussed about urgent appointments at the moment. I don't have GCA, at least not at the moment, and the Pred is doing a good job with the PMR. I have had regular blood tests at docs ( with nurse) and spoken to doc on phone twice. My own home monitoring is also not showing any signs that I should be worried about at this time. He seems happy to leave tapering and dosage to me at the moment and, so far, has given me everything I have asked for regarding prescriptions.

I will talk to him about, though about whether I should be on Adcal and other other Vit. supplements though which I am not at the moment. All in all as happy as can be expected!!!!!!!!

[PMRpro Ambassador in reply to Hidden]

I really do have to say that a PET-CT on the sort of pred dose you are on is a total waste of time and (a lot) of money if they expect it to show inflammation! One study found that even 10mg suppressed the emissions enough to invalidate the results.

[Hidden in reply to PMRpro]

Exactly. He wishes to determine the inflammatory markers again, but as always in these troubled times, trying to get a phlebotomy appointment is not easy. I would quite happily take it myself would they give me the vacutainers et al.

[PMRpro Ambassador in reply to Hidden]

I called the GP on Monday as my anticoagulation approval needs to be renewed, that requires a creatinine level. Called the phlebotomy dept Wednesday morning, appointment at 9.30 this morning. I had had a rheumy appointment cancelled in April, asked what was happening about catching up - have an appointment for 11am tomorrow. Our hospital is almost back to normal although with different procedures.

[Hidden in reply to PMRpro]

Sadly, ours is all at GP - which usually is far better, locally based, no parking charges etc etc. As trying to enter a GP surgery in the U.K. is more difficult at the moment than entering the vaults of the Bank of England and almost as difficult as trying to set up a hot dog stall at the Vatican inside St Peters, it has become more of a challenge.

[PMRpro Ambassador in reply to Hidden]

Our hospital is probably closer than most GP practices in the UK and people who live further away have a service at the health centre staffed by nurses. Normally I could get the train to the back door of the hospital - which happens to be about 20m from the phlebotomy clinic. Train still running but its a longer walk round to the main entrance!

[PMRpro Ambassador]

Weight loss with PMR is not unusual though more common in GCA. But once the inflamamtion is under control it usually stops. A few people lose weight on pred - it really does happen!

[123-go in reply to PMRpro]

There's hope for me yet! Pred belly is not a good look.

[PMRpro Ambassador in reply to 123-go]

When I switched to a low carb diet the first place the fat went was from around my middle. I'm still overweight - need to try harder - but I have a waist!

[123-go in reply to PMRpro]

You are inspirational! I WILL try harder. 😇