New to pmr advice please

[Sueloobyloo]

I was diagnosed with pmr in May this year and was put on 15mg pred which helped enormously, but then I was putting a lot of weight on because of eating stuff that I don’t normally eat, so I was tapered off and down to 10mg pred, only for the pmr to return. I have been on 15mg for over a week now but I still feel tenderness throughout my body on different parts on different days and I am still also fatigued, I haven’t been out all week as I feel unwell and tired, can anyone help and give me advice please.

[PMRpro Ambassador]

Cut your carbs drastically, especially processed carbs and added sugar, and limit your fruit and underground veg intake. This site is a simple and clear introduction to low carb eating:

dietdoctor.com/low-carb/foods

By doing this most people can avoid weight gain and even lose weight on pred.

How much you need to limit carbs varies from person to person. some of us need to get very low to lose weight but can maintain weight fairly easily. By cutting carbs you reduce the swings of blood sugar level that happen on pred - it is when they plummet in response to insulin secretion that you crave the food you wouldn't normally eat to return the BS level to normal and that just continues the roller-coaster.

Cutting the pred is only one answer - and in the case of PMR a pointless one since you can only reduce the pred dose when the disease activity allows - otherwise the symptoms return.

[123-go]

Hello Sueloobyloo. I'm so sorry to say that predictions made in replies to your earlier posts have been proven and your PMR symptoms have returned. If your weight is causing you problems that should be dealt with separately from PMR even though the weight gain may well be linked. To deprive you of essential medication to manage the inflammation in your body by telling you to reduce in this way is, in my opinion, unprofessional and neglecting your autoimmune condition. It's like removing the plaster cast on a broken ankle before the break is healed! I'm pretty sure that your GP does not understand PMR and it's treatment.There is no doubt that you will need to return to a higher dose of Pred - others will advise on that.

Your doctor should be helping and supporting you more in your attempts to lose weight. I see you've had good advice on reducing carbs, etc, and without intending to appear unkind you have to summon up the willpower to change your eating habits. I'm wondering if your GP will refer you to a dietician?? Diet sheets and online programmes have their place but I do feel that a real, live qualified person will be better to guide and support you. This is my own personal opinion and you don't have to agree 😏. I hope, though, that it's given you something to consider.

I do wish you well. Please keep coming back here whenever you feel the need and/or have questions.

[Koalajane in reply to 123-go]

I went low carb quite easily 5 years ago and still stick to it. I did it on my own and learnt to read the labels on the back of products. I also bought a book carbs and cals pocket counter. It is my way of life now and I lost over 3 stones in weight

[123-go in reply to Koalajane]

Good for you: you've done very well.🙂

[Theziggy in reply to Koalajane]

you can get a carbs and cal app for your phone

[PMRpro Ambassador in reply to 123-go]

Trouble is, the NHS is stuck in the calories in and calories out maze - some diabetes nurses are still to accept carb reduction for their patients.

[123-go in reply to PMRpro]

Ridiculous when it's proved to work.

[PMRpro Ambassador in reply to 123-go]

I never understood the logic of telling patients they MUST eat carbs and handing out medication to combat it!

[123-go in reply to PMRpro]

"Ours is not to reason why..."It's a good thing that we do!

[DorsetLady PMRGCAuk volunteer]

Not sure if I linked this to you before -but even if I did maybe have another look through..particularly at the pacing advice which is included as another link.

Others have given advice on diet, but you may find that second time around 15mg is not quite enough so give it another week and if no better speak to doctor.

Unfortunately once you’ve flared, it very often seems more difficult to get symptoms back under control

healthunlocked.com/pmrgcauk...

[piglette]

PMR is life changing, you have an illness and by taking steroids the illness does not go away, the steroids just relieve the pain. PMR expects to be respected and will not let you get away with not looking after yourself. Fatigue is part of auto immune diseases. Start to pamper yourself, lie back and relax.

[Susan1705]

Hi, when first diagnosed with PMR and high steroids did put in weight, though as soon as I got below 10mg weight then went very easily with any drastic change to the way I eat.

[OutdoorsyGal]

Now that you know prednisone messes with your appetite, you can counter that side-effect of controlling your PMR pain.

Smaller portions, no second helpings, no between meal snacking.

My weak spot was mid-afternoon to dinner time. My solution was herb tea. It was winter, so I took it hot and it warmed me as well as filling me. But in summer, you could go with iced tea.

The berry flavors are sweet without sugar, and satisfied my sweet tooth, giving me the willpower to ignore the candy stash hidden in the back of a kitchen cupboard.

I did gain a couple pounds, but they fell off as the tapering progressed. (Mostly my cheeks were fuller - and rosier - and I felt prettier with fewer wrinkles and less sallow coloring!)

Good luck, be strong.