Day 3

[Jc554]

Hi guys and gals, back again.

Currently on day three 50mg Pred. I’ve notice that the pain in my temple is almost gone when I wake up but by about 1 or 2pm it’s starts to return. Not bad just the usual tender throb. I take my Pred about 7am.

Not sure how long it takes for symptoms to fully disappear or if they ever do.

Other than that I feel ok, energy levels are better than before and no longer want to doze in the afternoon.

Diet wise I’m determined to not gain wait haha, sticking to 1500ish calories,( fairly low carb apart from porridge) a day and taking the usual vitamin supplements for calcium, omega 3, vit d.

Any thoughts would be helpful.

Still waiting for appointment for biopsy.

I’m also determined to not let this take over. I’ve got 4 x 13 year old quad girls that need daddies focus lol ( yes 4 😂)

Thank you all for being so helpful x

[DorsetLady PMRGCAuk volunteer]

Hi,

from my recollection it took about 2 weeks for all "head issues" to be resolved. So just monitor things, and obviously if you aren't happy then seek advice.

You don't want "this thing" to take over, but you do have to remember you have a serious systemic illness, so you do need to "accommodate" it, and if you try and fight it too hard, it has a tendency to turn round and bite you on the bum!

I'm sure with 4 x 13 year old girls, there must be one or two who would like to play Florence Nightingale - 👩‍⚕️ for a little while anyway! So let them "look after daddy" when needed.

You need to save your energy (not to mention pennies!! for ... 4 weddings (some way off in the future)😂🤣😂. Happy days.

[Jampad]

Love your positive attitude.

[SheffieldJane]

Try not to overthink it too much, these pains dissipate in strange ways. As long as things seem to be moving in the right direction generally, otherwise see your doctor.

[PMRpro Ambassador]

If you find you are getting hungry on 1500 cals a day, do seriously consider using low carb properly. It allows you to eat more satisfying food without the weight gain problem which with pred is almost entirely due to carbs and the changed metabolism. Without carbs you can eat quite a bit more.

[Hellyowl]

Thinking back 3 years, my pain dissipated over the first week, I only took two days off work, on the basis I had been working with full blown symptoms up to the day I was dragged to the GP. So good luck, and beware of being hyper active, I drove everyone nuts on the high doses of Pred, mind you I didn't have 4 teenage girls at home, I just worked with them during the day!!!

[Jc554]

Thank you that’s really helpful

Only real carbs I’m having is porridge with pills in morning as this is great for my stomach. Had issues with ulcers before and can’t take ppis due to reactions. So far so good but early days

[Blearyeyed in reply to Jc554]

You have a great attitude and are taking the right steps in supplements and being as relaxed and positive as you can.

You will need to pace yourself a little more and have plenty of rests between periods of work or fun with your girls to make sure you don't trigger a call back into Pain or Fatigue.

As those girls are 13 they will be more than happy to help pamper and look after Daddy , as long as you still give them lifts!!!

Let them do it , and when the Pain totally dies back don't be tempted to think things are back to Normal again , the Pred is just managing the condition not Curing it so if you over exertion yourself with the ,' old Normal ' the Pain will come back and bite you.

You are living a ,' New Normal ' now and Pacing Yourself is important.

Porridge is fine , and Natural Yoghurt with honey and fruits and nuts is also good to protect your stomach. Keeping low processed / high G.I carb , low processed sugar but not going to mad if you are not already having weight issues . 1500 calories sounds too low , 2000 / 2200 is better for a Man with moderate activity you need to feed your body to cope with recovery and taking medications. Good nutrients and good hydration is vital really a healthy Mediterranean Diet works well.

Good luck and keep dropping in if you need us.

[PMRpro Ambassador in reply to Blearyeyed]

Though yoghurt with honey, fruit and nuts wouldn't be ideal if you want to keep carbs low

[Blearyeyed in reply to PMRpro]

Not too much fruit , but that's what I mean by going Lower Carb but not going to strict . My Pred and second breakfasts with my medications are the most important meals of the day so I'm happy to use up more carbs for the nutrition and energy benefits then eating meals with more proteins , vegetables etc. during the day .

I will eat a small , just ripe banana each day too , because I want the easy nutrients especially potassium I can get from it.

I don't keep to the stricter Carb Count of the Low carb / High Fat Diet but continue with less carb but with a low Glycaemic index as that has worked well for me for years.

[PMRpro Ambassador in reply to Blearyeyed]

Mmm yes - but that would be my entire carb count for a day. Nothing left for veggies...

[Blearyeyed in reply to PMRpro]

I know , it's hard on some diets , it's the on going good debate , we all have to go with what works for our lovely uniqueness with healthy guidelines really don't we .

How little is your Carb Count?

[PMRpro Ambassador in reply to Blearyeyed]

If I want to lose weight then under 20g. Not a lot

[Blearyeyed in reply to PMRpro]

Gosh !

[tangocharlie in reply to PMRpro]

Same here, I have less than 20g carbs if possible but max 50g. I'm trying to do keto but keep slipping, but at least I'm doing low carbs. With such low carbs you're talking just vegetables that grow above the ground really.

[PMRpro Ambassador in reply to tangocharlie]

Exactly!

Probably blew all mine on a pancake tonight - electric off again but it waited until I'd cooked tea! What can I make in a pan - then I can use the camping stove if need be

[Constance13 in reply to PMRpro]

Veg soup/stew. Salmon (with salad),

Knödel with gravy & red cabbage. Could go on for hours I suppose!

[Jc554]

Thank you all very helpful.

Yes breakfast is the only real carb meal and I have bought gluten free porridge again to reduce inflammation. I snack on carrots etc. If I feel I need to eat more I do but 1500-1700 calories seems ok at the minute. I’m a bit over weight as it is so if I can drop a few lbs in the process the happy days as it’s less pressure on my organs etc. Think it’s all about finding my feet and reacting when I need to.

Onwards and upwards x