Newbie

[KareokeLover]

Hi, I was only diagnosed on Tuesday and took my first Prednisone on Thursday night. I am getting married in 4 weeks and wondered where I might be by then.. how might I look, feel?

Thanks 🤔

[piglette]

The pred should be making you feel a lot better. My rheumatologist said I would be running round the race track! As I had never done that before I am not sure how true that was as I did not try it. The important thing about PMR is to rest, rest, rest. PMR does not put up with any nonsense. Best wishes for your wedding and remember take it easy.

[KareokeLover in reply to piglette]

Hi and thank you.. I am getting the rest rest rest message.. and am certainly doing that especially whilst I get used to the medication. I do have a hen party coming up… not sure how that will go … thanks for your advice😀

[piglette in reply to KareokeLover]

A hen party sounds fun, have a good time.

[KareokeLover in reply to piglette]

I will thank you 😀

[DorsetLady PMRGCAuk volunteer]

Hi,

Welcome and congratulations -hopefully you’ll feel okay - but don’t attempt to taper before the big day.

Maybe have a look at this -

healthunlocked.com/pmrgcauk...

[KareokeLover in reply to DorsetLady]

Thank you for that and for the link😀

[SnazzyD]

So making massive amounts of assumptions - For photos and outfit - It took longer than 4 weeks for my face to change into the classic steroid shape. You can help that by not eating too much salt and watch carbs very closely. They have a much bigger effect when on Pred. For the run up - If you feel much better be careful of the Pred giving you wings that aren’t real. You need to avoid running around being very busy if you feel driven. Pred can make you feel like a whirling dervish only for you to flop. If you are a person to do everything, resist and delegate. You may find that stress comes in more easily than before; it’s not you, it’s the Pred.

[KareokeLover in reply to SnazzyD]

Hi… I have been on a low carb diet for around 2 years so I am already very careful to eat healthy carbs I am hoping this has put me in a good place. I am only on day 3 of Prednisone so I haven’t felt full of energy yet but I am certainly hearing the message about resting which I am doing. Thank you for your advice I am certainly taking it all on board 😀

[PMRpro Ambassador]

Hi and welcome.

Do tell us a bit more - about you, your journey so far with symptoms and diagnosis and, above all, dose of pred. It helps us to help you.

One of the things that is often said about patients with PMR and starting on pred is how much better they look - the tired, ground down look goes quite quickly and they are able to move more normally, not like the Tin Man. Pred often gives you rosy cheeks into the bargain and people tell you how well you look!!

One thing I will say though is that pred also gives you an appetite!! You shouldn't have much problem in 4 weeks, but many people gain weight and our recommendation is to cut carbs, especially processed carbs, added sugar and limit your fruit intake. If you do that you should avoid both too much weight gain and developing steroid-induced diabetes which many doctors view as inevitable when you are on pred. How much you need to cut the carbs varies from person to personm some just need to cut the processed stuff, others need to be stricter. But avoiding or restricting weight gain is far better than finding you have a load to lose!

I'm sure by the big day you will be feeling a lot better - providing your doctor has started you on a sensible dose of pred.

[KareokeLover]

Hi…thanks for the welcome… I am a retired teacher with 5 gorgeous grandchildren. I met my partner 17 years ago and we decided it was about time we got married plus my granddaughter wants to be a bridesmaid. I only started with symptoms about 6 weeks ago and because it was mainly my legs I thought it was a gym injury. As it spread to my arms shoulders and neck I realised it wasn’t! My doctor has prescribed 15 mg of Prednisone and even after one dose my symptoms were much reduced. I am only a couple of days in so still have some pain.. I feel a bit hot and cold and am waking in the early hours and unable to get back to sleep. When I retired I started a health kick and funnily enough started on a low carb diet and a gym regime so lost lots of weight and was feeling so much better in myself. My sister has been on Prednisone for 15 years so I do have knowledge of the condition but this forum is great to hear other peoples everyday experiences. Thank you 😀

[PMRpro Ambassador in reply to KareokeLover]

Great - if the 15mg is working already you should be able to have a fairly decent day. I found I woke 4-4,30am which is when the inflammatory substances are shed in the body. I could feel them!

Has your sister also got PMR? A longtimer like me if so.

[KareokeLover in reply to PMRpro]

I felt better yesterday than I do today but it is early days. My sister was diagnosed. At 52 and is still on a very low dose 15 years later… she has certainly been on a journey but is still hoping to come off permanently.. what about you? How has it been for you? If you happy to share of course

[PMRpro Ambassador in reply to KareokeLover]

I've shared a lot over the years!! I don't expect to get off pred - for one thing, the PMR has been present all alone and even on Actemra, I still need 7mg pred to prevent bicep tendinitis developing due to other underlying mechanisms for the inflammation. At 6mg, after a couple of week the aches return and make using my hands very uncomfortable - not ideal when you live alone. And at 5mg there are definite adrenal wobbles. My superb rheumy is happy with me on 2-weekly Actemra and 7mg pred where I am stable. I've had the symptoms for over 20 years, been on pred 16+ - I think I live quite well with it really.

Did you try to do things yesterday?

[KareokeLover in reply to PMRpro]

You obviously know yourself very well… I had a very small walk yesterday and pottered a little but nothing strenuous… resting properly today. 😀

[PMRpro Ambassador in reply to KareokeLover]

Thought so - even pottering for too long will knock you out if you aren't careful. Read DL's introductory post AND all the links - especially mine about pacing and fatigue. Managing that is crucial and you need to know by the wedding!!

[KareokeLover in reply to PMRpro]

Thank you… this is invaluable advice 😀

[DorsetLady PMRGCAuk volunteer in reply to KareokeLover]

Ditto to PMRpro’s comments! Read my post whilst you’re resting .., 😌

[KareokeLover in reply to DorsetLady]

I will thank you 😀

[DorsetLady PMRGCAuk volunteer in reply to KareokeLover]

Looks a lot at the start -but it is useful to refer to … 😊

[KareokeLover in reply to DorsetLady]

😀👍

[Lithe]

Congratulations on your upcoming nuptials! I think you've been given very good advice already. As others have said, enjoy your day, don't be fooled by feeling 'normal' and overdoing it on days when the prednisolone makes you feel 'like yourself' - I've learned from making that mistake. I've found PMR to be a winding path that you need to discover and learn from as you go. Enjoy everything in the upcoming weeks and get used to allowing others to pitch in on things you were so used to readily doing yourself!

[KareokeLover in reply to Lithe]

Thank you… I am used to doing a lot so yes it will be a big learning curve… I am taking all this advice on board so thank you 😀

[piglette in reply to KareokeLover]

That was my problem, I never said NO. People used to carry on asking me to do things as normal and I did not know how to refuse.

[KareokeLover in reply to piglette]

That has always been me to… I have had child care for my grandchildren for many years but the youngest is starting school in September so that will give me some time for myself to adjust to life with PMR. I hope you are finding time for yourself as saying no is very difficult

[piglette in reply to KareokeLover]

I have learnt not to do things that are too strenuous, but people still come and ask me questions. It is a hangover from what I used to do, as I was on the Parish Council and was a school governor. I am still the Webmaster for our village website and the Help Line for our Art Gallery, which does not need physical effort, just mental!

[KareokeLover in reply to piglette]

It must be hard when you have always been on hand for others

[piglette in reply to KareokeLover]

I suppose I still answer the phone and reply to emails!!

[KareokeLover]

😀

[sidra1968]

Probably much better! Congrats!

[KareokeLover in reply to sidra1968]

Thank you 😀

[phebamom]

Drink a lot of water. If you drink fizzy drinks, stop. Give them up completely. Drink a lot of water. Keep an eye on sodium intake, keep it under 2000 mg. per day. Prednisone causes water weight gain. Other than that you should be fine.

[KareokeLover in reply to phebamom]

Thank you.. I never drink fizzy drinks but Im also not good at remembering to drink water.. but I will make sure I do now. I have heard coffee isn’t good either but I drink decaffeinated so I need to find out if that is ok… reducing my salt intake to.. all this advice is great.. thanks 😀