Help?

[Curlytot2008]

hey. I'm only 27 and I have just been diagnosed with pmr. First lot of steriods taken today and i still feel awful. All steamed from a shoulder injury. I'm so exhausted from no sleep at all due to being in pain and tips or tricks to help that I may not have thought of?.

[MrsNails]

Hi Curlytot

Your’re pretty young, that’s for sure! Are you Male or Female, have you had any blood tests & what dose of Pred have you been started on?

Mine started from my shoulder, so much sympathy.

Kind Regards & Welcome

MrsN

[Curlytot2008 in reply to MrsNails]

I'm female. And I had blood tests that highlighted high markers for inflamation. I cant tell u much more than that because its a bit of a blur. And ive been told to take pred 4x daily at 5mg.

My shoulder injury happened in October. And ive been going back and forth for diff pain relief from it. And nothing worked then my hips and knees and legs started to hurt.

As u can imagine its not the best news I thought id get and as its still sinking in just a bit overwhelmed.

Thank you for quick response so appreciated x

[MrsNails in reply to Curlytot2008]

Yes, it will be a huge shock to you, l’m sure! First piece of advice l can give you is to take it easy now & let the Pred mop up the Inflammation. You will feel so much better in a day or two or even tomorrow but don’t let that fool you. Has your Doctor advised you when to take the Pred as most of us take it in one dose in a morning, mainly to try to mimic the way Cortisol works in our bodies.

Are you working? We will ask you lots of questions so as to assist you as much as we can.

MrsN

We tend to call it Pred as here in the U.K. we take Prednisolone & in the USA they take Prednisone but don’t worry about that.

[Curlytot2008 in reply to MrsNails]

They just advised to take it as I stated before but no time limit. I took mine at lunch time cos I just wanted to get the first lot in my system. But im open to suggestions of course. I tend to not sleep at all atm with pain and not being able to get comfortable. I've propped myself up with pillows different ways and nothing seems to work. And in a cool room cos these hot n cold fushes are just crazy. I was working but after the doc called me they advised that I sign myself off sick for a week and that i also shield. Which again isn't something I'm taking lightly im a bit of a work a holic and as u can imagine feel like im lost right now.

And no problem im open to any advice I can get. Xxx

[MrsNails in reply to Curlytot2008]

I’m glad they’ve suggested you take some time off sick, that’s where l believe l went wrong & carried on despite how ill l became.

The general recommendation is before 9am but generally people take it when they wake up, l take mine around 7am with some plain yogurt to protect my stomach (l’m on a lot of Meds)

You are talking to Pillow Lady! I’ve had every conceivable pillow known to man & woman!

You’ll get lots of replies & advice, everyone is great & happy to help, we’ll all be Mothering You!

Take it Easy

MrsN 🌺

Tomorrow we’ll give you some tips on your diet to help avoid some of the side effects of Prednisolone.

[Curlytot2008 in reply to MrsNails]

Yeah i kinda knew it was coming as id been deteriorating but think more of a battle with the mind for me on that one.

I probably will do the same in the morning. Just hoping they work as nothing else has so far. I've been given lanzaprozine? To protect my tummy too.

I feel like the michelin man at night with all my pillows lol. N i still cant get comfortable seems to be my hardest challenge. I just seem to fidget loads is this normal? Xx

Obviously different things ive read about in general does this mean that this will be here for life now? Cos I've read so many different things on how long it lasts or can last ect. Just wondered the general length of time people have suffered?.

Thank you so much in advance for the help and support xx

[MrsNails in reply to Curlytot2008]

Don’t think about the long term, it’s far too soon, take one day at a time.

I take Lansoparsole too to protect my stomach, l just add the yogurt in as an extra & some people only take that.

You may find by tomorrow night you will be more comfortable than you’ve been in a while so that may help.

I’m off to make Dinner (Low Carb) now but will check in with you tomorrow.

Sleep Well

MrsN 🌺

[Arflane97G]

What helped for me in the early days / nights was trying not to worry too much about sleep, I was lying down so at least I was resting and could retire to bed at any point during the day. Do you live Alone / with someone? Also helped not to worry about doing anything other than getting through the day, if I felt I could manage a shower I had one, if I felt I could not manage it I didn’t. ThAt was this time last year and the difference a year has made has been amazing, I guess you just don’t notice the gradual improvements although I first time I walked unaided to the local shops was a milestone. I guess my message is - just rest, let the Pred work it’s magic and heal. Very best wishes

[Curlytot2008 in reply to Arflane97G]

Thank you for the responce.

And luckily I do not live alone so I have that help. Thankfully. And I see I just feel very lazy not doing anything I am used to being so active and rushing about. Thank you xx

[Constance13]

Hello Curlytot, pleased to meet you.

Sooo sorry to hear you have PMR - you're the youngest I've every heard of with this disease. Usually you will feel the relief with the Prednisolone within a few hours to a couple of days.

Mrs Nails is one of our advisers and the other specialists will be along shortly to start you on your way/give you advice.

There is always someone on the forum - day and night - as we have many sufferers throughout the world.

All the best, and good luck.💐🍀🍀

[CT-5012]

Welcome, just a thought if you take your pred all at the same time with breakfast it will probably help with your sleep problems as the big buzz will be all used up. All good wishes.

[PMRpro Ambassador]

Hi and welcome!

My first question has to be whether everything else it might be has been eliminated? The symptoms we call PMR can be due to a range of other conditions and several would also cause raised blood markers, They are not specific to PMR. It is extremely unusual for someone as young as you to be diagnosed with "just" PMR - I'm not saying it isn't though, there is a paper about a 24 year old! But doctors, especially specialists, are very unwilling to label it PMR in someone so young.

The second thing is that you should take your pred altogether as a single dose in the early morning - it is far more effective for the majority of patients and should reduce some of the adverse effects. Some patients may find it helps to split the dose - but even then it is more like 2/3 of the total dose in the morning and the rest later in the day, the optimum time varies from person to person. Even so, it may take a week or so to get a good result. I took 15mg as soon as I picked it up from the pharmacy - and got relief in under 6 hours but that doesn't always happen!

[Tawnyowl1]

Hi and welcome, it took abit longer for me to feel the full benefits of Pred about a week. I wish I had found this forum sooner as there is always someone asking questions which help us all by the knowledgeable replies. The hardest thing is to slow down, which I for one am not very good at!! I hope you get the relief from the pain soon. Xx

[Kendrew]

I'm an ex nurse and had PMR myself for almost 2years. PMR affects on average people in their 70's and can be diagnosed in people who are 50+ . Very occasionally people slightly younger than that may be diagnosed too. At your age it's most definitely not likely to be PMR. I honestly think you need to question the diagnosis and ask on what firm basis that conclusion has been reached. There are many other conditions you're far more likely to be suffering from......rheumatoid arthritis, lupus, lyme disease, to mention but a few.

[PMRpro Ambassador in reply to Kendrew]

thefreelibrary.com/A+24-yea...

Never say never - though I will grant you it is VERY unusual and there are a lot of things it is more likely to be!

[Bibliomaniac in reply to PMRpro]

If the Pred eliminates the worst of the pain in 48 hours or so, then it probably is PMR, but if that doesn’t happen your doc may need to do other tests. Taking 15 mg of Pred seems to be how they confirm the diagnosis ( together with bloods)

[PMRpro Ambassador in reply to Bibliomaniac]

A speedy response to 15mg pred adds to the clinical diagnosis but it is not confirmatory - just another brick in the wall. For many 15mg is not enough - it had become an urban myth but most of the top experts are wary of being so dogmatic.

[MrsNails]

Morning Curlytot

How are you feeling this morning? I really hope you slept well or at least better than normal.

1. Re Diet to help prevent weight gain/moon face try to keep on a low carb diet & reduce bread, pasta, rice, potato’s and any extra added sugar.

2. I was wondering where you live (area) because you are so young a referral to a Rheumatologist would be a good idea & ideally someone who specialises in PMR just to rule out any other diagnosis.

Thinking of you

MrsN 🌺

PMRPRO is our Resident Expert and you’ll find her especially knowledgeable.

[Curlytot2008 in reply to MrsNails]

I'm so sorry for the delay. I spent the night in ane. The pain I was experiencing was just out of this world mainly in my shoulder which is how it has all started. So I've spent my morning trying to get comfortable and pain-free not much luck in afraid. But thank you everyone for your comments i will make my way through them shortly x

[MrsNails in reply to Curlytot2008]

Bless You 🌺

Don’t worry about replying we all understand, touch base when you feel up to it! x

[Loopy65]

Welcome - sorry you need to be here though!

I thought I was young at 54 for diagnosis - yikes @27 - so sorry. It’s not a life sentence though by any means and once the hideous pain at the start is under control you’ll feel so much better.

My initial horror level pain was last December and I can still remember it vividly - never known pain like it.

After 2 or 3 days of Pred though it was hugely better and it stopped being all encompassing thankfully.

The wise ones here have been so much help and it genuinely makes all the difference having a team of people who have ‘been there, done that, have the t-shirt’ before us!

Welcome again and hope your pain levels will be a lot better very soon 🙂

[ChinaWuntoo]

Your description of night time was exactly my experience. I used to get up every night to sit in a chair, listen to music. Horrible, horrible.

I also had complete relief at six hours after my first dose. And then, like others, I did too much and .. ouch.

I would think that if you don't get relief from pain in about four days you should query the diagnosis. But we all are different.

Hope you change for the better very soon.

[remission]

I would have to say the same, very unusual for someone as young as you to have PMR,

so would certainly have more test taken, in the meantime, I had been advised from the get go that the prednisone is more effective if taken all together and in the morning. I was started on 40mg for 3 days and then kept dropping dramatically and it cleared up all the symptoms very fast. Listen to your body and rest as much as you can, give yourself permission to do nothing, first priority has to be to get it under control, it's impossible to keep pushing through when you're in that much pain. I also take CBD, 20 mg, as I find it relaxes me and helps reduce my inflammation. Hope things improve for you soon.

[Jackoh]

Hi and welcome. Many have given you very good advice. I think as many have said perhaps ask for referral to rheumatologist as it could possibly be something else. See how you get on with the pred and let us know. If it does turn out to be PMR and you do start to have an easing of your pain on the pred- all well and good. Let us know how you get on. 😀

[PMRpro Ambassador]

Just to add to and reinforce my earlier comments - and those of others:

Is this diagnosis by the GP? If so, I think you need to demand an urgent referral to a rheumatologist. There is precedent for someone in their 20s being managed for PMR - but it was only after EVERYTHING else it might have been had been ruled out.

thefreelibrary.com/A+24-yea...

It is so unusual for patients under 40 to have the PMR we talk about that it MUST be handed over to an expert when suspected in younger patients. Even in the usual age group (over 50) probably up to a third of PMR diagnoses made by a GP turn out to be something else. While if it responds to pred and you get pain relief you might think that is all that matters, most of the other causes will do better on the correct treatment for them. And one or two are nasty - some forms of cancer can cause PMR as a presenting complaint.

[Irishfurbaby]

Hi

I sleep on an electric blanket and take a sleeping tanlet. This helps with the aches

[Hildalew]

Hi , I'm sorry we have to 'welcome' you to this forum. I'm not one of the really knowledgeable people that you have heard from - and will hear from - but what I know about PMR (apart from the smidgens t he rheumatologist told me at our first meeting)I have learned from those wise people and from my own experience (just under 2 years).

I want to second the comments made by 'remission' and 'tawny owl': try to learn to slow down and give yourself permission to do nothing. I would add, try to let go of your workaholism.

And, once the Pred has chased away the pain, be very strict with yourself (in the gentlest kind of way, of course) and don't try to do more than your body can do without grumbling.

It is a great temptation because (if it is PMR and Pred has done its stuff), and unless PMR works differently in young people, you will feel as if you can do anything. You can't.

If it turns out not to be PMR and that Pred is not the right thing, the things we have said about slowing down/letting go etc, will be just as good for practically any illness/condition.

Very, very good wishes for the journey you have found yourself on.