Diagnosed 7 days ago: Hi. I was diagnosed (on my... - PMRGCAuk

PMRGCAuk

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Diagnosed 7 days ago

JoanS
JoanS

Hi. I was diagnosed (on my birthday) with PMR after 5 weeks of worsening hip, bum and thigh pain and stiffness, plus falling asleep and generally feeling unwell, then followed 2 weeks of the same affecting my shoulders, arms and neck which left me barely able to turn in bed as everything hurt so much and creeping around wondering just what was happening to me. Im 62 and and had been leading a full energetic, active fun life.

The blood tests with elevated inflammatory markers, led my doctor to diagnose PMR.

I had sort of expected this diagnosis, having searched so many websites, but It still hit me badly, I felt upset, shocked and very anti steroids.. but was persuaded that without prednisolone, this condition would not recover. The doctor told me that within just a couple of days I would feel as I had before the symptons, Id be energetic, feeling i could take on the world.

Ive been started on 15mg x 2wks, reducing down over 6 weeks to 10mg,, and going from there.

So im on day 7. Yes i am 75% free of the pain and prob similar on the stiffness, though i still have limited left arm range of movement and still have to haul myself out of the car. But i cant believe how fatigued i feel,, i have a" heavyness' sometimes foggy head and just want to do nothing.

But i hate not doing anything, i'll go mad with boredom. Im trying to potter around tackling jobs indoors and the garden and go for a daily walk, but i feel im running on empty,, even when the muscles arnt hurting, i just cant 'get going'.

I guess i just read and believed so much about how euphoric i would feel by day 3 of going on steroids,,,, but im wondering, is this the reality ? I would be so very pleased to hear how others started their journey. Thank you

56 Replies
oldestnewest

Dear Joan, I am so sorry you have been diagnosed with PMR. I think the thing to learn is that PMR is life changing so we need to change our activities and interests and what we do to accommodate them. I find that pampering myself occasionally helps, something I never bothered to do in pre PMR days. There are plusses, I take life in a more laid back way instead of rushing on to the next thing. I now lie back and smell the roses.

JoanS
JoanS in reply to piglette

Thank you, I'm blown away by the kind positive supportive replys

What an awful birthday present, mind you, I found it a relief to finally get a diagnosis, I had feared much worse. My grandmother had MS and that is what I thought I’d got. I did feel euphoric but I think it was a lot to do with relief and feeling that I was being taken seriously at last. I’d had so many tests. Then the reality sinks in and you realise that it is a serious systemic disease that lasts around 5 years in most people and the only treatment is steroids, which nobody wants to take. Fortunately I found this forum that prevented me from sinking into a total despond and gave me all the information I craved. The people on here are remarkable in their positivity and desire to support others. We all take it in turns being the one who needs help, I think.

The fatigue can be awful. You really need to pace your activities and plan to have a proper rest, sleep preferably, in the daytime. Activity seems to exhaust the muscles as if you’d run a marathon when you’ve only tidied up or had a friend over. It is possible to get into a rhythm whereby you can do most of what you want, as long as you plan ahead and try to conserve energy beforehand. People on here travel a lot, undaunted by long haul flights for instance. There is a lot of good advice if you’ve got something big on the horizon.

Do not rush coming off the steroids, this just results in a flare or a relapse. If you successfully get to 10 mgs I would think in terms of reducing by 0.5 a month. Cut a 1 mg tablet in half. The aim is to find the lowest dose you are comfortable at. Prednisalone is our only painkiller, it doesn’t cure the actual disease, it just controls the inflammation.

Your life has changed for now, you do adjust, it is a good time to reflect but as you are probably feeling quite angry at the moment I won’t go on anymore.

JoanS
JoanS in reply to SheffieldJane

Thank you,, really appreciate your reply

PMRpro
PMRproAmbassador

"but was persuaded that without prednisolone, this condition would not recover. The doctor told me that within just a couple of days I would feel as I had before the symptons, Id be energetic, feeling i could take on the world."

Strictly that is incorrect - the pred only manages the symptoms by reducing the inflammation that causes them. It does nothing to the underlying autoimmune disorder which causes your immune system to be unable to recognise your body as self and so attacks it as it would an invading bacterial or viral infection, damaging tissues and causing inflammation. That is what makes you feel unwell and causes the fatigue and it continues to chug away in the background. It makes your muscles intolerant of acute exercise - and that means you have to pace and rest to manage that aspect. It would go away on its own eventually, burning out and going into remission but that can take from 2 to 6 years for about 75% of us, for 5% it doesn't burn out ever. In the meantime, pred allows us a decent-ish quality of life. At the higher starting doses it can cause a sort of mania for some people, they think they can do EVERYTHING. They can't - as they soon find out. But in general - I have a good life on pred, I know how to manage the less good bits and I take full advantage of the good bits.

So many GPs and even rheumatologists (who you would think should know better) have this idea that once we are on pred we are back to normal and weill feel wonderful - if only that were so. It is probably the first year that is the worst - you take time to learn to manage what's going on and get used to the pred. I think the activity of the disease process is greatest at the start and then it tails off, cycling in activity until eventually it just fades away - so when it is relatively quiescent you are able to reduce the dose of pred but may find it flares again if you try to reduce the dose too much. Then there is little option but to accept you need to go back a bit and wait a bit and then try again. We've all been there - we aren't making it up!

I know it is hard to adjust - but if you had real good-going flu would you expect to be able to do things? Just for the moment treat yourself as being ill and find relaxing things to do rather than trying to fight through the fatigue and the sore muscles - because when you do that it becomes a vicious circle and you become down and depressed as well to add to the low mood that is a part of the disease.

Have a read of this

healthunlocked.com/pmrgcauk......

which is a bit more lighthearted look at chronic illness and how to get n with it

and if you are feeling more energetic, this post on another forum has a load of reliable links to info about PMR and GCA:

patient.info/forums/discuss...

Your doctor has suggested what I think is a very speedy reduction - 4 weeks at the starting dose is more normal and 15mg is really the low end - some people need a bit more and up to 25mg is now recommended in the guideliens. More isn't better - just some people need more. If as you reduce the pain and stiffness returns then stop reducing, go back to where you were comfortable, speak to the GP and ask to stick for another couple of weeks before trying again. PMR has its own rules - and won't play if it doesn't fancy the rigid plan someone tries to impose on it.

Don't worry - it WILL improve. In a few months you will see the difference and in a year you will look back and see how far you've come. And I know you are horrified at that concept - but what is the point of us telling you it will be gone in a few weeks when it won't be?

If you have questions or even just want to have a scream there is someone here just about 24/7, there are members all over the world. You won't have to wait long to be heard.

Where in the UK are you? There may be a local support group and that often makes a big difference - you hear and read us here, there you speak to real live friends. Obviously your photo is from your Italian (?) holiday!

JoanS
JoanS in reply to PMRpro

Thank you,, I really appreciate your honest and realistic advice and info on Pmr. It's great to feel I'm far from being on my own . It's amazing that no one I know, has any knowkedge of this illness,,,,but then I hadn't ever heard of it either before it arrived. What a great forum .

England05
England05 in reply to JoanS

I was just like you still have aches and pains cannot do what I did before but I do what I can when I can, it has been 2 years. Is a great forum so much good advise. I wish you well

JoanS
JoanS in reply to PMRpro

I had no idea that the' photo I downloaded appeared in all its 'giant' size glory!! Thought it would just replace the little red rose.... yet to find a way of deleting it.. and yes,, it was amazing Italy last year.....

PMRpro
PMRproAmbassador in reply to JoanS

But where? None of us mind big photos if they are beautiful. And sorry - no use asking me about technical stuff...

JoanS
JoanS in reply to PMRpro

Florence☺!

PMRpro
PMRproAmbassador in reply to JoanS

Thought it was - haven't been for ages even though I live in Italy...

JoanS
JoanS in reply to PMRpro

Wow,, how envious am I,,, there was I thinking you were in the next County, I'm just across the border in Somerset.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to JoanS

You can reduce it first on your computer - depending on what photo app you use. Some are easier than others, just a matter of trial and error.

To replace existing rose, go into profile and edit it. Tap on photo and you should get a message like upload photo or similar...you can then replace with new photo. Go through page ‘til you get to “save changes” button. You can edit profile as many times as you like until you get what you want!

JoanS
JoanS in reply to DorsetLady

Great, thanks

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Joan, and welcome,

Not every body gets 100% relief, but should be at least 70%. The fatigue may well be the Pred or the PMR, probably a combination of both. Plus its very unsettling early days until your learn to manage your illness.

Try and do small jobs, something that's achievable, then sit down and rest.. that way you don't feel guilty, nor get too stressed about things. You do need to adjust to the "new" you, and that takes time.

If, after the 2 weeks you do not feel any better, then you need to speak to doctor before you try and reduce - if your current dose is not coping, then a reduced dose certainly will not.

Have a look at attached, it may help you understand your illness a little better, and the more you understand, the better you will cope.

healthunlocked.com/pmrgcauk...

Take care,

JoanS
JoanS in reply to DorsetLady

Thank you,for your support and advice and the link.. I'm really blown away at the genuine support and kindness of such nice people .

I’m a recent diagnosis too and it is very hard to get one’s head around it all. However, this group is very supportive and knowledgeable so just ask. As my Scottish granny used to say,

‘Keep the heid’ meaning keep calm and don’t get upset. As a very active person myself, I have learnt that doing too much backfires on yourself so pacing yourself is now a requisite!

JoanS
JoanS in reply to Cyclegirl54

Thank you,, I think this support group will be invaluable to us as newbies, I do wish you well as you too go on this journey.

Hello JoanS,l did feel wonderful when l was given my first dose of prednisolone,the only problem was that l was unable to sleep at first and could not wait for morning to come so that l could get on with things in my garden which had been very neglected because of the PMR. I must say though that as l reduced the dose,l gradually began to slow down again. I am on 3mgs now but do not feel as well as l did pre PMR. The previous posts have explained how you may be affected ,you do have to pace yourself,overdo things and you will feel very tired. It is however much better than when you are first diagnosed,and l am very grateful for the steroidsWelcome to this very helpful forum and l wish you all the best .

JoanS
JoanS in reply to Grants148

Thank you for your response ,, yes this forum is a tremendous help and has such positive responses on how to cope whilst experiencing this illness.

Welcome to the forum Joan.

I tend to agree with the other comments re your taper being rather fast, but time will tell.

Just one tip: you might not be aware that when you drop your steroid dose you can get steroid withdrawal pains. It’s your body revolting and screaming for its ‘fix’! The more you drop a dose by, the worse it can be. It tends to happen pretty soon after a reduction, days 1-3 approx. For me I can feel it by the evening of the first day, worse on day 2, fading by day 3. So, steroid withdrawal feels very much like PMR, but it’s the timing you need to be aware of. If you drop by too much pred and symptoms come back around one week (or more) and steadily get worse, then it is likely that your dose is too low, and only by increasing pred again will you gain control over the pain. Just wanted you to be aware, as the first drops with associated pain may make you think the PMR is worse, but it maybe ‘just’ steroid withdrawal, and that can be eased with paracetamol, unlike PMR which looks at paracetamol and says ‘Paah! I don’t think so!’

Hope that’s understandable. If not, just shout.

JoanS
JoanS in reply to Soraya_PMR

Thank you for this,, I had very limited ideas as to how when the time comes to reduce,, just how I might expect to feel... So little helpful info from the gp, so this is really helpful

Soraya_PMR
Soraya_PMR in reply to JoanS

Best advice is to clear the decks for reduction day and for about a week after, so that you don’t have commitments. Then just relax and take it easy that week. If you have an unavoidably busy week, best to delay the reduction. And don’t reduce if you’re already in pain, as it’ll only get worse.

My GP gives NO information. Never has, and I don’t expect he ever will. But I have found, as will you, that learning how to manage this ‘disease’ is from the people who have already, or are still walking the winding path of PMR.

Insight329
Insight329 in reply to JoanS

HA! We just so happen to have 2 EXPERTS here regarding reducing Pred. DorsetLady and PMRpro. And I mean EXPERTS! Don't hesitate to ask questions, they are more than happy to assist.

By following their slow methods, I've reduced from 40 down to almost 9 with only 1 flare and that was part my fault in that I forgot the rules of the game: It's not a race to zero; listen to your symptoms.

Great explanation, Soraya!

My doc didn't explain to me the difference between steroid withdrawal pain and a flare. Fortunately, I must have hit upon this here before I had my first experience with the withdrawal pains. Had I not been aware that it could happen, I would have increased my dosage thinking it was a flare. Instead I waited it out and within a few days my body said "ok, I accept this dosage".

My doctor is great; but the knowledge that he gave me was like a Power Point presentation - bullet points. This community takes those bullet points and explains what them mean and how to make them work.

PMRpro
PMRproAmbassador in reply to Insight329

"My doc didn't explain to me the difference between steroid withdrawal pain and a flare"

Probably because he didn't know. Like a lot of things to do with PMR...

The belief that flares are inevitable with PMR/GCA and pred reduction is probably due to that fact. It wasn't a flare really - just you told the patient to reduce too much at one time.

Insight329
Insight329 in reply to PMRpro

hmmm...I think I'll bring that up when I see him next month. If he doesn't know about it, he's about to learn yet another thing from this forum. :) Of course, I'll do it diplomatically.

Me to doc: "Yes, I'm down to 9mg (hopefully). But thank goodness I knew about steroid reduction pain coming in the first few days of a reduction compared to a flare coming later in the reduction, otherwise I would have thought that I was having a flare and would have increased. However, I road out the reduction pain for a few days and no increase needed."

Sound diplomatic enough?

JoanS
JoanS in reply to Insight329

Definitely😉

PMRpro
PMRproAmbassador in reply to Insight329

Possibly - depends how sensitive a flower he is!!!

Insight329
Insight329 in reply to PMRpro

I can almost hear him, "That's great, Joy". Not sure if he'd ask questions then if he wasn't aware, or ask later as he did when I told him about DSNS method of tapering. I told him about the plan and then later got an email with 'tell me more'. He's the one also that I gave the Mayo report about side effects to him and later found out from a medical student that joined us for an appointment that he had incorporated it into his treatment of patients after I gave it to him. (All thanks to you.) I think you'd really like him. He's still eager to learn and eager to teach, too. I adore him. Hit the Rheumy jackpot when I got in to him. So I'll throw out pain vs flare and see where that goes.

PMRpro
PMRproAmbassador in reply to Insight329

That's what I like to hear!!!! :-)

Telian
Telian in reply to Insight329

Great to hear a GP listening and actually hearing!

JoanS
JoanS in reply to Soraya_PMR

Thank you so much for this,,, I really appreciate your really helpful insight into just how I might feel when I do reduce,,, time will tell I guess. So many gaps in what to expect filled in by great people, gaps that the doctor couldn't fill

Welcome to our community, Joan. You don't know it yet, but finding this forum is a real gift to you. (I say that because it certainly was for me.) There's no place like it regarding sharing evidence-based medicine and receiving empathy and support.

Two things that I learned when I first joined (May, 2017) is to change your diet to low-carb and ditch the sugar. These changes will help you in a number of ways - help with the blood sugars, keeps those terrible steroid cravings at bay and will help you from gaining the weight that many on steroids gain. (If I heard you moan, yep, I moaned too. But by doing so I was able to ditch the then-recent diagnosis of diabetes, haven't gained any weight, and I have no food cravings.)

The second thing is don't take your calcium and Prednisone at the same time. They don't play well together. I take my Pred first thing in the morning with breakfast, wait 2 hours and then start taking my other medicines.

Also, do take time to read past posts and explore the site. Lots to learn and the more you learn about it the less scary it will become.

Again, welcome to the community. So sorry that you had to find us, but glad you did.

Me: PMR/GCA diagnosed 5/22/17, USA, reducing from 10 - 9 mg.

Thank you,, great advice... there's so much to get my head around but I'm feeling so much more positive than I was.

Hi Joan I too have just been diagnosed after 6 months of investigations. I too have started on a high dose of prednisone which has helped the stiffness but the fatigue is awful and depressive. I am used to being a busy active 60 year old but now feel like a very old disabled inactive lady.

I think I have learnt more in the last ten minutes on this site than from any doctor thanks for the info onwards and upwards 🤞

Insight329
Insight329 in reply to Nanna60

Welcome to the community, Nanna60.

Hidden
Hidden in reply to Nanna60

If I have not said HELLO Nanna60, Hello and welcome. Sorry you had to joins us, but were happy to have you! I hope you get as much out of this site as I have in the last 5 months!

Hidden
Hidden

It's a lot to take in so I will just say welcome!🌻

My beginning was a shock.. hit by a car while riding my bike..also on my birthday.. and finally diagnosed with ensuing PMR a month and a half later... started on 15mg and I did feel good right away. I think you could talk to doc about starting at 20 if it doesn't get better. but Listen to other's advice..before mine. My trip to 10 was not 6 weeks but 5 months...so don't expect to reduce that quickly I shouldn't think. There are huge downsides to PMR and prednisone... exhaustion being one..but that might pass. Read about the Spoon Theory. It helps explain things to friends and family. So now after 6 months I see my hair thinning, my skin bruising terribly, my moonish face and wide waist.. but I have soft skin, and NO arthritis!!! NONE. I get up without hobbling and I can make a FIST!!! ( watch out mean people..I can make a fist!) And of all the autoimmune diseases...this one goes away! Hard to be grateful when first diagnosed.. but you will find it comes! Also don't let the docs put you on Bone Medicine. (Fosomax. et al.) get a Dexa scan and even then I would not take it! Hang out on this forum..it is filled with caring people with LOTS of knowledge and funny stories to brighten every day. Good Good luck!

Hidden
Hidden

Hi Joan, I am so sorry to hear about your diagnoses (and on your birthday!). The Universe can be cruel! I too was a "young," energetic, busy, working, social 63 year old who suddenly had a ton of bricks fall on her head! I was diagnosed in Nov 2017 with both GCA&PMR. It's a shock and takes time to adjust, but you'll be okay. All you can do at this stage is rest, rest, rest. I wish you well on your journey and hope that this forum will be a Godsend for you, as it was for me.

Welcome JoanS

That's a birthday you won't forget, I got cancer on mine...

Anyway it's looks as if it's all been said and with all the support on here you won't go far wrong. Listen to the advice and patience is the key - a lifestyle change is not an option but you will gradually slide into it but it will take time. You are lucky to have found this forum early in your illness, you are already reaping the benefits.

All the best

Well, Joan, so much to take in one week into your PMR journey, it's all so confusing at the beginning but hopefully just reading these responses is comforting and practical and helps to make you feel less isolated. The only thing I can contribute is to avoid stress, whether from people, or situations but also stress we create ourselves especially very understandable anger at 'losing yourself' to PMR- it's a thief in the night, stealing our vigour and vim and running amok with emotions alongside the physical limitations.

Most of us here have gone through the kicking and screaming against our altered state - PMR just loves stress so deny it the pleasure and (somehow, the difficult bit) come to terms with the condition, it doesn't last forever, manage it with pred, never be afraid to ask for help here, enjoy the good days, rest on the not-so-good, the boredom will eventually turn your mind to other ways of being you that perhaps you've never had time to explore. It can be an interesting (if sometimes rocky) journey, who knows the talents you might discover! I wish you lots of luck, and patience - you've made a great start by reaching out :-)

JoanS
JoanS in reply to Slowdown

Thank you , i really do appreciate all the wonderful words im reading

I was 53 so it was a bit of a shock, but I had feared it could be MS or cancer. PMR is pretty awful, but it is not a terminal illness nor is it MS so I try to be grateful.

I do think you need to consider discussing with your doctor a slower reduction regime.Mine said I'd be off the pored in a year, but that was 14 months ago and I am struggling to get below 10 mg. You may be able to reduce more quickly, but don't beat yourself up if it doesn't quite work out like that. Most people take about 4 years.

As others have said, you need to find new hobbies (yoga rather than aerobics; slow walks rather than jogging) but there are many delights to be had in taking life at a slower pace.

This forum is great - fantastic advice from those who have been there, done that and bought multiple versions of the t-shirt! I hope you feel better soon.

Hi Joan and Welcome to this Group.

I am new to PMR 2 mos now.. so I will not be giving advice.. however you are in the right place for clinical insight and advice. I often re read the posts from our most scholarly PMR friends here just to remind myself not to taper to quickly and refresh my mind on the important things with this disease. Ie.. rest, calm, and keeping a sense of humor . I too have been a very busy lady and have Never done anything slow in my life. So what a change for me. So far I am holding my own.. but I must remind myself often to accept this . It makes me slow down and take it a bit easier. Not a bad thing.

The best of luck. Stay in touch!

JoanS
JoanS in reply to Leilagirl

Thank you and look after you as we take life on the inside lane for a change!

Leilagirl
Leilagirl in reply to JoanS

Yes you are right. It definitely feels weird being the needy one And not the one that gives the care ..Lifelong.

Hi Joan Welcome, I was relieved to find this site and the support here. Must be something with birthdays and age 62, because I turned 62 March 17th and diagnosed a few weeks prior. Have been taking Pred, methotrexate, folic acid and alendronate. Maybe I am fortunate but I am 100 % pain free ... but I do feel those nasty drugs creeping inside me. I am back at work for almost 2 months now, working out, biking and hiking. Back to most of my activities but really really pace myself, if I am tired I rest. Pred can give you super powers, don't let it fool you. Good luck.

Paulina

JoanS, we are all different and each case is different. I am still very active, skiing and bicycle riding. Has the PMR and Pred effected my life, yes at higher doses, but not under 10 mg. I taped very slowly after a quick taper and bad flare. Take your time and do not rush it's not a race! Good luck and think positive with a smile on your face! ☺️

Leilagirl
Leilagirl in reply to Michdonn

Hi Michdonn

What slow taper worked so well for you if you don’t mind me asking. Thank you!

I’m on 10 mg to start.Became very impatient at two weeks and three days and I taper to 9 mg. Bad idea! So I went back up to 10 and I’ve been there for 2 1/2 weeks again and I’m going to wait until four weeks but in the mornings I still have some discomfort in shoulders and neck. Until the prednisone kicks in about four hours later than I am symptom-free. I am worried though at the four weeks when I go back that I will have a flare. I would like to try 9.5mg And do 10 mg the next day 9.5 mg times 3 the first 2 weeks then will do 9.5 ultimately to go slowly.

Do that then get down to 9 the 4 th week.

Michdonn
Michdonn in reply to Leilagirl

Leilagirl, the DSNS method, patient.info/forums/discuss.... I am tapering from 30 mg currently on 7.5 going to 7 mg, taking my time in no rush. No PMR pain, so I have a smile on my face and think positive. ☺️

Leilagirl
Leilagirl in reply to Michdonn

A big thank you. I will plan on doing this. Feeling good now about this plan.

Michdonn
Michdonn in reply to Leilagirl

Good luck on your PMR journey, don't rush it is not a race. Think positive and smile. Smiling ☺️

Hello Joan

I'm a newbie to PMR. Diagnosed very quickly in November 2017. Started on 15mg and felt much better. Christmas came and I had a bad chest infection, hurt everywhere, trying to manage on 12.5mg. Was being managed by a trainee GP who followed my condition in a textbook fashion.

On Jan 15th I flew with my husband who has dementia to Arizona with a bag full of steroids not really knowing what to do.

I had just found this forum, it saved my sanity, educated me, made me laugh, cry and realise that there were others in a much worse situation than myself.

I felt adrift and after telling them how many steroids I had and days left I was given a plan that worked. Wonderful, wonderful caring people who are going through the same as you.

You will grieve Joan that is a natural response to what has happened to you. Your life will change but there are good bits. I now don't bat an eyelid if I need a nap/sleep I just do it.

The best advice I can give you is read the messages on this forum and the advice the experts give, they know their stuff believe me.

It gave me the confidence on my return from Arizona to tell my GP my tapering plan and he agreed with it. I learnt all about tapering from the forum.

So grieve Joan. Feel angry, fed up, frightened, bewildered and confused on one hand but on the other slowly educate yourself , adapt, read the forum and any other info on PMR that you can glean.

After a few trials and tribulations I am now on 12mg of Pred tapering down 0.5mg every four weeks. I take my dose around 2to 3am, this suits me.

Stick with us Joan, from the newbies like me to the ones with PHDs lol, that is how I see them.

JoanS
JoanS in reply to SheffieldSonia

Thank you, I am truly grateful for all that I have and continue to read from all these wonderful people,, and im already exploring new avenues to hold off the boredom, and finding out already that by opening those new doors, im allowing new enjoyable experiences and some lovely new people.

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