Diagnosed this week and given 15mg pred , started today so don't really know what to expect , so any hints will be much appreciated x
Newly diagnosed: Diagnosed this week and given 15mg... - PMRGCAuk
Newly diagnosed
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Rosbud
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Hello Rosbud, and welcome!
I have had PMR since November 2015, diagnosed Jan 2016. This forum has been and still is so helpful to me. In fact my diagnosis would have taken a lot longer had I not come across the forum.
Very soon I am sure Dorset Lady will arrive and send you her very well thought out tips for beginners. Read and learn! So helpful!
All the very best to you!
Mary
Hi
Sorry you have joined the PMR club
I expect like a lot of us you have been suffering for some time
Preds should work and within a few hours you should feel so much better
Just be kind to yourself you will find you are unable to do as much as you used to so listen to your body and take care of yourself .
Welcome Rosebud. take a look back through archives of this forum. It is a vast resource, both in experience of the participants, and their willingness to provide links to additional scholarly information.
You will find someone online pretty much 24-7, and the wee hours are common hours for some of us to be here. Feel free to ask any question, none are silly or unwelcome. We have all been where you are now.
Again, welcome...jerri
PMRproAmbassador
What to expect? Hopefully a decided improvement in your symptoms! But for some people 15mg is not quite enough - the most recent guidelines suggest the lowest effective dose in the range 12.5 - 25mg. So if after a week you HAVEN'T had an improvement ask your GP if you could try 20mg.
rheumatology.org/Portals/0/...
in case he is reluctant.
You may not be 100% pain-free, many people aren't. You should stay on that starting dose for 4 to 6 weeks until your blood markers have fallen to normal range and your symptoms are stable and then start to reduce SLOWLY. That means not more than 2.5mg at a time and preferably 1mg at a time - never more than 10% of your current dose - and staying at each new dose for at least 2 or 3 weeks and preferably 4 to be sure it is still working.
All the best.
Welcome Rosebud,
Lots of support and information here. Please take life easy, don't do too much just because you feel much better. It's a good idea to have a look at some of the older posts. All good wishes.
Ooops - yes, thankyou for reminding me! Rosebud: Feeling better is not a sign you can go back to normal duties. If you do your muscles will let you know and you'll think the pred isn't working! Pacing and resting is the order of the day - walking and moving around is good, nothing in the least bit heavy yet.
DorsetLadyPMRGCAuk volunteer
As I've been mentioned in dispatches I'll send you a copy of a couple of things - rather a lot to take in, but here goes! I
a. First is what I send to newcomers - and
b. Second you may understand more once you've been on Pred a while.
******************
This is what I send to newcomers, hope it will help you understand your illness a little better, and enable you to control it rather than the other way round.
Apologies if I'm repeating what you already know.
It's what I've gleaned from my own illness (GCA, now in remission) and others' experiences with GCA & PMR over the last 6 plus years. I have no medical training nor expertise, except from a patient's point of view.
There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites etc. Too much to take in all at once.
PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illness can be controlled.
Lots of us are never sure what caused the underlying conditions of GCA and/or PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.
In PMR the most widely affected blood vessels are those in your main muscle groups - shoulders, hips, sometimes knees. In GCA it also affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the torso (Aorta). If only affecting your head it's sometimes referred to as Temporal Arteritis (TA). Serious sight problems can arise if the ophthalmic artery is affected and stops blood getting to the optic nerve, if that's damaged then partial, or all sight can be lost. If your Aorta is affected it can lead to strokes, aneurysm etc.
The only drug that controls that inflammation is Prednisolone (Corticosteroids), as I said it does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Unfortunately it does have some rather nasty side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes, high blood pressure and hasten cataracts, but not everybody gets all the side effects, and they can all be managed.
Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes less, occasionally a lot longer. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3 months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!
The initial high dose (PMR: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.
When you collect your first prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or doctors surgery may have leaflet.
The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not!
As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.
If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.
Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best. Just ask!
Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced daily around 4am; some people take their Pred around 2am so that by the time it is fully in their system (uncoated about an hour or two; coated about 3-4 hours) it's ready to fight the inflammation.
Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.
There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.
Look up 'Spoons Theory on web, (Butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.
You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, Yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscles recover, and that now takes longer.
Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.
As I said at the beginning a lot of information to take in, but hopefully you can come back to it as and when you need to.
Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime.
***********
Living with GCA and PMR is a bit like living with a recalcitrant teenager. You're coasting along through life quite comfortably, with maybe the odd unusual occurrence when suddenly out of the blue this 'monstrosity" hoves into view.
Everything you took for granted prior it's appearance is suddenly turned upside down - it grumbles first thing in morning making getting out of bed an impossibility without the accompanying grunts and groans leaving you like a bear with a sore head...and shoulders, hips and anything else you like to mention.
The mess it leaves in its wake makes you tired just thinking about it, apparently making beds, tidying rooms and washing-up are a definite no-no nowadays.
It invites a mate or two (Pred & maybe others) around for a sleepover - you must be joking. Sleep's the last thing on their mind - if we're awake why isn't everybody in the house wide-eyed and bushy-tailed!
And all those endless journeys with it to see professionals who tell you - "he must do better" and "he'll never get anywhere in life if he doesn't listen in class and follow the curriculum".
So you sit down with it, and have a frank head to head, stating all the obvious things, like..if you want a good job, earn lots of money and be happy in life you need to knuckle down and follow the rules. Okay Mum (or Dad) it says, and that's fine for a time, sometimes a few weeks, or months or even a year and then it gets a bit too ambitious and raises its game (probably to impress someone) and it all goes to rats - again. So back to the "must try harder" syndrome accompanied by the mutterings under breath of 'I'm bored with this now, wish I could leave school", "nobody understands what I'm going through", "why can't I go out and enjoy myself with my mates", "does my bum look big in this", blah, blah, blah.
Actually as it gets toward the higher teens, and the hormones stop raging quite so erratically, it somehow becomes much more manageable, and amenable almost pacified, but don't be lulled into a false sense of security it then find new friends, Ade & Des (nod to MB - don't want to be accused of plagiarism) who again leave you shattered and not knowing whether you're coming or going. Or as the kidz say - on your a*** or your elbow.
Eventually when all that teenage angst is over, it decides it's now fully grown up, and thinks it might like to strike out on its own and actually move out!
Life returns to normal .....ahh bliss! One day, one day!
Take care.
Well said DL. A lovely and very comprehensive answer to an Newbie - couldn't have put it better myself!
No worry about plagiarism (refs to 'Ade & Des' etc), all part of the service 
Well now you're soon to be a published author -credit where credit's due - don't want to be accused of pinching your royalties!
Or anything else!
Thanks DL, I won't let it go to my head - promise. Just form an orderly queue at Waterstones (as if!).
As for pinching my royalties: as one of our recently, mysteriously departed friends (P*****70?) used to say: 'Ohh, You are Awful - But I LIKE You!'
Oh, I wondered who you meant at the time - now I realise. Strange!!
Yep, DL. Very strange for one of the few of us 'Lads' here who was such a regular, enthusiastic and positive contributor at many levels.
We can't guess why he disappeared so suddenly, but just hoping he's ok..
MB
His profile is now shown as 'hidden ' which would indicate he's either done that himself or the systems done something. If he was just not responding at the moment, then his profile wouldn't have changed.
We may never know.
Yep DL. My hunch is that the person's personal circumstances (?) might have prompted his withdrawal, more than anything else.
It's a shame, since the contributor was a very positive and open contributor to this forum.
But, as you say, we may never know..!
Great information ,thank you so much x
Thank you, DorsetLady, this has been very helpful!
Excellent overview, DorsetLady. I'd like to add, as the saying goes 'getting old is not for sissies' - neither is PMR/GCA. The journey is long, frustrating - but achievable. These are manageable, controllable and all fingers crossed - curable.
All the best Rosbud.
( was diagnosed GCA in December 2016 and now - under hospital rheumatologist management - reducing prednisone, dropping 1mg every month. Currently on 7mg. All ill-feelings are side-effects of steroids which will go in time.)
DL, I really would like to send this to a cousin in Sri Lanka? She hadn't been well for months, vision affected, severe headaches. Unfortunately, none of the consultants connected the symptoms to one cause (the optometrist suggested stronger glasses!). That is until I posted on Facebook a NZ overview of GCA published to help medical practitioners. I told her to see a rheumatologist, which she did, and immediately was diagnosed GCA and steroid treatment commenced.
As a newcomer, she's going through all the agony we 'veterans' know all about and your overview will help a great deal.
Please do. Just sent you a message.
Hello Rosbud
Greetings and Welcome to the exclusive club that many of us had ever heard of, and none wanted to join!
The 'Aunties' (PMRpro and DorsetLady especially) here have said it all, so I won't duplicate what their wise words. All I will say is, you are in trusted and expert company here - and we have some good-hearted fun in between the tough bits. Fingers crossed for you in the meantime, and keep us all posted on your journey.
Best wishes
MB
(Honorary 'Uncle' - allegedly...!)
MB
Are you publishing a book?
Article?
Something?
Cos as I have said before, you should.
Need any help? Re contacts etc? Please ask.
Hello Mary, thanks for your reply
Yep, the 'Grand Plan (!)' is to publish a book of my Funny posts (allegedly) here soon. (As always, I blame You Lot for encouraging me...).
Responses to my recently published articles in the PMRGCA North East ('You Are Not Alone) and the main PMRGCAuk News Wire have been great. So, it's WIP on the packaging and publishing of my various 'Funny' posts during the past year-or-so in book form. The Launch date is mid-November / early December if all goes to plan.
The verdict? Many of us seem to need an antidote to the more serious stuff of PMR and GCA, and The Book will hopefully provide this at the same time as raising some much deserved revenue for the charity.
Yes, contacts and support are always appreciated.
MB
Hi Rosebud and welcome to the club you didn't want to join. I expect like most of us you are relieved to get a diagnosis and apprehensive about taking steroids. This is a great forum for support and real expertise, humour and hugs when you need them.. As things come up for you share them here, someone always knows something useful. A rookie mistake is to think you can carry on with your usual life, you can't, you need to acknowledge that you have a serious systemic illness and you need to adapt your life accordingly for the duration. Pacing is the key, once you get the right rhythm of rest and scaled back activity it begins to feel ok. Best wishes Jane.
My pacing tip is from my GP who said I had to be more like a lithium battery than a duracell? After carrying out a task/chore, sit down and do the crossword or something to recharge.
The analogy works for me
Thank you , just got dressed and am whacked ,so you've put my mind at rest x
Good advice for life! If you can get away with it!
When diagnosed and 15 mg pred had relief the next day
Months later i am still painfree but dont have that initial burst of energy
Fingers crossed then , feel shaky today but will go with it x
in reply to Rosbud
I hope you get relief. I remember the getting dressed and undressed feeling A. still occasionally hard after 12months but gets so.mych better. I used to have a panic attack trying to get sleeves off my arms as I felt trapped and unable to get them off. i have bought larger tops for moment which are easier to manage.
Just take it easy and rest. Let the steroids do the work for a bit. 🌻
Hollyseden in reply to
I also have trouble putting on and taking off tops because my shoulders are still very sore sometimes. Not as agonising as before I started Pred though. Good excuse to go buy some new tops in bigger sizes. Every cloud has a silver lining 😊
I can relate, mostyn.
That often seems to be the dilemma with PMR and / or the steroids to manage the symptoms of it. You feel 'better' in one way (e.g. less pain / stiffness), but still not 'right' in another (e.g. whacked out). Fatigue and / or depleted energy levels seem to be a hallmark of this disease as much as anything else. It can be very confusing, to say the least - I've been there and got the T shirt 
My best analogy is that, with PMR / GCA, the body's normal, natural 'energy battery' (cortisol production?) is severely depleted due to the nature of the underlying auto-immune illness, and only topped-up synthetically via the Preds (or similar) in the meantime.
At the same time, the Preds (or similar) effectively saborage the Adrenal / HPA feedback process (n.b. this is very complicated medical stuff which I'm sure Aunty PMRpro and others can explain much better then me).
Result, in lay-person's terms? With PMR / GCA, the Body (and Mind?) are in a state of chemical imbalance / stress whilst being supported synthetically, and until or unless these natural physiological systems find some equilibrium once again. That, of course, depends on when and if PMR / GCA 'burn-out' / go into remission.
Until then, we just have to roll with it, be patient, and pace ourselves physically and mentally. That's probably the most difficult bit of all for many of us... 
That's my best shot at a very amateur explanation - hope it helps!
MB
aka 'Uncle Mark'
Hi Rosebud,
Welcome to the PMR Club. It's an odd club as, of course, we would really rather not have any new members!
As you will have discovered, this illness is a real pain, and l am sure that, like most of us, you absolutely hate being on steroids, but as other have said, you will have good days and bad days. Eventually the good outnumber the bad.
I have found meditation to be a great help. I try to do half an hour in the morning and the same at bedtime. It helps me fall asleep at night. (If you are interested, you can download on your phone videos of John Kabat Zinn meditation from YouTube. )
I aim to walk everyday and do some yoga - I know this might not be possible for everyone, and some days I have to go back to bed at lunch time and sleep for a few hours. Gentle exercise is best. I've given up my aerobics for the meantime!
This forum is great for advice, but everyone's experience of PMR is different, and reading too many of the posts can make you feel a bit down, so you may want to dip in and out.
Some doctors don't seem to know as much about it as some of the patients. One problem is that many doctors give patients a reduction regime and tell them they will be off the steroids after 18 months. It is then a big shock when you have a flare up and feel rubbish again. Doctors also tend to talk about 'stiffness' when in fact for many of us it's real pain that we feel.
It helps to keep a sense of humour. I told my husband that this illness was likely to make me grumpy sometimes and he said 'how will I be able to tell the difference?'
The 'mean' age of onset for PMR is 70, and I am only 54. I tell my husband that he is married to a 54 year old - in the body of a 70 year old! I spent a long time feeling hacked off that I had this illness while younger than average, but have now told myself that perhaps its easier to cope with it when you are younger?? Working life is tricky, however. So is having PMR and menopause at the same time...
I find that it helps to remember that many people have much worse illnesses than this, and there is a light at the end of the tunnel - it's just that you can't tell in advance how long that tunnel is going to be.
All good wishes.
Pam
Husband's alway say the sweetest things🤔
Pam, some very good advice and insights - thank you.
My husband seconds what your husband says! And we both laughed 😁
This is completely off point!
My thought for the day: Music
I woke up this morning and thought bout how lucky we are to be living in this era. A couple of hundred years ago, the only way to hear music was to go and see a live orchestra or band. If an orchestra played a tune you liked, there was no way of hearing it again, unless that same orchestra came to your nearest city at some point in the future. This was, of course, only a possibility for those who were rich. Poorer people would have had music from local bands, but again it would have been a rare treat and you had to listen to what they could play. When I was a child, the radio was great, but again you had no control over what was played. You could only hear a piece of music if you or someone you knew had bought the record. Now, I can think of any piece of music I fancy (Pink Floyd's Breathe in the Air; Beethoven's Moonlight Sonata; Adele's Someone Like You) and get it on my PC or phone within minutes. I can play it again and again, whenever I like and as often as I like. There's an app that let's you hum a tune, and it will find it for you. Amazing! Happy listening, everyone!
So agree, couldn't get through the day without music - all genres (well almost). My late hubby had a beautiful tenor voice and was always singing. Unfortunately I can't but I do love it.
Appropriately am going back through Elvis Presley (long-time love! ) and Glen Campbell songs at the moment!
Hello, Rosebud.
I'm so sorry that you've had to join the club; however, know that you've found a good home here where the Aunties (and Uncle Mark 🙂) will take good care of you. I was diagnosed with GCA in May so I, too, feel like a newbie. Here are some things that I have learned here that have helped me so far; 1.) Diet- low carb and watch your sodium. So far I haven't had any steroid cravings and have actually lost about a pound a week. 2.) Take your calcium at a different time than your Prednisone. They don't play well when taken at the same time. 3.) Be gentle with yourself. Take walks (good for your bones) but don't beat yourself up if you need to stop to rest . 4.) Never be afraid to ask questions here. This place holds a wealth of information, really nice, educated members, and will be great assistance for you on this journey that you didn't ask to go on. Best wishes!
Hi Rosbud
Welcoming me to the club! I am fairly new also 6 weeks in). Getting dressed, showering, hair....everything was so painful and difficult to do. I actually started going to my hairdresser just to get a good wash and flat iron 1x per week, so I wouldn't have to do my hair.
When my GP diagnosed PMR, he gave me 15 mg prednisone and said it was a miracle drug. I had high hopes for two reasons: 1) for the obvious pain relief; 2) just knowing it was PMR and not something else. I was disappointed the first few days, as I didn't get any pain relief, but day three by the evening, I could raise my arms above my head, so for some it takes longer.
For me, I felt like I was in the "Groundhogs Day" movie. I would wake up, in terrible pain but by dinner, much better.....go to sleep and repeat. It took weeks for the mornings to get better....I am not sure if it takes awhile for the pred to work or if I am just getting used to the pain.
I am also in my early 50's and menopausal and I think there is a connection with the hormone changes. I had terrible hot flashes months leading up to my PMR onset, then they just stopped. A few of my morning pains have returned and so have the hot flashes....coincidence?
I see the rheumatologist for the first time next week to verify my GP's diagnosis, but I think this forum is better than any doctors.
Hi,
Hot flashes/flushes can be part of the PMR, and may also be the Pred - so no winning there then!
Not everybody gets 100% relief from pain, but you should expect at least a 70% improvement. 6 weeks in on 15mg you should be feeling better.
It is recommended that you take your Pred in one dose early morning, but sometimes you may need to experiment a little. If it's uncoated tablet then it can take up 2 hours to work, so some people find it's better to take around 2am so that it's working at 4am when the body normally shed the cytokines which cause the inflammation (pain). Other, who don't want to wake up at 2am (and I can understand that) try splitting the dose, say 2/3rd breakfast, 1/3rd bedtime - that may help with the early morning aches/pains.
See how you go, be honest with your Rheumy about your situation, and don't let him or her get you to reduce on too quick a plan.
in reply to notaseasyas123
I am a flush/flash person...diabetes then menopause now one and pred. I have fan at bedside and if hands and arms up to it I fan .
pebble-sue55 recommended a neck/head scarf that can be soaked in water on another thread. it has gel balls that hold water and can be put in fridge etc. it's on Kleeneze website for 5 pounds. I will be investing. She said it can fit round top of head to cool you too and is nondrip.
Speaking onto my GP on Monday so he can assess how I'm feeling on 15mg , not had mention of seeing Rheumatologist yet , guess I have that delight to come x
Not always!
Some GPs if they are knowledgeable enough can manage your PMR very well. In fact, sometimes they are more interested than the Rheumy as it's not something they see very often, whereas for a Rheumy it's not very new or exciting!
You only really need to see Rheumy if you have problems, or if you have GCA, and even then they're not always interested -at least that the impression I got the one time I saw mine, perhaps he was miffed that it had been diagnosed by an Ophthalmologist- who knows!
It wasn't until I got to 8mg and inflammation worse that at dx that I was referred to rheumy. I am deferring judgement on rheumy at the moment until treatment for my "atypical response" to steroids is clearer as pred goes down and the dmard takes over. But nurse has been ok at hospital for info.
Gp has been more open and have got to see her monthly so don't have to explain same thing over and over. That really helps the process now but I was a bit angry for a bit. Going with the flow now.
I have been diagnosed with PMR last month. Thanks for all the info here--I had never heard of PMR before! I have a few questions:
Any idea as to how one gets this? I have always been very healthy! I very seldom get sick, and when I do, I usually manage to treat it myself. But now, my Nurse Practitioner have become best friends! She's a lovely person, but I'd rather not see her as frequently!
I did have a UTI that I couldn't shake, so she prescribed Macrobid for it. It definitely cured the UTI, but a week or two later, my neck and shoulder, glutes and quads were so extremely painful I could hardly move. Would there be any connection?
Are there any other treatments for PMR besides Prednisone? How about curcumin (tumeric). It is an anti-flammatory. Does diet help at all?
Thank you!
No, no other realistic effective treatments for PMR beside pred. Turmeric may HELP, as can a diet with plenty of antiinflammatory foods but they won't work alone. A new drug called Actemra probably helps - but at £12K a year in the UK it isn't an option yet!!!
PMR is an autoimmune disorder, the immune system is unable for some reason to recognise your body as "self" and attacks tissues as if they were invading foreign bodies such as viruses and bacteria or a splinter. This causes inflammation which causes stiffness and pain in muscles and joints. Probably the UTI you had was the last straw for an overloaded immune system and made it "go wrong" - result PMR. All sorts of things can affect the immune system besides illness - stress of any sort, injury, illness, emotional, can contribute over a long period of time.
Hi RheaV-
I completely relate to your questions and concerns. I grappled with the pred bit in a very big way.. It's totally against my nature to be on meds like this, having taken barely any meds my whole life. I was extremely distressed about having to take pred till who-knows-when!
Having first started at 20 mg, then dropping pred really low while attempting a "mostly natural route" back during late March and most of April (2017) , I found that I was back in extreme pain most of the day. (Regimen of anti-inflammatory foods/ drinks/ supplements, massage, chiropractic, acupuncture 3-4x/week, herbs, exercise,etc) HOWEVER, since re-starting my pred dose at 15 mg (late April 2017), thanks to the wise advice of our "Aunties" here and other contributors, my tapering of pred is going so much better, following their reduction protocols (mentioned above).
And, I've noticed a huge decline in pain/stiffness since becoming gluten free (these last 6 weeks). Going gluten free was something that I had really dreaded, but am finding is not as awful as I imagined-- especially with more gf foods available these days, and especially with my lowered pain trade-off! Going gluten free was coupled with allowing myself to sleep more (guilt free) AND saying "no" to people's activities requests a little more often (also working on the "guilt-free part of that; highly recommend reading the Spoons" link mentioned in your thread here) has made a huge difference. These changes were in addition to what I was doing already since March: walking 8-10,000 steps per day, getting acupuncture, massage and chiropractic treatments which help with pain and stiffness, taking supplements like ginger, rutin, curcumin, apple cider vinegar capsules (to abate cramping), and consuming lots of anti inflammatory foods/drinks like: cruciferous veggies, asparagus, leafy greens, tart cherry juice, etc (you can find extensive lists online).
So, my pred has tapered more quickly because of all these diet and lifestyle changes. I'm now hovering between 7 and 7/half mg pred, and feeling "great" the whole day ("PMR great" that is), These numbers, I'm told, are pretty good, having jumped back to 15 at the end of April/ beginning of May.
I'm about to embark on the next "dreaded" dietary change: going dairy-free. I've fought against the idea since being recommended it by several health gurus, but because the gluten free trial had been so successful, I'm willing to make the sacrifices to help tackle the inflammation (Cheese and butter accompany almost every meal right now!)
So, if any of this info is helpful to you, I'll be glad. I've been helped by so many on this forum. Best of luck to you!
JoanJo
Do be careful eliminating too many food groups - you will have to concentrate on making sure you have all the protein you need to protect your muscles while on pred. I'm not convinced about removing dairy - it isn't essential for calcium but has a lot of the protein in our diet. So if it doesn't make a noticeable difference - don't feel you have failed!
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