Hi I live in Doncaster and have just joined the group. I was working full time but I am now on the sick and have been since November.
I was diagnosed in Jan 2016 and have only just realised the effect this illness has had on me. Being part of this group will help me deal with the issues I face and educate my Doctor, friends and family. It's good to know how everyone else copes and the strategies used to get by. I look forward to some healthy discussions on this annoying life changing illness.
Hi and welcome,
Not sure how much you already know about your illness, but this might give you a bit more of an insight.
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 (GCA) and others experiences with GCA & PMR over the last 6 years. I have no medical training or expertise, except from a patients 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 to your main muscle groups - shoulders, hips, knees. In GCA it usually affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the 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 or high blood pressure, 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 3months, 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 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 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 muscle 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.
Take care,
Than you for such a full and informative response. I will print it out and think I will set up my own reference file. My main source of knowledge was from Kate Gilbert's book. I would like to suggest HR my work place reads it. This is how I knew about the group. I would also like to thank you for responding so quickly. You am funding it so hard to do nothing. I have always been very active and busy. This forced down time has changed my perspective on the importance of having time to get well and relax. I read a lot more and being part of a group like this is giving me the social interaction I desperately needed. The first group I looked in to was mostly in the US or Canada. Still helpful and useful but this is nearer to home for me. I look forward to future discussions and sharing any useful information or tips that work for me.
Hi again,
Yes most of us on here were busy and always on the go - whether still in work or retired - think that's why we are susceptible to the problem in the first place. Plus never wanting to give in to illnesses either, which probably didn't help at the beginning, I know I should have nagged my doctor more initially. But heigh ho, we are what we are!
Its a good idea to try and educate your HR dept, but don't make it too complicated or long-winded - they'll lose interest - even loved ones can only take so much info. But if you can get the salient points over, then they hopefully will understand want you can do, and what you can't.
If you look at the PMRGCAuk web page, you can find if there is a local support group close enough for you to attend - sure there is. Even just talking to someone over a cuppa really helps - you don't have to explain your illness or apologise for feeling rubbish! We've all been there.
Take care, and please let us know how you are.
There are no groups in the USA and Canada that I know of - all 3 PMRGCA forums are based in the UK. The patient.info group is extremely international but there are still a lot of us from the UK.
Do you have an Occupational Health department where you work? They are very useful people to have on-side.
While her book is a very good introduction to living with PMR, Kate Gilbert isn't a medical doctor by the way - just another patient like the rest of us.
Hi I think I was on a Facebook page PMR without what
Prednisone ? I am not following it now but I will have a look. I like Kathryn's book because it's not medical and unbiased. You can can take from it what you can relate too.
It was our HR that suggested I resign slow down and have more family time. Rather than go long term sick. That was mainly because they hadn't heard of PMR before. They then gave an OH assessment with a Doctor in Leeds about 50 miles away. I can't walk (Hip another issue) or use public transport. The two conditions together complicated matters. Sorted now but it's still a delicate issue. I am looking at joints group near me and talking to someone in Ikley for when I can drive again.
The subscription is presumably to become a member of the PMRGCAUK charity.
What is the subscription I read on your introduction? Do I click on the link and get info from there?
Hi EstelleMac - welcome. Sorry you have this disease. You will get great help and advice here.
Hi DorsetLady - interested to read that GCA is mostly in neck and should
Hi Slosh,
This is description of GCA from NHS, UK.
Introduction
Giant cell arteritis (GCA) is a condition in which medium and large arteries, usually in the head and neck, become inflamed.
It's sometimes called temporal arteritis because the arteries around the temples are usually affected.
The condition is one of the most common types of inflammation of the arteries and veins (vasculitis).
Were you not aware of this before?
No DorsetLady. So PMR / GCA is a form of vasculitis?
I wonder if I should email my Rhuemy. I think I did mention it to him at my last visit though.
Don't know that I agree with the comment "it's one of the most common types" - there's an awful lot of people in the NHS who don't know about it!
Hi, its been a while since I've commented on this sight and it's because I'm one of the ones not wanting to give in to this illness. Your blog has opened up a new door for me. I've been off Prednisone 2 wks 2days as of today. I'm not back to normal because every morning I wake up with pain mostly my shoulders, one side a lot worse than the other, and at times a stiff lower neck. I try not to take anything but to often I find myself taking ibuprofen about 600 mil every 24 hrs because it helps so much. Then I go on with my day. Seems like everything has side affects. But as for ME I'm so afraid of Prednisone. Has anyone tried cannabis, just yesterday I read that it helped with inflammation and pain and that there are no side effects. I know nothing put I'm like a sponge trying to find something other then Prednisone. I had blood work done yesterday and will have bone scan next week, then will see my Rumatologist in September who was the head Rumatologist at Loma Linda University in California US. For now she said to continue with my 600 ibuprofen every 24 hrs. Again loved the information you gave and I continue reading Healthunlocked every day, and pray that something wonderful comes along for people diagnosed with PMR/GCA . God's speed. Boomer/Rose
I read about Cannabis Oil as a treatment for PMR. It is supposed to be very good. Doesn't have the hallucinogenic content so deemed safe and not addictive. It is legal in California but not UK. Don't think it's something I would consider without medical support.
Thank you for responding !
Hi hope you dont mind me chipping in ,you can buy cbd from holland an barrett in the uk and on line its without the thc content so legal and i find it really helps
Hi Estelle, I am sorry you have PMR. Good luck with educating your doctor, I hope you have success.
Need to give the Doctor Kathryn Gilbert book or show him how to use Dr Google. He is a work in progressive shall we say??
Hi - and welcome!
Hello and welcome from a fellow off sick from work for a very long time person. They're a great bunch here.
Hi Estellemac, and welcome to the group. It is really like having your hand held by kind intelligent friends. It has enabled me to appear much more self reliant to friends and family and not a complete symptom bore which I was before diagnosis. I was actually quite scared. Not now.
Welcome. This is a good place to find strategies and fortitude.
It is a long haul for many of us. That is what comes home to me. Also, I realize that at 14 mgs Pred six months after PMR diagnosis I'm still in some sort of honeymoon period. Still enough Pred to keep me going without much fatigue and still short of an accumulated total dosage of Pred to have caused too much internal damage (I hope). But the signs are there that those days are ahead of me: lots of hair loss, some muscle loss, and It takes a bit longer for me to adjust to a taper enough to know what I'm feeling is from the taper and not the beginning of a flair. Yup a long haul.
Hi estellemac
I also like you have realised what an effect this can have on life and family and I for one doing the work i do in being a close protection officer find it very difficult having always been very active.I now feel like a snail compared to my colleagues.
I was diagnosed January 2017 and was off work for 4 months but was very ill leading up to it but just kept pushing myself through the pain till I could take no more but sinceI've been taking the Pred medication I have now returned to work and taking things a little steadier but still not 100%.
Hi bigg8, I suppose those of us who have been very active in the past are hit hardest. If we had been couch potatoes it probably would not make such a difference to our lives. We do have to train our minds that PMR is life changing and give in to its idiosyncrasies! Easier said than done of course!
My job was working with homeless young people in a supported housing scheme. I kept on pushing through the pain. Can't slow down always there for everyone. Not had a days sick on 9 years. Then my hip gave way with Osteoarthritis. Full hip replacement needed now. That was the wake up call to look after me get well and start over. I have so much time to reflect on what's important in life. More so everyone CAN cope without me very well indeed. My husband is still in training looking after me but he has adapted better than me!!!
You will find all replies very helpful..It gives me confidence to know that my symptoms are " normal" and that they are all part of PMR .I was diagosed in March and from being an incredibly active positive 77 year old I realise that my only option is to accept that for the time being I have to listen to my body and yes ! Give in from time to time .My symptoms include extreme feelings of weakness , so that when out and about I sometimes feel that my blood sugar is low, however this is probably more to do with the disease itself as I have been tested for diabetes .
Also watch you don't bump into things or fall over as the skin becomes thin and bruises take a very long time to go away .
One difficulty is that people just don't understand the disease and keep asking if I am better ..but as mentioned in another post it is not a case of take a pill and in a few days you will be cured . We are in for the long haul.
Keep your chin up!
Tiny-tim
Accepting I am less active was the worst part. But I am getting much better at it. Thanks for your response x
Hi and Welcome
This is a great site for information...I was diagnosed in March this year and still finding my way. Good Luck
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