I found this site yesterday, directly after my GP had confirmed what she thought my issue was. I am actually having my blood tests today but there is no doubt that I have PMR.
As you wil all know, it all started with walking up feeling like I'd been hit by a train...legs that felt like they'd run a marathon and arms that felt like they had done 8 hours lifting weights. I was (am) also suffering from a trapped nerve in my neck so my first thought was that something was radiating. I am very active by nature and run most days, walk my dog, swim etc but found that, even after my mobility had 'kicked in' walking was quite uncomfortable.
I can't say I'm not frightened by what lies ahead - I feel poleaxed at the moment - but am optimistic by nature and will hope for some help from you all that may offer me something positive.
I'm very glad Ive found the forum and will be back to it daily.
My background - aged 56, retired early at 55 from the world of insurance and I'm sure this is my body's way of slowing me down. I've been going at 100mph ever since I finished work.
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DebbieF1603
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Please find a few words (!) I have taken sending to newbies, hopefully it might help a bit, but sure once you read through it and seen GP you will have plenty more questions, so please feel free to ask!
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, 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 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 and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff muscles and fatigue.
In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it's usually just the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. Serious sight problems can arise if the temporal artery is affected and causes problems with 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) it does not cure the problem, but it keeps it under control.
Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes a lot longer.
The initial high dose (PMR,15-20mg, GCA,40-80mg) takes control of things, 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. It's a balancing act, you don't want to take too much Pred, but you need to ensure you are taking enough.
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. 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
Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am, so some people take their Pred around 2am so that by the time it is fully in their system (about hour or two) 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. 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 Rheumatology 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, (Butyoudontlookill.com) it's not about PMR but 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, 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 pre PMR, 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.
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
Hello Debbie and welcome to the Forum. It is useful, informative warm and friendly, full of great people, sometimes it's a lifeline.
I hope your journey is a gentle one. You cannot be the busy bee you once were. It is key to really pace yourself with activities and jobs. You will also have a love /hate relationship with the Prednisalone that you will be prescribed. I hope you got the " new woman miracle" when you first took it. It's all we have at present and it's vital to get the inflammation down.
Time to stop and stare now and wake up and smell the roses. Look forward to reading your future posts. Take care! 🌹
You'll get much support here and knowledge as you have found already from DorsetLady. I am only two weeks into this game and most likely only (!?) have GCA. I'm 54 and also a member of the 100 miles an hour club. Now facing the task of reworking life and perhaps giving up my career.
The one thing that I hear again and again on this site is that one has to have patience, no sorry, PATIENCE! I'm not shouting, just emphasising. An open mind is also a good attribute to develop. This is a long haul thing and a rush to get back to normal, especially regards Prednisolone, seems to derail the train in many people. Pred your new friend with which many have a love/hate relationship. You can become a Pred bore on here without reproach 😉.
Inform yourself as much as possible in order to make choices as there are many which may not be apparent at the outset when dealing with the medical profession.
Thank you all and particular DorsetLady for a very informative post. The slowing-down thing is going to be so hard. I look at my diary now and wonder what can 'give' but I guess that circumstances will start to prevail. I will start reading the suggested material. Thanks again.
As your just new to this affliction, and no one else has seemed to suggest it, I recommend you get yourself a copy of Kate Gilbert's book Polymyalgia and Giant Cell Arteritis: a survival guide. You can get it on Amazon.
Also Living with PMR & GCA, which is available from pmr-gca-northeast.org.uk.
Both are full of very helpful information, and will surely help you, at this early stage, to get a better understanding of what's going on!.
Meanwhile, I'm sure that, like me, you will find this forum brings a wealth of understanding and empathy to those of suffering from PMR or GCA.
Welcome Debbie, I am not long with this group myself but consider it a very special support and ( dare I say it) friends network.
Although the symptoms and treatment plan of each PMR sufferer seem to differ in every individual, there is such a depth of knowledge and experience on this forum that I always feel confident that someone will have a helpful answer and I will feel less lonely, isolated and scared as I come to terms with this life changing illness.
Hi Debbie and welcome to the site. You've heard from some lovely folks on here already, but I just wanted to add that I wished I'd known about this site when I was first diagnosed with PMR in Aug 2010. I'm akso a 100mile an hour person, and although I slowed down, I didn't slow down enough or listen to my body all the time... consequently I'm sure I then went on to develop GCA in 2013. I don't wish to alarm you, but if I could do it all again, I would certainly slow down and not do as much as I did. The spoon theory is a good one to remember.
Wish you all the best with your illness, and perhaps use the word apprehensive rather than frightened... be informed, stay positive and use this site, it's very friendly and helpful.
Hello Debbie, I also found this site immediately after coming home from my GP surgery fresh with diagnosis - and thank goodness I did. I don't often post, but I read every day and find so much helpful info and comfort from the feeling that others understand and have experienced the same journey.
I certainly found in the early months that I had to spend time and energy just getting my head around all the things I needed to consider, to make my path as smooth as possible. One thing I learnt was to take heed of what my body was telling me, and not be pushed/encouraged/ coerced into reducing the pred too quickly. As a result, I'm now a DEAD DEAD SLOWER! Probably on balance a bit too careful, but for me it's so important to keep going in the right direction.
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