Just a hello from me- I was just DX- with PMR last month. I am on prednisone and just started Methotrexate 2 weeks ago. I am just learning about this condition, the meds, and how to manage with this new "normal". Thanks for adding me to your group. I am from the US.
Hello from a new member : Just a hello from me- I... - PMRGCAuk
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•
DorsetLadyPMRGCAuk volunteer
Hi EllieBee1'
You might find following useful
This is what I send to newcomers, hope it will help. There's a lot of information to digest, so you may need to read it through a couple of times, 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, 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, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff and 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'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 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) it does not cure the problem, but it keeps it under control. 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 a lot longer. You have to tell yourself this is a long term illness, and accept that - it does you little good to say 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 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 for you. 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 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 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, (Butyoudontlooksick.com) it's not about PMR 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 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.
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
• in reply toDorsetLady
Thanks so much for your very informative reply! So much information to digest! Yes- I am definitely in the slow lane- but as I am beginning to feel better- I find that I have to try to stop myself from doing too much! Today I finally washed my floors- boy you would have thought that I ran a marathon! Haha- drenched in sweat and beat! It's all so new and lots to learn!! Thanks again!!
FLOORS? I did the 3 square metres in front of the kitchen block - that was quite enough for me! Took 2 days to recover from getting the vacuum out!!!!
• in reply toPMRpro
Haha!! It was so crazy of me to do it- But it really needed to be done! I am resting now and crossing fingers that I don't have a flare or something! Floors look nice and my heart is happy😊
tgca• in reply to
The other day I washed A floor (singular) and was knackered afterwards... conscience versus listening to the body? Tough one!!
katkawon• in reply to
Yay for you. 😊
I understand it is the ophthalmic artery and its branches that may become occluded in GCA, thereby causing blindness, and the ophthalmic is a branch of the internal carotid.. The superficial temporal artery is a branch of the external carotid.
That's true.
Most non medical people, which is the majority on here, may not know about the internal and external carotid, but they probably are aware of the temporal artery. That's what patients notice as it's easily seen and felt if enlarged, and where a sample is taken from in a TAB.
I am not medically trained, and hope I've never given the impression I am, but I try and give a layman's overview of what patients may or may not get. I will amend my introductory piece to read ophthalmic artery. At the beginning too much detailed medical information may be not what everybody wants. If they do, then there are others more qualified than me to supply that information, or it can be found on various sites (Wikipedia and the like).
I was diagnosed with Temporal Arteritis after losing sight in right eye and undiagnosed for 18 months, so all I'm trying to do is stop others suffering the same fate, and if my terminology is not 100% correct then so be it - hopefully I still get the message across.
• in reply toDorsetLady
So sorry to hear of the loss of sight!! What a journey you have been on. I think you do a great job with the way you educate and share information on this crazy disease! Keep it up- it empowers people to know more and get the care they need!! (I am a nurse and your info is right on! 😊)
Thank you, comments much appreciated. Take care.
Your summary is very good and helpful, especially for anyone new to PMR and GCA. My wife had no temporal artery problems initially, it was occipital, so although the temporal artery is the most common to give symptoms, any new pains in the head may be due to arteritis if associated with an artery. You are doing a great job, keep up the good work.
Yes thanks. Fully aware of other pains, been there, done it, got the t-shirt -unfortunately.
It's difficult to know how much info to give new patients, try to give salient points without overwhelming them. But always open to any comments/corrections. As we're always saying, everybody seems to have similar, but differing symptoms.
Hello and welcome, EllieBee1. I hope you have a smooth journey down this often bumpy road. We are here to help if needed.
Greetings EllieBee1
Welcome to the exclusive club that none of us ever wanted to join (or probably even knew about before getting PMR)!
Yes, getting used to the new 'normal' is very appropriate - and quite a learning curve. Just to say you're in very good company here with a goldmine of reliable expertise and support at your fingertips (as I know from experience).
My humble 'role' here is just to try to bring a few smiles in between the tough bits (I emphasise, try...) 
Try to keep smiling on the Journey..
MB 
• in reply tomarkbenjamin57
You bet MB! Smiling is an important part of whour we are- I lost my smile for a while- but I think it is slowly returning! 😊
markbenjamin57• in reply to
That's good to know - and we're all here to help in the process!
In my books, Smiles and Laughter can be a very powerful 'medicine' - even if not proved scientifically. Sometimes, science can take a back-seat to the power of a Giggle or two...?
As I write this, I'm preparing to get back to hiding behind the sofa in case the experts here shout me down. I know my place in these things...
MB
You seem to spend a lot of time there MB - hope you have made it comfortable...
Yes PMRpro - just me, teddy and my vast collection of charity shop 'trophies' 
Wouldn't it have been tidier not to throw them out of your pram in the first place?
Though I fully understand that now there is enough room for you as well...
Not my fault, you made me! (whimpering, clutching teddy anxiously..) 
What a shame there is no LAUGH button on here
Just wondering why you are also on methotrexate?
• in reply toHeronNS
My rheumy- says that it helps get the prednisone down
HeronNS• in reply to
Okay. I just wondered because it seems like you haven't been on pred long enough to be wanting to get it down just yet if you were only diagnosed a month ago. I'm down to 2mg, reducing soon I hope to 1.5, and didn't need additional medication. Hope you are feeling good right now! Cheers!
There are some doctors who believe it should be used early - but I don't know if there are any real studies comparing it. The recommendations say it should be considered early for patients who are at greater risk, obviously diabetics and so on come under that, but they also say about patients who can be expected to have more difficult patient journey. Their sign for that was patients with high blood markers. In my experience the ones who are going to have long journeys tend to have low markers!!!
• in reply toPMRpro
Hmm not sure whyou he went to the methotrexate so quickly- I was on a high dose and was not very successful in decreasing.. maybe that's why - but I do think that it has has helped with the taper.
Okay, PMRpro, didn't know that. I had assumed it was only used when people were not able to taper as a possible help to them, and that's after being on pred for months! Thanks.
• in reply toHeronNS
Yea- I think it was kind of quick- but I hope it will turn out to be benificial !
HeronNS• in reply to
Yes, I hope it will be. What dose did you start on? And how long were you allowed to stay at the first dose before coming down, and how big were the steps? Sorry, I don't mean to be nosy, but we're all so different and it's always interesting to learn of new methods.
• in reply toHeronNS
Ok- my local doc started me on 60mg of prednisone for 5 days, then 40mg for 3 days. Unbelievably - I was able to see my the unusual the week after I b was diagnosed! He wanted me to try stopping the prednisone - that lasted 1 day- and I was in excruciating pain! Then he put me on like a protocol - 30mg for 2 weeks, then 20mf, then 10mg. Since I was not able to get down to 30mg- that's when new put me on the methothexate- 20mg. Once a week.
Im.supposed to go down to 10mg this week- I am a little worried that may be too qiuck... we'll see..
What a strange approach for PMR - never come across that before. I hope you manage to get to 10mg - but they are being very hard on your body. Good luck.
HeronNS• in reply to
Elliebee, that is interesting. I wish you well. Please keep in touch!
Lee1945• in reply to
My Consultant advises reductions of only 1 mg per month and I have not noticed any change so coped very well with that. Now waiting to see him about reducing to 1/2mg. My main problem is getting to see him!
Could it be because Methotrexate takes quite a long time to start working? Sometimes more than three months, as far as I remember from when I worked as a reg. nurse at a rheumatology department.
• in reply toBittebitt
Interesting - I was wondering about that. Thanks
It takes a long time to work in RA but when it is used as a so-called steroid sparer it should start to have some effect on the metabolism of pred fairly quickly - it is a totally different concept, it isn't being used as a DMARD. Though they DO say it takes up to a year to see the difference in the total dose or reduced number of flares when reducing. Which is what makes me think that if you go about reducing in a more sensible manner you might not need it! And to be honest - that is the impression gained from the people who have used DSNS and haven't had a flare ...
Welcome Ellie. Your in good company here. I joined last Sept. Scared confused and no knowledge of what was happening to me or why. Feel free to ask any question, even if you are not sure it's due to PMR. There will be someone here to say that happened to me or to reassure that your still normal. There are also the funny guys AKA Markbenjamin57 😏 to name one of a few. Whom never shys from keeping us amused. (THANK GOODNESS) It's a long road to walk but for me, finding this site was a step in the right direction. Good luck on your journey . Chrissy
Ha, Chrissy / all following this thread.
'Funny Guy(s)'?!! Hummph - I'm the ONLY Funny Guy around here, and NO MISTAKE!!! 
(only joking..).
But seriously (unusual for me, I know), sharing some fun and gentle humour is a great way to build bridges between strangers - and hopefully to get through the tough bits of PMR / GCA as well.
If I can raise some Smiles here, that's my best 'work' done as a contributor to this community. When and if any of 'you-lot' respond positively, that in-turn feeds me in more ways than you might ever imagine.
Sincere thanks, and try to keep smiling on the Journey...
MB
• in reply tomarkbenjamin57
Did you say you have written a book? What is the title??
markbenjamin57• in reply to
Ohhh, Ellie...!!
Ok, so here goes.
In between the misery of suffering from PMR, I've somehow found it in myself to write a few 'witty' (I say this advisedly) posts here on 'The Lighter Side' of PMR / GCA whilst struggling with the condition for myself.
The up-shot of all of ths is that with the relentless (but very gratefully received) encouragement from the more 'Bonkers' amongst you here, I realised that my numerous ramblings can now bear fruit.
The book will be entitled: 'Write Me Funny - The Lighter Side of Polymyalgia and Giant Cell Arteritis'. It's almost ready to self-publish, and I just need to get my 'Brain-Fogged' head around how to get it 'out there' - not for vanity purposes, but to fulfil a life-long ambition to write 'stuff' that will make people smile.
MB
• in reply tomarkbenjamin57
Mark- that is so cool!! Yes I will check out your blogs and I will be one of your encouragers!
I play ukulele (self taught). With the polymyalgia- I had to drop it- but I am beginning to pick it up again.
I love music and the uke is such a happy instrument- and I love sharing it and blessing others! Keep us posted on the book - it will happen when it's supposed to! 😊
markbenjamin57• in reply to
Ah, thanks Ellie! Keep playing!
PMRproAmbassador
Hi and welcome! Nothing to add to Dorset Lady's superb summary!!
• in reply toPMRpro
It was really fantastic wasn't it!! I think I will try to save it so I can share it with others, and to friends / family!
Hi EllieBee & Welcome 💐
I'm on Methotrexate for the second time & currently on 6.5mg Prednisolone, there is a wealth of knowledge on this forum & always someone who can help or just make you feel you are not alone.
Best Wishes
Mrs N x
Welcome. I am from Illinois. This is a wonderful place to ask questions. Health professionals will leave you very much on your own to manage.
I am from the US also Michigan. How is your pain level on this medication? I was weaned off of prednisone my pain at this time is a 3. Hope it doesn't rise to a 10 like last summer or I may have to go back on. Fingers crossed. Good luck to you. Lots of great info on this site. 😊
I'm in the US too. Did your doctor say why he started you on the Methotrexate right away? It's not a typical treatment to start you on the Methotrexate right away. They usually let you start out on Prednisone alone and introduce the Methotrexate if you have problems tapering. But I guess that's not how you're Dr saw it. What dosage of Prednisone did he start you on?
Welcome - unfortunate that we meet this way. This site is great for helping you to plough your way through this minefield. we are all with you and understand what you are dealing with. Good luck xxx
• in reply to1602
Thank you- same to you!
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