Just diagnosed with GCA and PMR. Just turned 54. Really appreciate your site

Hi,

I was just diagnosed with GCA and PMR and was totally shocked as i never heard of this disease before. In early January I couldn't vacuum the floors, soon I couldn't walk up steps. My GP was baffled. I am only 54. I advocated for myself and got an appt with a rheumatologist as both my aunts suffered from RA. Three months later I saw the rheumatologist and she diagnosed me immediately and sent me immediately to the surgeon within 2 hours. They both clinically agreed. I declined the biopsy as I had recent jaw surgery which was horrific. After RA week on steroids I can lay my head on a pillow and walk up the stairs without the rails. It is life changing.

Next weeks I start methotrexate and am hopeful for a quick remission. The rheumatologist is optimistic yet cautions relapse is common especially with GCA and PMR.

I would appreciate any insights, advice, etc. I am thankful for all you who have posted your situations and advice. Keep it up. We newbies greatly appreciate not being alone.

10 Replies

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  • Correction. After RA week should be after a week.

  • Hello and welcome ( to the club nobody wanted to join). What dose of steroids are you on?

    Well done for taking the bull by the horns and preventing further damage from the inflammation! It sounds like you are in good hands with your medics. Continue to let us know how you progress. This is quite a journey! The support on here is amazing.

    Poor you with your jaw surgery experience.what was the operation for? Is it unconnected with your GCA and PMR diagnosis?

  • This is what I send to newcomers, hope it will help.

    It's what I've gleaned from my own 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, and take your time to read other sites etc. Too much to take in all at once.

    Apologies if I'm repeating what you already know.

    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/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, 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 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) it does not cure the problem, but it keeps it under control. They come is 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 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 (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 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 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 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 - mainly from UK, but also many from around the world, so you should get a response anytime.

  • Hello Tj2017 and welcome. So not nice being a newbie to all this but at least having found this site, you can be assured of a mountain of friendly support along the way.

    It sounds as though you have had a great response to the steroid starting dose with regard to both your PMR and GCA symptoms - although you haven't mentioned what that starting dose was, I assume somewhere in the region of 40-60mgs daily?

    I wasn't prescribed MTX but it does seem as though a few more medics are prescribing it in the very early days following diagnosis than used to be the case. In the past, MTX was only occasionally considered when a patient was having repeat relapses and continued difficulty reducing down from the high doses. Some find it more helpful than others and I hope you will be one of the lucky ones in that respect.

    Although your rheumy is right to advise caution adding that "relapse is common", it has been found that those who follow advice to reduce down through the steroid doses slowly and in small decrements are generally less likely to relapse. Really, being "hopeful for a quick remission" is something we all dream of but the fact is that both PMR and GCA go into remission when they want to and, unfortunately, not when we want them to. The steroids are not curing anything, they are just damping down the inflammation to relieve the pain and stiffness whilst the disease takes it course, and that can take anything from two years upwards. So slowly slowly is our mantra to avoid flares along the way.

    I do hope you continue as successfully as you have begun but do give yourself lots of TLC especially in these early days following diagnosis. Learning how to pace ourselves when we have been used to flying around in all directions is probably one of the hardest lessons that we have to learn. Take care!

  • Rheumatologists are often optimistic - but I'm afraid there is no way to forecast which of the various apparent groups of PMR/GCA patients you will be in. There is also no real evidence that methotrexate makes a significant difference in the overall picture although it does seem to achieve a lower quantity of pred being required over a couple of years and a bit less residual inflammation - but there is no significant difference in the rate of pred-related side effects.

    ncbi.nlm.nih.gov/pubmed/185...

    Someone has posted today about being disappointed at not getting off pred in 2 years - something like 25% of patients are able to stop pred in that amount of time! The above paper found about a third of patients still need pred after 6 years. And when it doesn't work - YOU didn't "fail" in any shape or form. PMR and GCA are the bosses here, whether you like it or not, and the best thing you can do is learn to live in the same house as the gorilla:

    batsgirl.blogspot.it/2008/0...

    while administering your spoons thoughtfully:

    butyoudontlooksick.com/arti...

    And thank you again to DorsetLady for her magnificent summary :-)

  • 🙈

  • Hi. Thank you everyone for your thoughtful post. I am 80 mg of prednisone as I have a lingering headache on my right side. Both temperol arteries were enlarged, especially the right. I drop to 60 tomorrow and than see the doctor and ophthalmologist on Monday. The advice provided is well treasured, especially taking it easy. I try to get things done and just end up not being able to keep my eyes open. I first thought the prednisone would get me to be symptom free. I was hopeful yet not realistic. I feel tremendously better yet still have symptoms that pop up. At one time it might be my hips and other times I get sharp pains in my shoulders. It sounds from your post that this is normal. Right? Over time the symptoms will continue to disappear?

    I am in the US and seeing the docs at Stanford Medical. I am very fortunate to have good care close to home. 🌞

  • From personal experience (also started at 80mg) the majority of your pains should be masked by Pred at that level, but not necessarily 100% painfree.

    You do have to help yourself though, the inflammation may be controlled, but you still have the underlying illness, and your muscles are not as resilient as they were previously, and you are likely to suffer from fatigue.. If you do too much one day because you feel good, then probably you will pay for it the next day. You have to learn to pace yourself, and don't be embarrassed or feel guilty if you need to ask for help. I

    The symptoms don't disappear as such until the GCA/PMR goes into remission, but they are controlled so long as you are taking enough Pred to do that.

  • Good. Ask for optical coherence tomography scan OCT from your ophthalmologist - the level of resolution of images of the blood vessels is awesome.

  • Thanks. Great news!

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