Journey begins with polymyalgia Rheumatica

I am posting for the first time. After the doctor thought I was having back problems and was sent to have an MRI and then to a back surgeon. He wanted to try physical therapy. I did that for 14 sessions. Then I went in for a yearly physical and the doctor could see I was in bad shape and was diagnosed with PMR. I was put on 20 mg of prednisone on April 26th. My pain is much better but today I have developed swelling on both sides lower part of my neck. I know they said one might get swelling on face and upper back. Has anyone else had this and is it something I should have checked out? My next appt. is June 7th and I know they want to reduce my meds. Anytime I try to do much work some of the pain comes back. I try to take naps.

Is walking good for you or am I just asking for more pain?

Is there a print out explaining PMR that I could give to family members?

Thank goodness for this site. I have been learning so much from everyone.

16 Replies

oldestnewest
  • I'm sorry you have this unfortunate diagnosis. It's a bit concerning that your pain returns so quickly with activity. There may indeed be something else going on besides the PMR, but the experts will be along to explain more about that. Gentle exercise is good for you. If you are used to long walks you may do better having a few short ones instead. Be sure to get lots of rest, more than you would perhaps think reasonable, as your body needs time to heal. Pred isn't healing anything, just handling the symptoms so you can function. PMR will go into remission in its own good time.

    This may help your family understand the disease:

    patient.info/health/polymya...

    But what may help even more is this:

    butyoudontlooksick.com/arti...

    or this:

    batsgirl.blogspot.ca/2008/0...

  • Thanks HeronHS. Really enjoyed the articles. I'll think of the Gorilla often.

  • Hello Joanelaine,

    After being on prednisone for a month I developed fat deposits around the collar of my neck. My rhuemy said this is a side effect from the prednisone. This may be what you see as swelling. It is always best to call the doctors just in case. Are you in pain? I am not in pain from the swelling on my neck.

    TJ

  • Thanks for sharing. I figured it was from the prednisone. I had worked in the garden the day before and guess I can't do that anymore. Had a bad day after that.

  • Do less and break it up into bite-sized chunks with a rest on the garden chair in between. And find a person to help with the heavier stuff, just supervise and pretty much anyone will do.

  • Thanks I'll give that a try. I hate to give everything up. Just planted a very small garden this year Only three rows and two tomato plants.

  • Great suggestion PMRpro...as always! I need to follow it myself...thanx for the reminder.

    Suzanne

  • Hi JoanElaine,

    Welcome, think HeronNS has covered most things, but see below something I send to new patients- it may help you and your family to understand a little better.

    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.

    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 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 affemcts 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 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 obviously don't want to take too much Pred, but you need to ensure you are taking enough.

    When you collect your fist 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. 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 one 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 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.

    Take care.

  • Thanks for all the information. It has been so much to take in and to accept. Hard to slow down when you are having a good day. Then you find out the next day you did too much.

  • Keep a diary - then you can have a look and see what it was you did that wasn't such a good idea after all! And how dose affects how you are/what you can do.

  • Thanks what a good idea. For I find my memory sometimes doesn't work all that good. Seems I am fuzzy at times.

  • The NE charity sends a booklet about PMR and GCA and its effects to their members and it is available to purchase here:

    pmr-gca-northeast.org.uk/ (under Support Us/Our little shop)

    and there are also stories on the site from various patients about their journeys.

    The paper mentioned here is also very helpful for portraying how PMR affects us:

    healthunlocked.com/pmrgcauk...

    as it has quotes from patients which are easy to read and say it all really.

    But talk about hearing hoofbeats and thinking zebras!!! At least your back surgeon wanted to avoid surgery - something to keep as a last resort more often than not!

    Walking is good - just start with a short walk first (10 mins or so and not up a mountain) and build up the amount you do slowly with a day off in between so you know what you did yesterday is not too much and making you tired. I could manage far more if I did say 20 mins and had a rest and did another 20 mins - walk to a park bench or cafe where you can stop and rest for a while - and then walk home.

    It really is time to start to reduce your dose - so see what they suggest. Slower is better than faster as I'm sure you have already gathered!

  • Thanks for the info. Just so much to digest. I will keep reading and thank goodness for all of you folks that take time to share.

  • You've had some marvelous responses.

    Thought I'd pipe in only to say that I not only had a balloon face within about 6 weeks of starting prednisone, I gained 2 inches around my neck within a short time after. Mind you, that was at a starting dose of 40 mg. It wasn't until I got down to about 12 mg that the winkles began returning to my face (Yeah!) and I could begin wearing some of the necklaces that I had to abandon when I had my thick neck.

  • What a great group to get so many responses. It has been a lot to digest. Thanks for sharing.

  • I am concerned about you saying that today you've developed swelling on your neck. The way you said it makes it sound like it happened very quickly like in one day. If that is the case then I am concerned and I think you need to go see the doctor. Prednisone will give you chipmunk cheeks but it happens over the course of time it does not make your neck swell. So if this is something that has made your neck swell and it has happened over a quick period of time, say over the course of a day or two please go see your doctor.

You may also like...