Hi, just new to this forum and sio far from what I have read through I am glad I found this site. I am 64 and just new to PMR, diagnosed in October. We have a huge doctor shortage where I live so being as stubborn as I am, I waited until I could not basically move to get the pain checked out. Went to emergency, and luckily had a Doc who knew exactly what I had symptom wise. Blood test done, yup..PMR. Prescribed me three weeks of Prednisone,,5 mg dose..three times a day first week, then twice a day for a week then once a week.Well that took me into the timeline a week before Xmas, and trying to find a Doctor here is impossible. I am serious. My town of over 100,000 people cannot find a doctor. Covid closed all the walk in clinics, practices closed all over.i have been taking Tylenol Extra Strength,,Advil mini gels, Tylenol Arthritis and high strength CBD oil. Super fun.My pain tolerance is high, so this really frustrates me and disables me daily.I am going to see a Doc up island where they have a walk in appt clinic so I can get rechecked to see where I am in this mess.In the meantime how do you all find a comfy sleeping position? I get maybe three hours a night and it is not helping with the already stressed out body and mind. ALso. how have you tried to explain the actual pain to those who think its just like a pulled muscle and will go away quick. I m like another poster had the delightful attempts at trying to get off a chair,,out of bed or off the toilet, something I never would have thought I would have an issue with at 64. Appreciate any replies just to know that someone knows what I am trying to get across.I wish you all well in this cursed journey, and hope you all find some comfort to be painfree.
Regarding PMR and trial and error tips from meds ... - PMRGCAuk
Regarding PMR and trial and error tips from meds to sleep.
More experienced people will be along to comment soon. In the meantime I recognise all your symptoms including the horrible inability to stand up from the loo. I also tried to fight it out for as long as possible in the middle of a Covid crisis. How well did your various doses cope with the pain and inability? Awful if they helped but now you have nothing. Hope you can see a doctor again soon. Have you tried putting a pillow under your legs in bed? That made me a bit more comfortable.
There will be a number of replies to you later Vortex, when people in Europe wake up.First, however, welcome to the forum.💐💥 Read as many posts as you can - pop on the photo (avatar) at the top of each post and you will read that ' we have all been' where you are at the moment. Take your time! Question as much as you like.
Regards from Constance
Thanks, it is super helpful
Welcome here
The experts will be along very soon but basically, if your doctor knew what you had then he should have realised you were in for the long haul, not a quick 3 week fix
So you need to download any of the information sheets, doesn’t matter what country they are basically the same, and show them that
End of the day, you need to be on a once daily (mornings usually) dose of 15-20 gms of prednisone and follow a tapering regime for how ever long it takes for this wonderful condition to do one and leave you - this can be any amount of time but expect around 2 years
Neatly summarised!
Sadly the Doc was an Emergency Doc only, no practice.He did try to be pro active and get me into see a Family Doc to no avail.
Hello and welcome. Just a few pointers before the more experienced people come along.
PMR is a chronic systemic illness.... an autoimmune disease that requires steroids to reduce the inflammation in the body that's causing the pain and immobility.
Steroids don't cure PMR, they simply reduce the inflammation, so if the dose isn't high enough to effectively do that, then it needs to be increased.
Some people experience almost total relief when on the correct dose and others only about 70% relief, but you shouldn't still be in the amount of pain and discomfort that you say you're experiencing.
Many medical practitioners will advise that PMR will take about 2yrs to run it's course...... in over 90% of patients it does seem to eventually diminish and disappear, however, the time span is much closers to 5-7yrs, but obviously will vary from person to person.
Read the FAQ's....lots of help and info there.
Hi and welcome -
Sorry to hear about your issues - pity the doctor who diagnosed your PMR didn't have the confidence to set you up with a proper plan rather than just 3 weeks on Pred. Or maybe because it was emergency clinic so not authorised ?
Many of us have been left to fend for ourselves at the beginning, not necessarily through lack of doctors, but lack of awareness of our illnesses so know that ordinary painkillers do almost nothing for the pain.
Have a look at this post for your Info -
healthunlocked.com/pmrgcauk...
This may help on sleep - healthunlocked.com/pmrgcauk...
Might like to have a read if this as well -
practicalpainmanagement.com...
Please keep in touch, and hope you get to see a doctor soon
Thanks. Yes, Emerg Doc only so could only prescribe within the realms of the hospital.I wish he had a family practice, I am not sure alot of Dr.s deal with this,
There certainly are a lot of doctors (whatever country you live in) who seem to have scant knowledge of PMR (or GCA), so a pity he doesn’t have a practice. Still now you what it is, hopefully you can find another doctor and get proper treatment.Please keep in touch.
Welcome.Your story will be familiar with a great many others who have had a diagnosis which has not been followed up with correct management.
I recognise and have experienced your symptoms and my heart goes out to you. It seems that the doctor who prescribed the 15mg Pred daily was unaware that the initial dose should have continued for 4-6 weeks and only reduced when your pain and the inflammation had reduced sufficiently to allow you move comfortably. Thereafter, any reduction should be no more than 10% of the previous dose and only when you are at least 70% pain free.
Tapering plans can be found if you search in the 'Topics' and 'Related Posts' sections but as others have said the experts will explain in detail.
As far as sleeping is concerned, I personally found that a mattress topper eased the feeling of lying on pebbles. As I couldn't turn over I found that lying on my back was the only position I could bear even though I am a side-sleeper. This was before diagnosis and within a week of beginning Pred I could manoeuvre my body and get in and out of bed without help.
You need a pillow that has a low loft so that your neck is in alignment with your spine.
You have my utmost sympathy with the doctor situation in your area and it seems that you may well have a difficult task in finding one who is knowledgable enough to manage your PMR. However, you mustn't give up and should arm yourself with all the information passed on by our experts who have helped large numbers of fellow sufferers and use it to 'educate' your medic.
Please, keep coming back and ask anything.
If the doctor you saw recognised PMR - how come he also didn't know it is a chronic condition that is not cured by a 3-week course which would normally only be used as a confirmation of the diagnosis?
I had PMR without pred for 5 years - I hear your pain. Try extra warmth - an electric overblanket might help. Stretching in a warm shower also helps get moving, and once you get moving it does improve through the day a bit. You are probably wasting your time with the pain killers - my best part of the day was in the evening after a glass of wine!
Thank you. The Doc did know the issue and time frame, but it is the getting to see any doctor who is in a clinic that is the problem.I live on Vancouver Island B.C. Canada, and the doctor shortage is horrendous.I am going up island to the only clinic that is taking appts for visit so I can actually speak to a doctor and get this happening ASAP.
If the pred helped that is a pretty good confirmation, but when you do finally get to see a doctor they should run a few tests to make sure it's nothing else. Really just the routine blood tests which will show if anything else needs to be followed up. Then you get set up with a decent amount of pred, 5 mg and 1 mg, and some guidance how to taper. Generally you would be on a starting dose of 15 mg for at least a month before attempting any taper, and the taper would, as you know, be very slow. That's where the forum helps. I live on the other side of Canada and we have the same doctor shortage. it really is a disgrace our country was allowed to get into this situation. Here our medical school cut back on the doctors they were training, because the premier at the time - a physician himself! - felt we had enough doctors - just in time to add to the problem of growing shortage as the boomer aged doctors started retiring in droves!
Sympathies! I'm the same age as you, and at the beginning was frequently stuck on the loo, in the bath, in the car...Mattress toppers can be great, but when you get back on steroids you may well get hot flushes at night, so probably better not to get a memory foam one - they can parboil you! Wheat bags are also good for warmth on the sorest spots. Getter up out of a rocking chair is easier than getting out of an ordinary one. But when you get your pred back at the right dose, you won't get stuck any more 😀 and I hope that happens soon. After all, as you've already been diagnosed, it's not as if they need actually to see you.
Thanks. Funny you mention the Rocking Chair. I have a huge handcrafted one and have been using it loaded with pillows and blankets to get the seat higher..its is Much Easier to rock yourself up lol.I do have to physically see a Doc as this was an emerg doc only, and I need to see a doctor who knows PMR from previous cases, then I can get a prescription.
It is quite normal to find out if it could be PMR by giving someone 15mg of steroids a day for a week to see if that works, as PMR is difficult to diagnose. After the first week of steroids did you find definite improvement? Normally other pain killers really do not have any effect on PMR. Do the other painkillers you have been taking help?
He knew as soon as I told him what was happening that it was PMR. BLood test confirmed it.He told name that I needed to see a doc to get on a program that will regulate the dose.Thats my dilemma now, but will keep trying.
If he knew it was PMR why on earth did he suggest you drop to 10mg after a week and 5mg after 2 weeks? He should have known that is incorrect dosage for PMR. All you need is a prescription for steroids that gives you a sufficient dose. Did they work OK with the 15mg? You should not need to take other painkillers which probably do not work anyway, if they do you should be considering it may not be PMR.
Oh Vortex 😳
I’ve just seen your post and I do feel your pain! 😖 Like you and Sharitone and many others on here I was in agony and could barely move for weeks (was it months?!?) before I managed to get to see a GP who would prescribe prednisolone. In my case, the emergency doc wouldn’t give me anything, as she said it had to be someone who could follow up. So a bit like your situation, I guess…..
I’m trying to remember how I got through those weeks/ months without prednisolone. I know I needed help to get in and out of bed etc, held on to the walls in order not to fall, and basically waited it out each day until I felt a bit better - which usually took some hours. I’d shower some days at around 5pm, have another rest and then a bite to eat…that was all I did all day.
So….I can only say, you have to get to a prescribing doctor. Do you have someone to help you? The reassurance I can give is that once you are on the right dose of prednisolone (probably around 15 - 20mg) you should soon feel much, much better. Not necessarily 100%, but much, much better 😊
Please stay in touch, get to a doc and let us know how you get on.
Sending you hugs, Nextoneplease xx
Thank you for your kind words. i feel what you posted to the core.I have a hubby here,,it took him a while to realize how much pain I was/am in though, only because I would still attempt to do everything I always do. Then it got ridiculous and I stopped trying to do everything..he picked up the slack.I will dig hard to get a doc tomorrow, but not an easy task. GOing back to emergency is not the brightest solution as again, they can only prescribe and not follow up sadly.I will keep ya'll posted and I thanks you all so much for the feedback and well wishes. Its nice to commiserate with those who know what I am feeling. <3
Sometimes drop-in clinics have doctors who also run a practice. That's how one of my sons got a doctor. The person he saw actually asked him if he had a family doctor and as our doctor had retired a little while before he did not, and she said he could become a patient with her. This was about eight years ago and I know things haven't improved, but it's worth asking. I was in much the same position as you with undiagnosed PMR for a while. Tears at the clinic where my retired doctor had worked, and about to be turned away as I was not a patient there (after about 40 years!) led to a compassionate reaction and I was placed with a doctor who did quickly diagnose me and look after me quite competently I must say. I had spent some time trying to get a doctor in other places before going back to the old place and trying to get in to see their duty doctor. Afterwards the doctor who agreed to take me, although she wasn't really taking on any new patients, also took on my husband. Good Luck!
My heart goes out to you and I pray the walk in clinic can be of more help to you.Before I received my script for prednisone I would wake every hour crying in my sleep. I was in such pain that I couldn’t sit still, walk, lie down and use the loo. I had to lift my arm with the other hand to reach anything. No pain medication helped until prednisone. It’s recommended that you begin with 20 or 15 mg of prednisone and stay there for at least a month then slowly taper . I had to go down by 1mg over six weeks till 10mg and now only by .5mg. Every time I was pushed to get to 10mg quickly I would flare and be back to 15mg to start again.
Look for the Dead slow tapering regimen on this site. Also print off all the articles that will help inform who you might see at the clinic. I send articles to my rheumatologist when I need to bring him up to spend.
Best to you and keep us informed on how you are doing.
Go to backintelligence.com where you will find very good advice re sleep. As for trying to explain your pain, don’t try! Your close family and friends will see that you are struggling. There is nothing more frustrating when someone says, “You look perfectly alright, there can’t be anything wrong with you!” However, as soon as you see a doctor, make sure you tell him/her exactly how much pain you are in. The only advantage of having scoliosis as well as PMR is that I don’t have to convince anyone that there is something wrong with me! I wish you all the best!
Hi. Like you before being diagnosed had trouble getting off loo, chair and bed because of joints just seizing up. Frustrating and frightening! I am on steroids, more movement but lots of other things wrong now. Can’t believe it, from no tablets at 70 years to steroids and many more. No fun getting old. Good luck.
I too am a natural side sleeper but found that impossible when I was in so much hip/shoulder pain. We already had a mattress topper but that didn't seem to be helping much. I ended up with two duvets, one on top and one to lie on. This helped quite a lot, and I began to feel that I had actually dozed off at some points, rather than lying awake all night tossing and turning (trying to anyway!). It was a bit complicated because my OH didn't want a duvet underneath him, but it did definitely improve things.
I hadn't quite thought of myself as a sandwich filling, but you're right!
At least keep the pred dose going somehow. I think I started at 15 mg (can't remember actually, maybe it was 10mg but I don't remember it was too long ago) and that sorted it for the beginning. Thankfully was able to eventually get in to see a rheumatologist, but I suspect even an emergency clinic should be able to get you a month's supply? Additionally, the dead slow taper is crucially important I feel, but that would be later on. Oh, also, I found, for me at least, a split dose worked perfectly which means some pred in the morning upon waking (9 am) and the rest at bedtime (11pm or earlier). So there are options. I recall I copied posts on split dose and also initial doses of prednisone from this website. Glad you found the forum. It has been a Godsend for me! These folks know far more than my rheumatologist, to be sure but I still run everything by my GP and rheumy.
Hello The Vortex, the book Polymyalgia Rheumatica and Giant Cell Arteritis is well worth reading. It is also available as an ebook. I do hope you get to see a doctor soon.
Be careful combining CBD and Prednisone
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