My sister was diagnosed with PMR in January 2018. We have gone from never having heard of this condition to feeling that every second person has it. Is there an epidemic right now? And yet there seems to be so much mystery in getting information about it from the Medicos. Can anyone add to this please?
JUST AN OBSERVATION!: My sister was diagnosed with... - PMRGCAuk
JUST AN OBSERVATION!
Written by
wigglesworth
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DorsetLadyPMRGCAuk volunteer
Hi,
No I don’t think there’s an epidemic! But once you (or a loved one) have an relatively unknown illness, you become more aware of it by
a. researching it, or
b. mentioning it to others, who then say “oh I know someone with that.”
There is quite a lot of information around about PMR and GCA (maybe not as much as we would like in the medical community) but it’s certainly not “in your face” like cancer or heart illnesses.
The PMRGCAuk charity gives loads of info -
pmrgca.co.uk/content/home-page
Plus this gives a patient’s view (yours truly) -
healthunlocked.com/pmrgcauk...
Yes, thank you DorsetLady, I do know what you mean, but I’ve found this to be quite incredible how many sufferers there are and so little medical guidance. People appear to be adjusting their medication themselves without proper management. My sister would never think of doing that. She is guided by her Specialist.
Anyway, thank you for your response. Lovely to chat with you. From Oz!
I think the self medication probably falls into two camps-
a. those patients who maybe have had the illness for some time, know their own bodies and have their doctor’s permission to do so (probably within certain parameters) - and that’s fine as far as I’m concerned. I had GCA and early days my GP and I agreed my medication. When I got lower in dose and changed surgeries, my new GP gave me permission to taper as I felt fit - his view was that I knew my illness and my body better than him, so I made the decisions, but I always had access to him by phone as needed.
b. More worryingly are those patients that seem to have been left to cope on their own without the proper guidance from their medical teams - sometimes through lack of knowledge and/or lack of appointment time with both GPs and specialists.
Your sister may feel in time she falls into the first group.
Yes, you could well be right I suppose. Many thanks.
in reply to DorsetLady
I fall into the second category. Just left to my own devices, not by choice but getting a doctor's appointment is very difficult to get. When I eventually get to see one I often know more about it than them and I never get any of them to want to monitor me. At the moment I am in the state of dreadful fatigue. I managed to find an appointment on line and can only imagine what he will say. Synacthin test before Christmas suggested my addrenals could work. I'm on 3mg now.
I will report the outcome.
wigglesworth in reply to
That sounds just awful Pastit. Really sorry that you are being treated this way.
in reply to wigglesworth
Thanks wigglesworth, it would appear to be fairly normal in some areas, and I don't know what the answer is with the current state of the NHS.
Only time will tell I fear 🤔
SheffieldJane in reply to
Perhaps another Synacthen Test is indicated now? Adrenal Insufficiency cannot be trifled with. You’ve done pretty well as your own physician. I have started taking Folic Acid to combat the fatigue. I have previously, been worse. I am tapering to 6 mgs slowly, diagnosed March 2016.
in reply to SheffieldJane
That's interesting, I did wonder if my bloods were out of order. I will see if I can get a blood test.
Daisychain12 in reply to
Pastit that’s the least they can do. Demand it. You poor thing 😭
What system are you using Jane to taper? I have been at 5 for several weeks but felt so bad I went up to 15 for 3 days with improvement. Trying 5 again tomorrow. I have been stiff but okay until the other day.
If you are only a tiny bit too low it can take weeks for a flare to show up - the inflammation takes a while to get to a level that causes symptoms. So think hard about where you go back to.
I checked calendar and I was at 5 for a month but stiff. Where do you think I need to aim? Blood tests never show anything so I don't even bother. Thanks
Oh dear. That’s so true yet reading it fills me with despair. How are we meant to navigate this damn illness xxx
This time I started one day 6 mgs and 6 days 7 mgs, the following week 6mgs two days and 7 mgs five days, then three days 6 and 4 days 7. I am currently four days 6 mgs and three days 7 mgs. I am trying to stimulate my Adrenal glands. I am doing ok with it, no science, just instinct.
Glad you are doing well. It is fits and starts isn't it?
Thank goodness for the starts. 🌦
Jane you are doing brilliantly xxx
Hi gorgeous one! Jane what is folic acid doing for fatigue? Shall I get some? Love and hugs to you. Xxx Linda xxxx
I believe that if you are low on B12 it gets prescribed. Lack of B12 makes you nervy, low , lacking in energy. I have not had this confirmed by a blood test and am probably wasting my money. Sometimes the placebo effect helps. I am quite suggestible. If your docs are amenable Linda you could ask them to look for any deficiencies in your blood. I was extremely low in vit D and was given an initial large dose.
B12 and folate (folic acid) are different B vits. Folate is B9. But they used to have a supplement called B12 and folate...
You are given folic acid to help avoid methotrexate side effects - I asked my GP if it was OK to keep taking them and she said it was fine. Hoping my hair will benefit!
I felt really fatigued during my slow drop from 6mg down to 3mg (taking almost a year to get from high to low) - then all of a sudden Adrenals decided to fire up! So hang in there, they will catch up eventually. 😊
in reply to DorsetLady
Yes I hope so, it certainly is a trifle bewildering 🤔
Daisychain12 in reply to
Oh pastit. I’m so dreadfully sorry. This is intolerable. Please keep me in the picture and pm me. I’m in strife too. It sucks. Linda xxxxx
in reply to Daisychain12
The only way to look at it is that there are a great deal more serious complaints, and when I read some blogs, I don't feel so bad 🤣
Daisychain12 in reply to
Yes but still 😭
unfortunately I fall into the (b) category... my Rheumy doesn't really believe in PMR, especially for my age (55), and my GP doesn't seem to have a clue, so, I tell her what I am thinking of doing, she says yes, with absolutely no suggestions of her own, and writes me a prescription... if it wasn't for this site I would be well and truly up sh*t creek without a paddle!
Hi
I’m really sad to hear that! Your Rheumy should have a more open mind about the age factor- there’s plenty of information out there now - but unfortunately some seem to be behind the times.
As for your GP - afraid you’re not alone in that! My first one obviously was clueless initially- hence the misdiagnosis- but I’ll give her her due, she soon learned very quickly about GCA!
Hopefully yours will learn something from you!
Hi !!! I am in Melbourne where are you? Xxxx
Yes, me too! Glen Iris!
Can I suggest the obvious - your sister and Linda meet and support each other?
I’d love that xx
Have pm you xxx
I asked my Rheumy the same question about GCA, because I had the feeling it’s not as rare as stated and I wondered if there was an environmental factor to our area. He said no, it’s not on the increase but awareness and better diagnosis is, so that would make it seem like an increase in cases.
Although latest figures suggest it is on the increase, when I was diagnosed 4 years ago under 20% of PMR sufferers went on get GCA and now it is 50% - but as you say the awareness is improving all the time and is much needed as there are sufferers out there that don't know they've got it! I've done my bit by putting a laminated awareness poster in my GP surgery!
50% get gca? Will add that to my worries.
UP to 50% so you've half a chance, I wouldn't worry. Stress needs to be kept to a minimum so important to keep calm, accept the illness as it is and pace yourself on a daily basis, you'll get through it far quicker. How long have you had GCA/PMR?
Will arrive at 2 years next month. Currently starting 5 1/2 mg (again!). Stressed out of my mind. The journey hasn’t got a lot easier as the doses have got lower, contrary to my expectations. But that’s another post...best wishes to you and thanks for the good advice.
I'm 4 years last March and still on 4.5mg (again) and suffer severe withdrawals each time - it takes between 8 and 12 weeks for me to get stable after .5mg reduction - I can no longer do a 1mg reduction at this level, so what you are experiencing is not out of the ordinary (compared to me) - everyone is different and there is no one size fits all. Try not to be in a hurry to reduce. I hope you can get some relief soon and Just to say the first 1 to 2 years are the worst, you hopefully will start to feel better very soon. ATB
Yes I’ve also read that the 1st couple years are the worst. With that in mind, I’m gonna throw myself a party on my anniversary! Your staying at 8-12 weeks after each 1/2 reduction—maybe I’ll try that. Ive been reducing by 1/2 mg using the dsns method but have stayed at each juncture for only 30 days. And this time when I do get back down to 5 I’m gonna stay for several months before attempting again, since I’ve already bombed out twice by trying to go to 4 1/2, using dsns and staying at 5 mg for only 30 days. Reading posts here have convinced me it’s the way to go. Thank you for your help!
That's the spirit have a good party! Listen to your body, when it's had plenty of rest from the last taper, give the next .5mg a try and if it doesn't work don't go zooming back up stay put and within a couple of days you should feel as before. I reduced yesterday .5mg the first time since June, had a terrible headache all day stiffness all the way up my neck it was quite unbearable, recipe to increase but I stuck it out with pain killers and today it's all gone. I won't reduce again until next Sunday so a week of one day reducing for at least a month then try two days and so on. It is so slow you begin to wonder but it's heading in the right direction for me, I know my body and you will too, good luck!
You’ve landed where a lot of us congregate, so it does give that impression. I think the site has 6,000+ members. We are so steeped in its effects that we don’t feel isolated any more. There are still appalling pockets of ignorance in the medical profession, in spite of the Charity’s profile raising efforts.
I really don’t think I could have coped without this forum, it has helped me so much, so many side effects from the medication, but so many others suffering the same. I have learnt so much and am so grateful for all the posts. I am not nearly as depressed now, as I was before joining.
I wish everyone well x
in reply to Jeannie29
Ditto 🙂😎
Jeannie that is exactly how I feel. You and I have so much to thank the forum for and I too have been buoyed up by its members xxx
Hi Daisychain12, yes I do not feel quite so alone since I’ve been listening to so many stories, up until joining I honestly thought that apart from the PMR that I was becoming mentally unhinged, now I know that it’s the medication I’m feeling so much better.
Also learning that many others are suffering so much more than myself, yourself included, I do hope that you are feeling better than you were, since
your appointment with your doctor.
I feel a connection with you since I’ve known you are in Melbourne, because you have something there that is beloved to me , my GRANDSON!!!!
He’s in Geelong.
Keep us posted with your PMR journey and I hope you get some comfort knowing that everyone on this forem is wishing you well x
Darling my mother and step dad live just outside Geelong. In Drysdale. So I feel if I can form a tiny mental link between you and your darling boy that makes me happy. I feel deeply your pain at the separation. I am sorry you felt
Unhinged but in all honesty it comforts me as ghastly as that sounds. I guess it is very human to need to feel others feel as we do If ever you want me to ring your grandson or if I can help in any way let me know. Love. Linda xxxxxx
Hi Linda, what a lovely person you are to offer to do that, when you have so much ugly stuff going on .
Thank you. I do hope that things have improved a little for you since last week, and I really do wish you well x
Jeannie. I promise when things improve I will be shrieking so loud you will hear me. I am pinning a lot of hope on this afternoons appt with rheum. Poor man has no idea of the virago who will be entering his room. Geelong is a lovely town so pretty and lots of beaches. I guess it’s small comfort when you miss a loved one but I promise you it is very lovely there ❤️❤️❤️❤️
Yes my sister is suffering the disabling fatigue.
How long she been on Pred. Starting dose and current dose? We may be able to suggest a way forward for her.
Fatigue can be caused by both medication and illness - and if course lifestyle - is she trying to do too much? All factors.
PMRproAmbassador
You may feel you want to be guided by your doctor - but when you see a rheumatologist every 6 months if you are lucky it isn't easy to get help when you need it when something goes wrong. Some GPs are excellent and do know what they are doing but even so, for many it may involve a wait of 3 or 4 weeks to get an appointment. That may be 4 weeks in which the niggles as a result of a reduciton in dose have built up to a full blown flare. Caught early the flare can be avoided by going back to the last dose that worked but if you leave things - it may mean going back to the start.
Everyone is different and this isn't an illness where you take a course of steroids, it is cured and that is it, all you have to do is stop taking pred. You start with a dose that works for pretty much everybody and then taper the dose to find the right dose for you to wait it out in realtive comfort. Too many doctors don't understand that concept - and that includes rheumatologists too. Someone on another forum has just announced he is starting an 18 month course of steroids for PMR - that's what his rheumy has said apparently. He also claims he is the top rheumy in the UK in the field. None of the rheumies I know through the charity would ever suggest it will be done and dusted in 18 months - and 4 of the top ones in the world have published a study where it turns out that the median time to discontinuation of pred in PMR is 5.9 years and fewer than 1 in 5 is able to get off pred in under 2 years.
So what you are told and what you experience may be diametrical opposites, and if you have a doctor who doesn't listen to you - what do you do?
Of course I hear what you are saying. My sister is fortunate in that she sees her Dr every 3 weeks and he will always accept a phone call if necessary.
My gosh where does your sister live seeing her doctor every three weeks, is that just for PMR? I went for two years without seeing my doctor. It takes over three weeks to actually get an appointment for anything at my surgery. It even takes a week to book a phone call.
in reply to piglette
Ha, you obviously go to the same surgery as me 😱😵😲😉
Piglette. Where are you living? That’s just dreadful. There must be more out there for you. Is there an arthritis Foundation or other charity type institution?
I live in the south east. I used to be a trustee of a national arthritis charity! I even got the MBE for it.
😭😭😭😭. Oh no. That is disgusting. I am livid. I just help you. I can’t bear for you to receive this atrocious treat. What can I do!!!!!!!
I do go privately to an osteopath and did lash out on a rheumatologist recently who was pretty useless. He told me to reduce slowly and that was about it. I am also trying a manual lymphatic drainage person as I have badly swollen legs and feet from fluid retention, probably caused by the steroids. I am not sure she is that good, I have been once and spent the whole time getting a form filled in and her measuring lots of parts of my legs and putting black marker all over them. I might give her one more go.
Lumme - the guy just got on with it here! Looked at the fluid retention and started with a standard approach. Which worked extremely well so why do it any other way. Sounds like rip-off Britain to me...
Same for me! You then have to see whoever’s available, and are asked, ‘What can I do for you today?’ There is obviously no time to read your notes in the allotted 10 minutes. The doctors are listed with their special interests- diabetes clinics, stroke, gynaecology/contraception, but PMR has no mention, including notices or leaflets on the waiting room walls.
That really annoys me too. I had a call to make an appointment with my GP, when I actually got there only to be asked What can I do for you? Can’t they just look at their screen for two seconds? The same with telephone calls. I was phoned up by reception to make a telephone appointment with my new GP, only to be asked by her “Did you ask to talk to me or did I ask to talk to you”. Surely they have something on their screens.
I rang for an appointment, Monday mornings 8.00am. When I got through, the appointment-making slots were full, and had to ring the following week to try and make an appointment which had to be booked 2 weeks in advance. Things are only going to get worse as hundreds of new houses have been built on green field sites, but we still only have two surgeries. Even the Dr issued a statement complaining of this.
Are you able to book the next app. before you leave the surgery ? that is what I do. I have gone from every three weeks to four. Surgery sends me a reminder text the day before, followed by night before.
I am managing my own taper, just let him know what I have gone down to, or not, maybe moan a bit, then he gives me a script for supplies.
Perhaps you can educate your surgery😏
My surgery is full of locums, we seem to get through nurses and receptionist pretty quickly too. We have had five practice managers in the last two years. Who do you educate?
I try not to go to the surgery that often although I do see the nurse quite often for bloods and leg dressing on lesion caused by steroids. I can wait for the bloods and am able to do my own dressings although the nurse does check every so often. We are left with two nurses who are both part time, we used to have five.
I thought after I posted I was being rather glib!!!
Since May 5 when I started down this road, fell out with first GP, now have this lovely listening caring locum who leaves in three weeks, although he would rather stay, so why is he going Other patients have said he had found solutions to problems not resolved by others in the practice. Surely not old fashioned jealousy 🤢
So starting again with another senior partner I have confidence in, let’s hope it stays that way.
But after reading yours and others experiences I must be lucky. It is a good job you are able to take an active part in your needs, as a lot can’t.
It is difficult to challenge staff when they have an inflated sense of their ability to know it all. Instead of listening to patients. They should be able to recognise when a patient is taking an active interest in their treatment, my departing locum did, and encouraged me. Just added strain for us trying to be treated as intelligent humans.
Pity we can’t get a least one in a practice to read this site at least once a week ha!ha!ha!
Further education.
I am not sure what the answer is. I did contact the surgery about organising classes at an outdoor gym we have on our playing field. I was prepared to organise it and hoped they would advertise it to patients. They did not want to know as they were too busy. I am sure we could improve things by getting people to help themselves more and take less drugs even.
Haha - in our dreams for most of the people on the forum who live in the UK. And when I DID live in the UK and went to get more pred I hadn't sat down before she was writing the script - she never had time to tell me anything or answer questions. Which was why I became an expert patient in the PMR/GCA field. I had a load of medical background and I do have close links now to top rheumies in the international PMR/GCA field so it has been relatively easy for me but most people would struggle.
To be fair, now I can see my GP the same day and as often as I like but I have to sit and wait and that could take all morning. And if I need my rheumy I can call and speak to a nurse and they will find out when I can see him. But I don't live in the UK.
I'm very fortunate where I live in Canada, just outside Toronto. My GP will always squeeze me in but has told me if I am not feeling well enough to make it there to just call and she will call me back. She has even given me her personal cell phone for when she is not working. Granted, I have been seeing her for about 40 years so we have established a good relationship. My rheumatologist will also squeeze me in if I am having symptoms and will return a phone call the same day or next.
My doctor gave me excellent guidance at the beginning (at least my new doctor did, the one I'd gone to in pain for about a year was no help at all, not even a diagnosis). When my tapering appeared to be getting too fast I showed her one of the slow taper plans I'd found through the forums and asked her what she thought and she told me she was fine with my following the plan. So I do my own thing regarding tapering, but with the backing of my doctor. PMR is simply too idiosyncratic for a rigid one size fits all plan to be applied.
And regarding availability of doctors. Here (Nova Scotia) when the young useless doctor who had replaced my retired doctor moved away I had no GP and no access to medical care except through emergency departments and walk-in clinics, which do no follow up. I got my current doctor by basically having a (quiet) meltdown at the receptionist's desk in the practice where I'd been a patient for over forty years but was being told they weren't taking new patients as my doctor had gone. By then I was losing so much weight as well as being in great pain that I thought I was dying.
And I'm one of the lucky ones. A friend of mine has no GP since hers retired and she is suffering from worsening IBS. Another friend lost her GP who coordinated all the specialists owing to burnout, not retirement, while she suffered from ongoing issues from a serious vehicle accident and her husband was dying of cancer. Other healthier, but aging, friends are also now with no GP. It's a disaster. I shudder to think what would have happened to me if that receptionist hadn't taken pity on me, and one of the doctors who wasn't taking new patients agreed to see me anyway - and came up with a diagnosis in double quick time. Within a week I was on prednisone.
in reply to HeronNS
Well that's a story and a half, me thinks, and I thought I had difficulties 🤔
In Ontario, Canada I found when I moved here in 1999, getting a GP for me and my family was a bit challenging (about 5 months with no Dr.). I recently moved to s new, smaller community and had a new Dr. in a few weeks. Took him 5 months to figure out PMR, but receterral to Rheumy was only 7 week wait. Have seen Rheumy twice, about every 7 weeks or so, monthly blood tests to her and my GP. Like my GP, but verdict out on Rheumy, will attend one more appt next month. If it doesn’t go well, will ask for second opinion as I have located a recommended Rheumy in Hamilton only 1.5 hours away. Current Rheumy is one hour away.
I agree. I’m convinced there’s an epidemic. 3 or 4 of those Facebook groups get 15-20 new members every week.
Yes I think it’s quite extraordinary the number of sufferers.
Cassie I know what you mean but from having fibro I learned that there sadly a lot of desperate souls who latch on to a new illness as if it is the answer but then move on to the next one. This is why I was so wary of this forum. Now I see it is not like those groups I feel safe xxxxx
It surely is “not like those groups”. But fortunately they overlap a little and that’s how I found Kate’s book (I think) and then this forum. I was into PMR for 15 months before I looked for any on FB.
Yes the internet has a lot to answer for but my gosh it’s doing a lot of good too xxx
Hi Wigglesworth, sorry that your sister has joined the PMR club. I too had never heard of it before being diagnosed with it!
I too initially found it extraordinary that members of this community discussed varying doses, (seemingly on a whim), despite the doctors advice. However ot quickly became evident that some doctors, and even Rheumies, stick to a script in trying to get patients to reduce the amount of steroids they are taking (known as tapering). Sticking to a script doesn't work a) because we are, each one, unique! B) The symptoms of this disease fluctuate day by day.
I have found this community invaluable a) as a knowledge / understanding base and b) in developing my self confidence and assertivenesd to self manage my treatment, in negotiation with GP.
Your sister may well surprise you as she becomes more assertive and challenges GP over medication decisions as she progresses on her PMR journey, which can be a bumpy road at times!
I wish her well.
I think part of the problem is that many GP's don't diagnose it correctly. Initially, my doc thought my pain was "overuse" due to a vigorous exercise regimen that I had. Then after six weeks of pain and getting worse, and then moving to my shoulders, she sent me to an RA specialist who made the diagnosis.
The other part is that PMR doesn't kick in until a person is older, many >70 years old. So if you look at that population, there is a much greater incidence of PMR.
Best wishes to your sister. She should be on this discussion to stay in touch and learn.
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