Newly diagnosed with PMR

[magmapearl3]

Being newly diagnosed with PMR I am so pleased that I found this site to learn and share more about this condition. I am grateful to Kate Gilbert who mentioned the site in her fantastic book ' Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. Although I live in New Zealand I was able to order the book on line and much of the content is relevant to the situation here. So, my journey of discovery has begun and I'm looking forward to sharing and reading posts to help me along the way.

[Parijm]

Magma pearl I am sure you will find great support and information here as I have done. A PMR sufferer for one year I felt in the dark with not much information available from doctors who have only 5 or 10 mins with you. I have recently gone to a Rheumatologist who confirms my condition. PMR is a journey, guided by the medication we need to take. There are ups and downs for sure, but you will be able to share your issues here and see how others deal with them. I make lots of suggestions when I see the Dr now and feel more in control of my own recovery. Good luck to you.

[magmapearl3 in reply to Parijm]

Thanks for your reply Parijm. I feel confident that my GP will include me in decisions about treatment etc as she's already been very supportive and indicated that how the treatment progresses and the speed of tapering will be very much determined by me ( with her guidance of course) . She seems to be very knowledgeable about PMR and GCA although there were a few things like Prednisone side effects that I don't think she was aware of. I think it's also a learning curve for many doctors too . I look forward to reading and sharing posts with people who are going through a similar journey.

[Celtic PMRGCAuk volunteer in reply to magmapearl3]

It sounds as though you have a good relationship with a caring GP, magmapearl, so stick to her - some aren't so lucky! As for her being unaware of Pred side effects, there are potentially so many that I doubt many GPs are aware. However, no-one gets them all fortunately and a few lucky people don't have any. Hopefully, she is aware of the need for, and has prescribed, a calcium plus Vit D supplement alongside the steroids to help with bone protection. You will find Kate's wonderful book provides many answers to questions that crop up as you adapt to having PMR and its treatment, plus there is always someone around on here to offer further help and support from their experience, and of course the PMRGCAuk website contains lots of helpful information.

[Hidden in reply to magmapearl3]

Hello magmapear, I too was diagnosed with PMR, back in Dec 2019. I think I had it for longer than realised as I was getting bad headaches and Occipital bone pain too. Diagnosed with osteoarthritis and found that disc 4 and 5 were worn. However, one morning I found I just couldn't get out of bed from the pain in shoulders, hips and knees and knew it to be more than what doc had told me. Took myself off privately to see a Rheumatologist where I was diagnosed with PMR. He started me on 15 mg of Prednisone which worked immediately after one hour of taking them. Due to lack of 16 days sleep he told e to drop to 10 mg. All was going well until I tapered down to 8.5 mg that's when jaw pain started. Because I've been very anxious knowing that GCA could rear it's ugly head with having PMR I wasn't sure whether jaw pain was due to tension in my jaw or GCA. My rheumy didn't take any chances and started me on 40 mg which I've been now taking for 8 days. I do hope you cope well with your tapering. I was advised by the ladies on the forum not to taper very slowly. What mg were you started on?

Anne

[magmapearl3 in reply to Hidden]

Hi Anne. My post was from 5 years ago and I'm still slowly tapering. I'm now down to 1 mg but can't go lower yet. I'm not complaining though as that's a very low dose and is managing (just) to keep the PMR controlled. I think it may be called a maintenance dose. I started on 20 mg 5 years ago but yo - yo ed up & down due to other health issues. All the very best with your PMR journey. You'll certainly get the best of support on this site.

[Hidden in reply to magmapearl3]

Morning, yes, I was told yesterday by one of the ladies that your post was old. So happy that you seem to be in control...my journey has really only just begun. Yes, so many lovely ladies on the forum that are there for us with loads of knowledge. Blasted PMR is so very common, I'd never heard of it until last year. It's the GCA that concerns me most though and with me being on a high dose of Pred it's going to take me ages to finally be off it too. It's the virus now that's the main concern to society. What country are you in ?

Kind wishes

Anne

[magmapearl3 in reply to Hidden]

Anne, I'm in New Zealand although originally from the UK. Covid 19 is hitting the country now quite quickly and I will go into self isolation this week as I have underlying health issues and worry about low immunity having been on long term prednisone.

[PMRpro Ambassador in reply to magmapearl3]

Not sure that the length of time is as important as the current dose - and although the official advice from rheumatologists is that PMR puts you at increased risk if you do develop Covid it doesn't make it more likely that you will contract it than anyone else. The dose of pred is another matter - and one rheumy feels above 5mg is the threshold for concern while the official advice is that it is 10mg.

[PMRpro Ambassador in reply to Hidden]

It may not take you any longer to get off pred than with PMR - it all depends.

[magmapearl3]

Many thanks for your positive words of encouragement Celtic . I certainly do feel lucky to have an understanding and well informed GP .

[PMRpro Ambassador in reply to magmapearl3]

Welcome to the club no-one wants to be a member of!

The only thing I need to add to what the others have said is DON'T TRY TO REDUCE TOO FAST!! Little steps taken with patience is the A and O in PMR.

Many of us have found it is WE who have to guide the doctors in how and when we can reduce successfully - I am probably one of the few who has a GP who thinks I go too fast. Which is ironical when you consider how I preach the "Dead slow and nearly stop" reduction plan!

[DorsetLady PMRGCAuk volunteer]

hi magmapearl3,

Welcome to our crazy world of PMR/GCA, I'm sure you gets lots of good advice from this forum - I always have. No matter how silly, or insignificant the question may seem, please ask it. As you have probably already discovered most of your friends and family have no idea what you are going through, and sometimes you feel as if you are the only person who has your illness - rest assured you are not!

As a personal question, whereabouts in NZ do you live? My daughter lives on south island near Methven. I spent Christmas & New Year with her - can't wait to get back. Lovely country and very friendly people. Take care, DL

[magmapearl3]

Hi DL - thanks for your kind welcome and words of encouragement. I live in a rural town in the Waikato of the North Island so quite a long way from your daughter.

[magmapearl3]

Thanks also PMRpro for your words of wisdom!

I think my main concern currently is trying to decide if some of my side effects of the Prednisone are something to worry about enough to report to the Dr. I have noticed that a couple of hours after taking them ( I'm currently on 15mg and due to go down to 12.5 in a few days) I feel a pulsing sensation or a throbbing sensation which is painless . It's hard to describe but it's almost like I can feel my blood pumping through my veins in time to my pulse. I was wondering if it's got something to do with blood pressure . The last time I had it checked it was higher than normal for me and the Dr wants to monitor it and possibly put me on blood pressure tablets if it gets any higher.

[DorsetLady PMRGCAuk volunteer in reply to magmapearl3]

hi again magmapearl3,

High blood pressure can be side effect with Pred, but I wouldn't have thought that 15mg would be high enough to cause a problem However, one never knows, especially if you already have a tendency towards it.

I had high blood pressure years before GCA came along (a family trait I'm afraid). But once I started the tablets its been well under control, and fortunately has never been a problem since, even on steroids. Best to get it checked though. DL

[magmapearl3 in reply to DorsetLady]

Thanks Dorset lady- the doctor asked me to get the nurse to check my blood pressure again when I went back a few days later and it had gone down very slightly. I thought the doctor would ring me if she thought it had gone too high so although it's in the high range it's not ' dangerously high' ( their words). I will get the doctor to check again. I did try and describe the symptoms to the Dr a few weeks ago. I recall having the symptoms prior to taking the Prednisone when my PMR symptoms were worsening so maybe it's a vascular thing due to the PMR that the Prednisone isn't actually controlling yet. PMR seems to manifest quite differently in all of us doesn't it ? ( apart from the common symptoms of pain, stiffness , fever etc) . What a journey of discovery it is. At times it feels every day is different and I think great that symptom or side effect is under control and gone and then it's back a few days later! On the positive side I have no pain, stiffness or fever now so I can go to work and feel sort of normal. Thanks once again - hope everything's going smoothly for you.

[PMRpro Ambassador in reply to magmapearl3]

I used to have strange "wobbly" sensations a couple of hours after taking my pills in the morning occasionally, felt quite faint and peculiar. I know another lady who also had similar sensations. For both of us it seemed to coincide with doing maybe a bit more than we should - going out shopping and walking too much for example. I just made sure I waited until later in the day to do such exciting activities and her doctor suggested trying taking her pred at night - unlike the usual recommendations. It worked brilliantly for her, no morning stiffness and no more funny feelings, they happened while she was asleep.

I will add however, that I did have other strange sensations and I had had them long before pred (I had PMR for 5 years before pred was started) - palpitations and sometimes being a bit out of breath though that happened less often. The GP dismissed them (your age yet again) but eventually I developed atrial fibrillation and severe tachycardia in response to a medication that was being used for back problems - a very interesting experience and not one I want to repeat, with a heart rate of 230!

However - since the atrial fibrillation has been managed successfully with medication those strange symptoms have never happened again. The cardiologist is confident the a/f is due to damage done to the electrical cells in the heart that manage the contractions - by the autoimmune illness that underlies PMR and causes the symptoms we call PMR. If you have anything at all resembling that - do get your GP to do a proper check.

[magmapearl3 in reply to PMRpro]

Thanks for that PMRpro. I will mention it to the doctor as I too have had palpitations and rapid heart beats that took my breath away and made me feel faint for quite a few years prior to my recent PMR diagnosis but the previous doctor I had just listened to my heart and said it was fine. The episodes only lasted a few seconds each time and weren't on a daily basis so maybe hard to know what was happening as far as the doctor was concerned as I was otherwise very healthy.

[PMRpro Ambassador in reply to magmapearl3]

I nearly mentioned that - you need at least a 24-hour ECG but if they don't happen that regularly even that will miss them. There are longer-term ECG monitors but how common they are in the UK I don't know. My GP told me if I was ever worried I should dial 999 - which I thought was a bit OTT but does make sense. Paramedics carry an ECG machine and if you have an episode that lasts long enough they will get an ECG trace which is likely to provide more evidence than your GP listening to your heart - mine was fine between times, my BP was glued at 120/80 and the day I was admitted with back pain I was congratulated on my wonderful BP for my age (just under 60 at the time) at 130/80. That all changed a few days later - when I was told I'd got signs that I'd had raised BP for some time, the ventricle wall in the heart was thickened. I'd not really paid any attention to the funny episodes - just thought they were due to not having had breakfast or something.

Don't let the GP fob you off - but they do take a/f far more seriously here in mainland Europe than in the UK! Shortly after my experience my friend was rushed to A&E with a tachycardia of 232 - and discharged a few hours later with aspirin! I told her to go to her wonderful GP who stuck her straight onto warfarin.

Here they wouldn't have let her home until she was stable on warfarin or at least with heparin injections in the meantime. That probably reflects the fact who you see in A&E is a bit of a lottery in the UK - she saw a diabetes specialist. A few weeks ago my daughter, blue lighted in with a really bad asthma attack was told it was due to being overweight (which has a bit to do with a few months of fairly high dose pred for the asthma) - by a gastroenterologist. Luckily she saw a chest specialist the next day...

[Megams]

Hi there Magmapearl3

If it is any consolation to you I live in Auckland NZ - if you would like to email just let me know.

Had PMR for about a year before finally diagnosed January 2015.

Have ordered several books, Kate Gilbert's being one of those and found extremely helpful - our local library did not have one book on subject. Also doing further research which is helping me understand our condition which is at times most difficult as you are finding out.

There is a Facebook page on PMR in NZ but not actively used from what I see - we are sadly lacking in NZ for support and I am going to address this at some stage soon.

Kindest regards to you and welcome to this website which is extremely beneficial and most helpful - your questions will be answered by lovely ladies and gents who have been on their journey for some time.

Take good care in meantime.

Mary Beth (NZ)

[magmapearl3 in reply to Megams]

Thanks Mary Beth . You're right about the lack of support networks in NZ which is why I'm so pleased about being able to access this site. I've been on the NZ Facebook site and yes, it appears to not be used often. I'm only too happy to help in any way I can if you do try and address the issue in the future.

I agree that there is excellent support, information and feedback on this site and hopefully as I learn more about PMR and the side effects of the treatment I will be able to make positive contributions myself.

Take good care also Mary Beth

Margaret ( aka Magmapearl3)