I’ve had 4 spinal fusions but over the last 18 months I’ve been suffering with severe cramp and pain in my neck shoulders and hips I was tested for rheumatoid arthritis 18 months ago but only inflammation came up and liver abnormalities..I was recently referred to see a vascular specialist who has pretty much said this is all the symptoms of PMR and spinal stenosis ..as I have had checks for Dvt and Doppler checks he couldn’t understand why I was seeing him..I’m really annoyed as my cramps and pain have been getting worse over time..I’ve felt totally exhausted and have not slept properly in months and my mood and patiance is zero tolerance at the moment ..I had recent bloods done again and liver abnormalities showed up once again ..my doctors have been advised that I have an MRI scan and see a Rheumatologist..I’m really annoyed that this could have been picked up 18 months ago ..it’s back enough living with Acute back pain ..now this on top is a total shocked ..I read some of the awful effects the steroids medication you have for this but I’m in so much pain any advice glady received
Suspected PMR : I’ve had 4 spinal fusions but over... - PMRGCAuk
Suspected PMR
Well, first of all I have to tell you that if you do indeed have polymyalgia rheumatica a test week on prednisone/prednisolone will help change your mind about the value of this medication. Most of us find within a few days most if not all of our pain has gone. Even your spinal problems may be alleviated by the medication although that might respond better to certain physio therapies and exercises which help to strengthen the muscles supporting your spine.
Secondly the side effects are real, they are possible, but no one gets them all and most of them can be managed. I, for example, did not gain weight, but I did get high blood sugar, sorted by severely limiting carbohydrates; high ocular pressure, but not enough to need drops, which my eye doctor monitored closely until it came down as my dose reduced. Was diagnosed with "low bone mass" which might or might not have been caused by pred, had no previous baseline. But I felt so much better when the pain was gone that my depression lifted and I slept better. You are only on your highest dose for about a month and then you start a slow taper to find a level which will control the PMR symptoms until the disease goes into remission, which can take several years. At lower doses the side effects become much less significant.
The main effect of prednisone is to help you have a normal life, one which may not be completely pain free but will be ever so much better than before you will wonder how you managed.
It's not such a strange idea to see a vascular specialist as PMR probably is a form of vasculitis. Nevertheless it has traditionally been treated by rheumatologists, or even by the family doctor.
Thanks for your reply I suffered so long now it’s affected my depression severely having this on top of my spinal nerve damage ..I haven’t worked for the last 6 years but still in employment by my company..I just didn’t understand why my normal medication wasn’t working ..I also gained weight over time due to lack of exercise because if the pain ..but on my visit to the vascular specialist I was surprised to find out I’d list Weight..I’m seeing my doctor this comming Thursday to discuss the report from the vascular specialist ..I also obtained a specialist referral to see a Rheumatologist as I still have private medical due to still be employed..I was fairly active up until and year or so ..even with the spine damaged I have ..so it’s been pretty frustrating for me ! I’m just shocked that this wasn’t picked up sooner and I’m really scared of the steroid treatment ..so any advice is highly appreciated thankyou
Well, weight loss is another symptom of PMR. Hopefully all the usual tests have been run to make sure there's nothing more sinister going on. If we have to have an autoimmune disease, really PMR is the best. It doesn't kill us, and it can be controlled by a medication which although it has its dark side has been used for over half a century and therefore very well understood, no unpleasant surprises!
Except vascular specialists are mostly surgeons who don't know a lot about vasculitis!
He did say this to me and therefore put me on the right road too see a proper specialist about my pain and discomfort hopefully I will be getting some answers soon 😁 I feel better just for talking to people who are suffering and being treated for this diagnosis regards susan
Can I ask where you live, what country?
As heronns says the best way to unpick what's going on is to do a test trial of pred. I have osteoarthritis in my neck and spine and had 1 back surgery for a prolapsed disc. I also have diabetes, hypothyroidism, hypertension, fibromyalgia, nerve damage to my leg and foot and neuropathy and then got PMR. The reason I have mention those things is to point out that many of us have several co-morbidities and do know what it is to try and unpack which condition causes which symptom.
In June. 2016 I was practically immobile and so fatigued I stayed in most days. I went to the Dr and she DX PMR. I picked up steroids and by the end of the first day could move my neck easily for the first time in.months, and by the end of the week I was back to my usual way of walking. (not saying running a marathon!). Without the pred I suspect I would still be bed-bound.
Most of the common side effects can be managed - low carb, high fat diet, rest but keep mobile, taper very slowly and allow the pred to manage the PMR. None of us want to take pred but I certainly don't see it in a bad way . I have lost almost 3st and as long as I rest after exertion I can usually keep pacing myself so I have a good quality of life.
It's not a straight line condition even with pred. But without pred there is an increased chance of giant cell arteritis. The most immediate issue being loss of sight. Some members have sadly lost sight in one or more eyes before being diagnosed. Pred had saved their remaining sight.
At the end of the day meds including pred are your choice. But if you take a test trial for a couple of weeks and they don't help at all you can stop taking them.hood luck in your travels.🌻
Thankyou so much for your advice I also was told I have fibromyalgia many years ago but I dismissed it just thinking it was all due to my spinal problems..I am prescribed nerve damage medication which is called pregablin..they also prescribe me morphine sulphate ..I’ve not taken these meds for over a month now as nothing has been touching the pain! I just wanted something to help me sleep ..but they still would not prescribe anything ..I actually ended up in my local accident and emergency due to exhaustion and feeling so unwell from the pain and not being able to sleep this I where my bloods where done and the liver abnormalities where picked up again ..I went to my local doctors after this incident and it was dismissed and I was given mirtazepine which I refused to take as they just make me feel disoriented and pretty much much anable to do anything as part of my normal daily activities..even this I don’t work due to my back problem I like to keep busy most of the time ie gardening housework and basically keep my home nicely decorated as there is where I spend most of my time ..but basically since being in so much pain ..my life seemed non existent..I’m currently in the process of a moving arrangement going to be going to a bungalow which is ground floor ..currently I’m in a first floor and struggling badly with my stairs so the move is very welcoming but also a bit scary as there is so much to be done ..which has been a stress to me worrying how I’m going to get all these things done ! I’m very independent even though I’m in pain so all in all it’s been very frustrating I jut hope I get put on the right path to relive my pain thankyou so much for you insight into this problem I’m so glad I found this group regards susan
Heron is right about Prednisone. If you do have PMR, it will relieve you of pain like nothing can. I was 100% pain free in about 48 hours or less.
I know for sure that there is an autoimmune disease that attacks the liver. My cousin has it and was started on 60mg of Prednisone (.high dose); She had no symptoms. She just went for what she thought was a routine check-up. Her liver abnormalities on blood test came back abnormal.
She was just at the doctor for a routine check up. And he picked it up based on her absolute neutrophil count. So as to your liver abnormalities, you might want to check into that as a possible autoimmune problem as well.
I am sure if you were prescribed a trial dose of Prednisone (usually about 1-2 weeks) , (dose usually based on body weight-usually ,15-20 mg, you would feel much better if you do have PMR. Prednisone is a double edged sword; however, it is the only thing that will get rid of your pain. Many doctors consider a dramatic response to Prednisone diagnostic for PMR, and you will be able to do your normal activities.
If it doesn't, it is not likely PMR. There is nothing that will take you back 18 months so don't spend energy being annoyed by something from the past that you can't change. That stress you will be putting on yourself for nothing and stress is an aggravating factor for PMR.
Exhaustion and poor sleep are signs of PMR. But if you are not sleeping well, exhaustion would be a consequence.
"Inflammation " is the hallmark of PMR. You really can't say "only inflammation" because inflammation is what PMR is all about. Vascular specialists do not specialize in autoimmune disorders such as PMR, but his conclusion may very well be correct. Shoulder and hip pain are typical for PMR as well as poor mood.
You do need a rheumatologist. You really must see a rheumatologist b/c they are the specialists who deal in diseases such as PMR, and don't be afraid of Prednisone. It can be a "god send. " While they can cause hassle at times with dosing, they will relieve your symptoms if you do have PMR or another autoimmune disease. No doctor has the right to be annoyed seeing you. He/She is getting paid by you and/and insurance depending on where you live.
Find a reputable rheumatologist and if you can get a reasonably quick appointment, go with his/her recommendation for tests and imaging studies. When you are in pain , your mood and impatience, zero tolerance is par for the course. Only a competent rheumatologist, will get you a correct diagnosis. In the worst case scenario, go to an ER or Accident and Urgence at your hospital.
The continued back pain after multiple fusions, can be from scar tissue. I have a severe scoliosis, but I always decline when a doctor recommends surgery. I saw my father go through torture because of scar tissue.
But get yourself to a rheumatologist as quickly as possible. They know what blood tests you need and what imaging tests to order. Good luck.
PS What tests did you have that showed inflammation? I am glad you have a referral to a rheumatologist. If you have to, bully your way into a quick appointment. And you did not say what part of your body the recommended MRI is for. I assume the liver?
Best wishes for things falling into place. And don't hesitate to ask more questions. We all have PMR and/or Giant Cell Arteritis so many members know as much or more than doctors do. That's what this forum is about; helping each other to learn and for support.💐💐🌷
Hi I actually did end up in the hospital a few weeks back as I was extremely exhausted and generally unwell .. my bloods where flagged up there about the liver abnormalities..the bloods I had done 18 months where to check for rheumatoid arthritis! Which picked up liver abnormalities and inflammation in the shoulder and neck area ..I have already got the ok through my health insurance to see a Rheumatologist but just need a routine referral from my local gp whom I’m seeing thurs afternoon for a double app.My doctor retired not long after my further increased pain ..so to be honest I’ve seen several different doctors since as the clinic was taken over ..which is also been a stress as they don’t seem to care about my history and just want me in and out of the surgery by passing this pain off as my spinal pain ..which I for sure know has never been this bad too make me completely incapable of doing things..thankyou so much for your support and advice I’ll keep posting and hopefully get some answers soon regards susan 😁
Pold is in the UK - so saying she must see a rheumatologist is possibly wishful thinking I fear unless, as she can, the person is able to afford a private consultation and even then they don't always get it right. PMR is more often managed by GPs in the UK and they are generally capable to making a correct diagnosis.
It is also common to find raised liver enzymes in PMR.
That’s interesting as none the doctors I’ve seen have even mentioned this as a diagnosis..presumably due to my ongoing pain from my spinal problems ..As i have previously stated even though I haven’t worked for many years I’m still employed by my company ..who offer private health care ..it’s only my osteopath who has ever mentioned it could be this problem who I’m happy to say it actually a family friend..I’m always reluctant to contact him as he has a private bussiness and at this moment in time I was unable to pay for his services ..But he’s happy to help now I’ve fully explained to him my situation! I have a house move comming up I’ve just been so worried about not being able to manage this alone with my extra pain and costs of a move 😁
Is the move now inevitable? It is very likely that if this is PMR once you start pred the stairs will lose their terror - it did for me in 6 hours: instead of crawling up on hand and knees and stomping down one step at a time like a toddler I was back to normal.
Unfortunately many GPs (and specialists can be no better if you are unlucky) have blinkers and can't see beyond the existing diagnosis if that is one that causes pain and are very unwilling to hear the patient telling them "this is different".
The move is from a 1st floor flat to a lovely bungalow with my own enclosed garden so it’s a good move for me in general..I’ve been in my current location for 12 years it will be sad to leave but the place I’m moving to is very rural which I think will also increase my happiness and my 3 cats will have there own back yard
OK - I just seemed to get the impression your move was being forced by the pain. I hope it isn't TOO rural!
Hi no it’s literally a 9 min drive from where my location is currently and a very good bus service..my location has been great and I’ve loved it here ..but I have very steep stairs and only a small garden at the front ..sadly my current location has gone down hill due to drug problems in the area aswell..I have had previous spinal fusions on my neck and lower back so to me this move could well be better for my health and happiness in general ..thankyou for your concern 😁
If I lived in the UK I think it would have to be in a bungalow - a friend with PMR moved last year and we visited then a couple of weeks ago. I can see why they love it so much! We have a flat in a block with a lift (anything over 3 stories must have one) and the difference here to while we were on our recent tour of the UK is very obvious. My legs are just recovering after 3 weeks of doing stairs multiple times a day.
I understand totally I’ve struggled so much with my stairs but I did love it here for so many years ..I’ve just been stressed about coping with the move with my extra pain..but if I can get a proper diagnosis then I’m sure the proper meds will help ..I’m not a big lover of taking medication but I’m happy to try and ease my pain and live my life as happy as I can 😁
That's why I put a downstairs toilet and shower room in. When I can do stairs safely it's either stairlift if I have cash or I can live very nicely on the ground floor.
EVERY house should have a loo on the ground floor! German houses are built with a tiny but functional loo by the front door - off the vestibule so the kids don't have to run through the house! We'd just moved to a temporary place before coming here when the PMR went mad - and instead of a choice of ensuite upstairs, bathroom halfway up the stairs and a loo in the utility room it was one and upstairs. I could work and eat downstairs or work and get to the loo upstairs - I retreated here to the flat and once I'd recovered from the journey I was fine as there were no stairs (all things being relative!).
My house was built in 1903 so there is a downstairs loo but it's outside and currently has no running water.
Our Pity Me house was built even earlier and there was a drain for a loo at the end of the bit sticking out the back - but some numpty had removed it! Same in the Fram house too - they called the space created a breakfast room! Pretentious I thought - only room in the house you could open a window, because it was falling out! The upstairs bathroom had been a separate loo and bath - and they had knocked them into one. This was a family with 2 teenage daughters - why??????
I don't know why. I was glad for separate toilet and bath growing up.
My next door neighbour put a loo and sink in outside which is great as kids do t have to run into the house all the time. Her us attached to the house whereas mine is about 5 feet away.
We have a small 3-room flat. Instead of a large Italian-size bathroom I had it split to make an ensuite and a separate bathroom. Best way to survive marriage in a small space; separate bathrooms ...
The literature lists well over 80 potential adverse effects of corticosteroids. No-one gets them all, many get none. I have been on various forms of corticosteroid over the last 10 years: with prednisolone and prednisone I have no real undesireable side effects, but with oral methyl prednisolone I had horrendous effects, growing a black beard, gaining a lot of weight and becoming very Cushingoid and developing steroid myopathy. All reversed as soon as I switched to prednisone. I have no sign of cataracts, steroid induced diabetes or loss of bone density.
As the others have said - try the pred if you get the chance. Seeing the difference it can make - it does vary in degree and time of onset but in PMR a high enough dose (15mg usually but possibly up to 25mg to start but you don't stay there) will achieve a minor miracle. There are side effects - but most of them can be managed or avoided when you know how. And this group knows how 
I have previously been on steroids but that was when I was 30 years old ..I’m now comming upto 51 the steroids where for bells palsey of the face ..of which I’m glad to say I did recover from after 4 months or so 😁
I am a person who has anxiety around taking medications in general. That said, I am so thankful for taking prednisone when diagnosed with PMR. Before the diagnosis I thought I was dying! Within a short period of time I had an unexpected weight loss (a good amount!) and couldn’t sleep because of hip/neck/groin / shoulder pain. No pain meds helped. I suddenly needed a cane to get around and could not even get up from a chair without help. Six hours after my first dose of prednisone I put away the cane and had my first good night of sleep in months. My drug side effects were manageable and lessened as I tapered the dose over time. Prednisone basically gave me back my life. I think living with pain as you have with spinal problems and now with possible PMR is exhausting and takes away our joy. I tell people prednisone is the best worst medicine. I hope things improve for you soon.
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