Hello to everyone on this forum, I just joined and so am new to this.
Just like to share my experience of my illness and wondered what you think about my symptoms and if its PMR.
About 2.5 years ago I felt really bad at work Dizzy, weak and no energy. I went to the Doctors and was sent for blood tests. These came back with a drop in kidney function and infection so I given antibiotics was referred to a kidney specialist in hospital. My kidney is now OK.
I was taken off Naproxin which I used to take for mild arthritis. I was 52 years old and I work as a selfemployed landscape Gardener.
About 3 weeks later my shoulders started to become really painful I could hardley put on a jumper. I went to the Doctor again who told me I might have Frozen Shoulder and this could last 1-2 years my shoulder pain eased after a few months but was always there to some degree. Soon after this my legs became very painful and I could not work or move easily. The Doctor then sent me to see a Doctor who worked in-between the Hospital Rheumatology Dept. and our Doctors surgery. I was told that he reports to Hospital consultants. He ran loads of blood tests but all came back clear. Also had Xrays of hips which showed mild arthritis. After several consultations he just told to get another job and take pain killers, Tramadol, Paracetamol and Amitriptyline. I questioned him about my symptoms such as really painful feet both feet at same time. Both shoulders at same time. Lower back pain and very painful upper legs. My hands also became painful at times. The pain would flare up and move around my body. He did not seem interested and said it was coincidence that these things happened together as I had no blood markers to show anything so I then suffered for the next 2 years. In the last year I was only able to work about 3 months and would have to time work so I could have rest days in-between so I could cope.
After 2 years I had enough and went back to my Doctor and insisted on going to see a consultant Rheumatologist. I again went through the blood tests which again came back all clear. This time the Doctor listened to me and agreed that something was going on carried out more blood tests again all clear except Vit. D which was low. After some discussion we thought it might be PMR and agreed to trial Prednisone starting at 20mg for 1 week and decreasing weekly by 5mg until stop. The effect was unbelievable I was 90% pain free in 2 days able the climb stairs without having to hold on. Within a few days i began to realise how much this illness had effected me not just physically but mentally I was under a cloud of pain which had made me depressed without realising it. When I came down to 10mg the pain started to return not as bad but was painful so my Doctor increased to 15mg which I seem to be coping with. I am now waiting to see the consultant on Thursday this week and hopefully he can confirm diagnosis so hopefully there is light at the end of the tunnel. I found that even the Consultants did not understand how much pain I was in. There letters to my Doctor would talk about aches and discomfort when i was in severe pain sometimes after work having to crawl up the stairs on my hands and knees get into the bath and then bed to recover and attempt to work the next day. The Doctors seem to rely to much on blood tests and not listen to the patients properly and try to understand you. I still dont have a confirmed diagnosis of PMR so would like to know what you think.
Sorry if this has gone on to long but I wondered if some of you had a similar experience in diagnosis. Any advice would be welcomed especially before I see my consultant on Thursday.
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horas
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Hi Horas, sorry to hear you have suffered so long. My story is similar I was 46 when the classic PMR pain and stiffness started. For the first 8 months my GP issued painkillers and sent me for physio. He had said a few months in that it looked like PMR but bloods were fine, so didn't want to start steroids. After 8 months I was seen by a Rheumatologist who spent 6 months doing blood tests and scans, constantly telling me I was too young. 14 months after pain started she decided to try Prednisolone 4 hours after the first dose I was running up and down stairs, it was a miracle
Hi runrig01, It's good to hear that you are feeling better. It seems that the Doctors are over relying on blood tests and age for proof and ignoring symptoms and patients explanations. I hope you still on the road to recovery.
Hi Horas, noticed some of my message didn't load. Did you have temple biopsy to confirm GCA. I have had temples burning, jaw cramping, tongue pain and spasms keeping me awake at night, slight tenderness in scalp where I have pain above and behind ears. My tongue has ischaemic patches. I had a biopsy in Oct, 10 months after starting steroids but it was negative. Rheumys are adamant that it can't be GCA as bloods are normal and biopsy negative, I have even quoted research that states 4-11% of GCA patients have normal bloods. Now waiting to see a dermatologist to see if they can explain ischaemic patches on the tongue. I just keep hoping one day someone will diagnose
I can't believe how many medics totally exclude PMR and/or GCA just because the blood markers are normal - they obviously don't read anything that they receive! Mind you, I had incredibly high inflammatory markers but still no-one managed to diagnose me in over a year!
Your experience of being 90% pain-free after just two days on 20mg of steroids points to PMR as the likely diagnosis, and the return of pain on 10mg simply points to the 5mg reductions you were advised to do over a short period of time being too much too soon.
It must have been wonderful for you to experience such relief in your pain after 2 1/2 years and I do hope that you will see an enlightened rheumatologist on Thursday who will now get you on a smooth track towards successful reduction of the steroids.
Hi and welcome! It sounds pretty much identical to what I went through for 5 years - I was "too young" at 52 and had no blood markers either. Eventually after it got far worse and I realised after using the internet that it could be PMR. A rheumatologist reluctantly gave me 6 weeks of pred as I was going to the USA and it would probably help a bit he said. Two weeks each of 15mg, 10mg and 5mg. I took the first tablets at 10.15 am after fetching them from the chemist, I went home, collected some lunch and crawled upstairs on hands and knees and sat at the computer to work - the loo was upstairs, taking food with me was the simpler option. Just after 4pm I got up from the computer - and walked downstairs normally! Not like a toddler one step at a time. I was OK at 10mg, reasonable at 5mg - but 24 hours after taking the last tablet I was stuck in bed with the pain and in tears. For the first time my husband realised how much pain I was in. The rheumy ignored the description and said it wasn't PMR and wanted to put me on sulfasalazine. I saw a different GP who listened - and agreed she was happy to say it was PMR and prescribe pred. I had the foot pain too - felt like walking on broken glass when I stood up.
The "special interest" GP obviously doesn't have much of a special interest - the really typical thing about PMR is that it is bilateral, on both sides pretty much equally. The other is that it responds dramatically to a moderate dose of pred - about 70% improvement in less than a week on 15mg pred - stop it and the pain returns to the old level just as fast. A group in Bristol uses that as as confirmation it is PMR rather than another form of arthritis or even something else. Google this paper:
Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis by V Quick and JR Kirwan
It's "free to air" so to speak and describes how they use pred as a confirmation of PMR.
It's not uncommon for doctors to have no idea what self-employed people go through. I'll never forget a friend telling me how the students suggested some long-winded treatment for a joiner - and the consultant said "NO! This man is self-employed, no work equals no income of any sort. Never forget that!" He came up with something that was "only" a couple of weeks.
You will need to be at 15mg for several weeks to get the inflammation under control and then you reduce to find the lowest dose that controls the symptoms - but try to persuade your GP to prescribe enough so you can reduce 1mg at a time, staying for at least a month on each dose. Bigger steps seem to cause many people problems and you risk missing the right dose. A lot of people do better like this - and even consultants are coming round to the idea!
Hi Runrig01, Fortunately I have not had any headaches nor have I been told by Rheumy to look out for symptoms of GCA. Rheumy has told me that I have Cutaneous vasculitis mainly on my hands which the Rheumy has never actually really seen, only photo's of this condition. Hopfully I don't develop GCA. I think it best is to keep pressure on Doctors and question some of the things that they tell you. They try to use he same set of criteria for everyone which clearly is not right and as you say there is a percentage of patients who dont fit normal patterns of illness.
Horas that all sounds horrendous. My experience was completely different - I had sudden onset (woke up one morning in agony and unable to move) my GP took one look at me and diagnosed PMR immediately even though she said I was really too young, Rheumy was not so sure because markers were high from coexisting conditions and he suspected these were involved, but I got relief from pred so they confirmed the PMR diagnosis.
I really hope you get some answers and appropriate treatment asap.
Unfortunately your experience is not usual, as you have found out. Mine is a bit extreme, but does show what can happen if you are very unlucky.
My shoulders started being really painful in Oct 2010 as you describe, but no-one at the GP's surgery thought anything was amiss, a blood test was "satisfactory". When the pain and everything else involved, fatigue etc kept on, I was diagnosed with a frozen shoulder, and treated as such by GP (cortisone injections which helped for a few weeks only) and physiotherapy for 16 months. Despite no improvement, no further blood test or any other diagnosis was considered, nor was referral to Rheumatologist. I had never heard of PMR or GCA at this stage, oh I wish I had, then I would have ensured something was done! In March 2012, I started getting the classis head symptoms for GCA, still no change of diagnosis from GP -"must be trapped nerve from frozen shoulder".
After 6 weeks of excruciating pain, and numerous visits to GPs surgery, I began get blurring in my right eye (another visit to GP - couldn't see anything wrong, and when asked if any connection to head problems, was told NO). Two days later, when sight had gone in right eye, I attended A&E in local hospital, to be told, within the hour, that I had GCA and prescribed 80mg Prednisolone.
Incidentally, I did see a Rheumatologist once in Sep 2012, who despite the fact that GCA had been diagnosed, categorically stated that I had never had PMR and even if I had, then it would be gone by now anyway! Needless to say, I haven't seen him since!
Looking back, I wonder why I was so naive, and believed the doctors, my only excuse is that I was my late husband's carer at the time, and spent more time worrying about his health than mine!
Another two years down the line, and I am learning to live with only one eye, and now have a new GP who is "up" on GCA/PMR and am coping reasonably well, although unfortunately I have lost faith in a lot of the medical profession.
Sorry to rabbit on so, but you do need to be quite forceful, and not just accept what the medics say - as my new GP says, you know your body best! Good Luck, and let us know how you get on. DorsetLady.
Hi DorsetLady, Thanks for sharing you experience. It has given me valuable info into how approach my Doctor later this week. Like you I tended to trust the Doctors I have seen and thought my experience was just a one off. This just shows the importance of this Forum in helping each other by sharing advice and experiences. I have learnt more from this Forum in the last day than from anything I have looked in the past and it has given me some comfort that there is light at the end of the tunnel. I really do hope you continue to improve your advice is much appreciated.
Horror stories make me realise how lucky I was to have a GP who made an immediate diagnosis, confirmed a day later by blood test and pred within hours. I have never felt the need to request a referral to a consultant.
Annodomini, you are probably the first 'text book' case I have seen posting on any forum. Generally speaking it is those who are having problematic responses - in whichever way - who need reassurance and support. Those who follow the perceived correct route have no particular need for them.
I was referred to a rheumatologist because all my blood tests came back normal even though I had all the other classic symptoms. However I was seen quickly and that particular Rheumy just took one look at me and told me 'I know what you've got' and following my initial dose of Pred I was practically dancing after 36 hours, which bore out her statement. My GP said afterwards that although she had seen PMR before she had never seen it without raised inflammatory markers (sero-negative) and had been worried that something else was wrong, but she had now learned something new!
I do hope your journey is as textbook from now on until you reach zero Pred.
Hi everyone, Just to update you now. Rheumy now also thinks it's PMR. I am not sure about his instructions for Pred though they don't seem to be similar with most people on here. He has asked me to take 15mg and 10mg on alternate days for 2 weeks. then 10mg for 2weeks and then 9mg for 4 weeks when I will see him again. If I have a bad day I can take 2.5mg extra above the 10mg he is very worried about side affects and wants to get me on lower dose as quick as possible. He is telling me that it's a balance between side affects and pain and I should expect some of both. I am overweight but so far have not put on any extra weight since I have been on the Pred probably due to the fact that I have been able to return to work as a Landscaper and so am now quite active. On days that I have more physical work I am in some pain but this then clears by the next morning. Before the pred I would be in bed for the next day barely able to move and not return to work for 2-3 days. I am worried that I might reducing the Pred to quickly which seems to a common problem that I have read about on here. I tried to tell this to the doctor but he would have none of it. He is a good doctor and listens to you very well but I am not sure how much experience he has with PMR. I wonder what you think about my treatment plan and if you have any advice I am at the start of what looks like a long road to recovery. Thanks for all your concerns. Horas
It took 18 months for me to be correctly diagnosed with atypical PMR. I have pristine blood work. On paper I am healthy as a horse. Only 5% of PMR/GCA patients have no bloodwork to back up the diagnosis. No one realises how much pain we are in. Naproxen, cellebrex, robax platinum, all those stupid pain killers that don't really work all that well, and a couple of days on Pred and you feel like dancing...or painting your house or cutting the grass etc.
We are responsible for our own health. Educate yourself on this horrible disease. Then do your darndest to find a GP or Rheumy who will believe you when you say you are hurting....instead of rolling their eyes...and don't try and come off Pred too fast. That Quick and Kirwan paper is a sound treatment plan. And you will need to be ever vigilant for GCA. It is to PMR much the same as shingles are to chickenpox. And the whole kit and kaboodle is all a form of Vasculitis.
It is all rather much to take in. Pretty scary too. But you are lucky to have the friends that share this web-site as they have been where you are now and are more than willing to give sound advice and cheer you on.
Slight correction there, rocky. About 20% of patients with PMR don't have raised inflammation markers. Mine have never budged since diagnosis apart from one incident which worried the Rheumy (but not me as I felt I knew what had caused it) and they were back to my normal the following test. So there you are - I am a sero-negative atypical PMR and GCA victim. Those with raised markers are sero-positive.
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