My name is Dee and I've just found this website today and as I was only diagnosed with PMR by letter last week from my Rheumatologist I am very naive about the condition. I was put on 10mg Prednisolone before the diagnosis and quite honestly it hasn't helped me that much, it's just lessened the pain slightly although in a previous letter it was requested that dosage should be increased. Of course that letter arrived the day AFTER I had an appointment with my GP!...typical!
In the little bit of research I've done about PMR I have read that it is quite rare to have it in your leg(s) such as I have.....is there anyone else out there that have it in their leg(s) too? Having read that I also read about GCA, I have been having headaches and sore scalp for months now but have never mentioned either of them to my GP or Rheumatologist because I did not know that it may be relevant. Now I'm wondering whether to make another appointment with GP to tell him about it, I don't want to seem like a hypochondriac!
I hope that you all managing to enjoy this gorgeous weather we're having, at least we are all getting a healthy dose of vitamin D!!
Dee
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Dee29
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Hi, I too suffer with pains in my legs, as well as in my back and shoulders. You may well need to be on a higher dose of prednisolone as 10 mg is quite low and this should help the pain more.
I have back and shoulder pain too but had put that down to existing Spinal problems which has gone on to leaving my right hand back muscle in permanent spasm. My Rheumatologist has requested that the dosage is put up and I suppose I will have to get that sorted out soon with GP although I have deep reservations about it after reading some posts on here about the side effects of higher dosage Prednisolone....I will have to talk that over with my GP I guess.
Leg pain, sore scalp and headaches are all included in the list of GCA symptoms. I really think you should contact your GP asap.
Higher dose pred isn't 15 as opposed to 10mg which is far too low to achieve much as a starting dose anyway. Higher doses in the context of GCA means 40mg and above. And whatever the side effects, none of them is worse than the potential ultimate side effect of GCA: irreversible loss of vision.
Yes I understood from reading about PMR/GCA that they were the symptoms of GCA and was worried enough to make an appointment to see a GP yesterday (I only go to the doctors if I really have to). He has put me on 20mg dose of Pred which I have started today, hopefully it will get rid of some of the side effects that I have. I think they are being cautious with the dosage due to other drugs that I take such as Morphine 60mg twice a day. The GP said that the 20mg should sort me out....fingers crossed eh!!
If it is GCA then 20mg is a low dose - and what your GP should be doing is contacting the local rheumatology department to arrange an emergency appointment so an expert sees you immediately. GCA is beyond the average GP.
Welcome 😀👋🏻. I’m no expert, just a fellow PMR traveller. My PMR started in the back of my legs and went to my shoulders a few weeks later. Sometimes it’s in my hips & sometimes in the back of my neck. At one point it felt like my thoracic spine was tethered to the tissues covering it - acupuncture sorted that out. So, my personal experience, and from what I’ve read on here, it’s a crafty mobile SOB of a condition, that can pop up all over the place. Every day can bring a surprise! You’re definitely not a hypochondriac! Wishing you well with your journey. Lots of people to support you here. Xx
Thank you for the welcome and for your story of your travels with PMR. I may of had this condition for a few years but because I have Osteoarthritis in both my shoulders, my spine, right leg and left elbow along with Tendonitis in right shoulder and left elbow I also have had my Spine fused and came out of the operation with trapped nerves in my legs so I just thought that this was why I have been hurting for so long.
I am so glad that I have found this Forum, knowing there are people out there who are travelling the same journey and are there to support others is a huge comfort/relief xx
My PMR started in my legs & felt like lactic acid that comes after a lot of exercising. The problem was that it didn't go away! I later got pain in my shoulders, neck & upper arms. Then later again sore scalp, headache & unable to eat in the mornings due to jaw pain ( GCA). You need to go back to your GP today if possible, as you could lose your sight.
Thank you for the advice, I did make an appointment to see a GP yesterday evening and he has upped the Pred dosage to 20mg now, hopefully that will help me as he says it will.
That sounds very very painful for you! I do not have it affecting my hands or heels but have it in the other parts you mention, I think that my other conditions have masked it for a long time now, it's certainly taken my Rheumatologist long enough to diagnose it although she did suspect it from the start.
Exactly piglette very hard to know what is what isn't it, but I have never had pains in any of those areas before this - my PMR does seem to be atypical so is not playing to the 'rules'
Same with me - before PMR I was running 5K 3 times a week. If you think about it, 'they' say that 'they' think that PMR is caused by your immune system attacking your body and steroids stop your immune system from working (and/or your adrenal gland) - so a lot of 'things' may be down to a reduced immune system??? Just a we thought in the middle of a sleepless night. Sunrise in Sheffield 4.53 - it is 5.00 with me
Hi Dee, just wanted to say that PMRpro & friends will give you reassurance, the facts & support throughout. Hugely helpful. Hope the GP is helpful if not see someone else!
Thank you for your welcome and I am certainly finding out that support is here!
The GP was very helpful (thank goodness!) and he said that my new dosage of Pred should sort out the symptoms of GCA although fortunately I only have headaches/sore scalp and slight blurring of eyesight now and again but that could be down to the fact that I have Dry Eyes as well.
When I still had a lingering ache behind one eye when on 40mg of pred, I was put onto aspirin as well which got rid of ache. If the new dose of pred doesn't relieve the symptoms go back to your doctor straight away.
Hi Dee, does your GP really know about GCA? A lot of GPs do not. 20mg should at least be doubled if not going up to 60mg. You also need to see a specialist not a GP only. As PMRPro says you need to see someone NOW. If it is not GCA all well and good, if it is GCA you do not want to lose your sight.
Hi Dee. I had most pain in knees and back of thighs for many months affecting mobility. Thwarted GP diagnosis and symptoms not recognised as PMR until upper body, neck and shoulders were affected. Several other members have started with lower body symptoms, so perhaps it is not so unusal but just unrecognised by GPs?
I too had early scare re GCA and went to A&E following strange sight episode. They were quick to respond and also followed up at stroke clinic. it was fortunately a red herring. They did say if it happened again to go straight back. So I would suggest, even if only for piece of mind, that you do have it checked out. Let us know how you get on.
That must of been so scary for you and I'm glad that it turned out to be a red herring!
I did get checked out yesterday by a GP and he upped my Pred dosage to 20mg and said that it should help with the symptoms of GCA/PMR... I hope he's right and that I won't have to go on a higher dosage!
Dee29 If your head/sight symptoms don't stop or get worse and you can't see your doctor right away go to your nearest hospital emergency department. It's better to have a false alarm than to risk losing vision.
Welcome Dee. When I first had pmr I had it in my neck to start with, then shoulders and thigh and pelvic area, so much so that I couldn’t cross my legs without terrible pain. I couldn’t bend down, get out of bed on my own or move my arms. You can get it anywhere. 4 and a half years in I am now on 7.5mg after suffering a big flare in February. Everyone’s journey is different and if I had had access to this site, I think I could have managed the illness a lot better. At least you have found us in the early days. 🙂🙂
My PMR started in my legs and shoulders 3 yrs ago. Started on 20mg Pred and the shoulders got better straight away. Pain in thighs and hips continued, better in the morning after Pred, but returned in the evening. I started taking my Pred in the evening instead and woke up pain free, pain returned only after 9pm. PMR pain has mostly gone now, left me with muscle weakness in left thigh and hip, for which I have received Physiotherapy. Reducing Pred slowly, currently on 6.5mg.
Think you might need a higher dose to clear out the inflammation. I was stuck at 10mg for about a year when reducing, pain came back every time I tried to go lower. You just have to accept it is going to take a long time.
I can sympathise with your not wanting to seem like a hypochondriac. I felt exactly that, in the months leading up to my diagnoses which was an enormous relief to me.
All your symptoms are relevant. Any to do with the head, eyes and jaw are vitally important as you need to be alert for Giant Cell Arteritis. I agree that you probably need a higher dose of Prednisalone at present to achieve the maximum benefit. Please research PMR and GCA on this site and other sources such as Kate Gilbert’s comprehensive book. This is a disease where we really need to be proactive in the management of it. There is a lot of ignorance about it, even amongst the medical profession. Stick with us and let us know how you get on.
Yes my legs are my biggest problem but down to 3mg at the moment. I find they are made of lead when I walk anywhere and I certainly couldn’t break into a trot if a fire broke out!
Hi Dee, l cannot add much to all the information posted already, but l had a lot of pain and stiffness in my legs with PMR, l could hardly bear to stand up.l also had pain around my hips,arms and shoulders. My GP sent me straight away for an urgent blood test which showed l had a lot of inflammation.l was very fortunate that my doctor acted very quickly and l was diagnosed and given steroids within a few days.l too think that you need a higher dose of steroids,especially if you have symptoms of GCA,which needs dealing with very quickly.l would see your doctor again and you certainly are not a hypochondriac. Welcome to this very helpful forum and l wish you a good outcome when you visit your doctor.
I have just been reading your post and all the replies, and I’m not sure that you have been hearing the very sound advice from the experts, especially PMRpro. She has stated a few times here that if you have GCA then your GP is not right to say that 20mgs is enough. There is a real danger of loss of sight if the inflammation of GCA is not brought under control. There has been a lot of work done to try to educate GPS and hospital doctors about the dangers because too many people are still losing their sight from GCA. The advice is usually to go to A&E and get yourself checked as a matter of urgency as GCA is not usually understood by GPS. And you need urgent attention.
I appreciate that this advice is hard to hear and act upon, but I felt obliged to point it out to you so that you can look after yourself. I have been a member of this forum for many years and have benefited so much from the expert advice here. I have learnt far more here than from any of my 4 rheumatologists and GP. The most important thing I have learnt is that the doctors often know far less about theses conditions than the people on this forum!
I do hope that you seek expert advice as a matter of urgency.
Welcome tonthe club. I was diagnosed after having pain and stiffness in both hips and thighs. Had some neck/ shoulder stiffness but mainly upper legs affected. Sounds like you needed a bigger dose of prednisolone to manage the symptoms. Definitely need to seek further advice about possible GCA symptoms.
My pmr started with pains in my thighs ,hips and arms making it unbearable to turn over in bed,get out of the car and climb stairs.I started on 15 mg of pred and within 2 days the pain had reduced!
Thankyou Dee,l am sorry that your mum nearly went under a bus,the ramp definitely should not move,that is dangerous. It was nice to be by the river,there was plenty of things going on,sorry you missed most of the dog rescue display,l did not see it at all. I live in Houghton Regis,but often go to Bedford ,l love the river, l grew up in Cambridge and really miss living near one.l am sorry that you have a lot of pain,l am lucky that the 3mgs,of steroid seems to work for me,l am supposed to lower the dose but when l do the pain starts flaring up again within a few hours. The swelling or ‘bump’ on my lower neck does not seem to change or go down unfortunately.l hope you are well too,l did feel tired today after helping out on Saturday at the carnival and then going to the River Festival yesterday,the weather was lovely but very hot. All the best Dee,l am pleased your mum is OK,thank goodness you were there with her xx.PS,l think this post is going on after the posts five days ago,l do not know why,must be my l pad playing up!
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I do not have it affecting my hands or heels but have it in the other parts you mention, I think that my other conditions have masked it for a long time now, it's certainly taken my Rheumatologist long enough to diagnose it although she did suspect it from the start.
Does anyone else have problems with pain in knee with pmr?
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