Hi, I have been looking for a support group for a while. I was diagnosed in January 2022. It seems that everyone experiences different symptoms and the medication affects everyone differently. The steroids have never worked for me, they reduced pain in my shoulders but not in my hips and legs. I have not been able to walk outdoors now for two months in case the pain makes me collapse. I can barely stand without huge pain. I don't know what to do to help myself. I cannot go to work, work have been very good and given me desk work to do at home, but I want to get out there. I am a dancer and cannot now dance. So frustrating and upsetting. I am having a private physiotherapist come to the house every ten days to give me a massage which helps a lot to keep me flexible and she gives me exercises to do. The pain moves around, sometimes it is like sciatica on one side, other times it is in the front of my legs like stabbing pains at every movement. I need to see a rheumatologist but although GP has referred me there are no appointments available in the foreseeable future. I am being weaned off the steroids because they cause me horrible side effects, so basically I am left with nothing, no support, no advice and in dreadful daily pain. I know this will eventually go away, my mum had it for two years and my cousin is just coming out of his after three years. I am grateful that it is not life threatening but I want to get on with my life and I feel that I have been robbed of the life I had. I am also a carer for someone and I'm doing a pretty bad job of that now too. Does anyone else have a similar story?
New to group: Hi, I have been looking for a support... - PMRGCAuk
It is possible to have more than one condition. It sounds like you possibly do. You are the first person I have come across where Pred has done nothing at all. I would be doubting the PMR diagnosis - unless the shoulder pain returned with a vengeance. There is clearly something seriously wrong. Perhaps your GP could try Rheumatology further afield ?Mine practices in another town and I was able to get an NHS referral. There is always A&E not being able to walk far without stabbing pains in your legs sounds serious enough to me.
Thank you for your reply. A chap I am in contact with in US had to take 60mg before it had any effect. My GP won't give me more than 15mg because of side effects. I've been trying to contact GP to ask for a referral to another hospital but can't get through. I will eventually get through if I hold on long enough. I can't get to A&E as I can't walk anywhere. I wouldn't be able to sit in A&E for hours on end being crippled with pain. I have looked into going private but the costs are extortionate. It's costing enough for the physio I have who comes to the house. She is helping but it's a slow process.
I'll say it again - your GP is creating at least half the problem. 15mg is the bottom of the starting dose range for PMR, you need the lowest effective dose in the range 12.5 to 25mg. Had he gone about it properly you would probably be on less and have fewer downsides. Cut your dietary carb intake , it may have to be drastically, but it is possible to reverse the drigt toward diabetes. He can give you BP medication - many of us are on something for BP, part of it will be due to the intractable pain.
Can you not see a different GP? And recommend they read the Recommendations for management of PMR:
Hi, well it was two different GPs. One gave me the 15mg dose which she had to look up in a book, then the other one panicked when I was getting palpitations which I had never had before. The ECG was clear but he decided the steroids were not doing me any good so he is weaning me off them. I need to see a rheumatologist but can't even get through to the surgery this morning to ask if there is another hospital I can go to. I would have to get a taxi as I can't walk and no-one nearby who can help with lifts etc.
Hello, sorry you’re in this position. What dose of steroid did the GP start you on, how long were you on them and what were the intolerable side effects?
Hi, I was started on 15mg and GP is weaning me off them because of palpitations and high blood pressure which I never had before. Also they make me pre diabetic. I have been on them for 6 months.
What sort of effect on the pain did 15mg have? I know you say the shoulders were improved but not the hips. It isn’t unusual for people to need 20mg or even higher because 15mg is too low, so if you are one of those, it’ll seem like Pred does not work for you. What dose are you on now and at what dose did the improved shoulder pain start to come back with a vengeance?
Those side effects are common but did the GP not give you temporary BP meds? Some need them until the dose drops. The diabetes/weight gain issue is usually solved by a low carbohydrate diet but doctors often don’t suggest it. There are plenty of success stories on that one here.
Hi, the shoulder pain comes and goes now, it doesn't bother me too much. My leg pain is better today but yesterday I couldn't move around at all, I wouldn't be able to walk outside though for fear of collapsing in pain. I walked to the blood test clinic a couple of weeks ago which is a 5 minute walk but it took me half an hour with a walking stick. I am a dancer, this is not me, it's crippling. The palpitations panicked my doctor because I had never had them before. Strong painkillers don't work on me either. I'm down to 7mg prednisolone now. Yes I have BP meds, and lansoprazole for stomach and alendronic acid for bones. I've also got COPD and taking meds for that. I haven't put on much weight. I actually feel well in myself despite all this, it is just the pain that is so debilitating. Been trying to get through to GP since 8am this morning and keep being told the 'lines are busy, try again later'. I've given up now, got to get ready for my physio who is coming this morning. She can't believe the way I'm being treated by the NHS.
I would check having alendronic acid if you are taking lansoprazole for your stomach as I think they are contraindicted
The pharmacist would have checked that. They rang me when I was prescribed it to talk me through what I was taking and when. I have to take the alendronic acid first thing in the morning before taking anything else. I will ask again though now you mention it.
It also doesn't say that on the leaflet.
No interaction -you just need to take AA at least half an hour before other medication. I took Omeprazole and AA for 4 years with no issue.
Thank you for that. I have silent reflux so might be getting confused with the contraindication of AA with reflux
Yes I think you are, you shouldn’t be prescribed AA if you have reflux issues….🌸
Thank you again. I saw a GP again this morning and, in spite of me stressing that my reflux was causing me huge problems at the moment, he was quite surly when I insisted I wasn't prepared to take AA. As well as thecreflyx tablets tend to get stuck in my oesophogus - not good if the med cause oesophogeal ulcers!! I explained I had stopped taking lansoprazole as that can also reduce bone density. He said I must take it as the pred will be affecting my stomach lining. I asked him why he was so against me having a DEXA scan and was it the cost. He said no, it was availability and what would it help as, if it showed I had bone loss, I would have to take AA anyway. I suggested that as my lifestyle is pretty active, it might show I was OK then I needn't take anything. He agreed to put me in for a scan but added he would let me know if anything changed. I have a feeling I will get notified they've changed their mind!
Let’s hope you’re right on not needing AA - but should push come to shove there are infusions that can be administered rather than tablets-annually or 6 monthly.
Is gaviscon liquid suitable for reflux?
Thanks again Dorset Lady. The consultant who did the endoscopy that found silent reflux recommended Gaviscon and it helped a lot prior to my PMR. Now it hardly touches it. More and more things I eat produce an acid taste foul breath and discomfort. I have today taken lansoprazole again and will continue with it until (if) I get the bone sensity scan.
First of all I have to say that there are two options: either you were not on enough pred or you don't have PMR as we talk about it. And I also have to say - PMR doesn't always go away in 2 years. I had had PMR for five years before it was diagnosed and I was offered pred which was a miracle - but it had not gone away in the 5 years - and actually still hasn't as I have a less common long lasting version which repeatedly relapses.
PMR is not the disease - it is the name given to a set of symptoms which are caused by an underlying disorder so there is a differential diagnosis to be made. One of the criteria for PMR as we mean it is a good response to a moderate dose of pred within a few weeks - a 70% global improvement in symptoms is looked for. Slower or more incomplete responses should trigger the doctor to look for something else.
There is a possibility that what you have is an inflammatory arthrits rather than "just" PMR and that your doctor hasn't got it right - GPs often jump to a conclusion and forget that several things can have a polymyalgic presentation. What were the grounds originally for saying it is PMR? What dose of pred were you started on? What tests have been done? What side effects did you experience with the steroids?
If this IS PMR, then there is no other option for management of the symptoms in the UK besides corticosteroids. So a correct diagnosis is required. I do realise the NHS is in something of a state at present - but your GP needs to get their act together and if you are in as bad a state as you say, I would have thought an emergency referral was appropriate rather than the routine one he probably has used. Triage of referrals will have assessed you as a patient with PMR which many rheumatologists will put at the bottom of the pile as it is usually managed by GPs fairly adequately.
Hi, thanks for your reply. My mum had it for two years, in fact I think she had Giant Cell Arteritis because she had lumps in her scalp and was told she could go blind and have strokes, she was on steroids for two years. My cousin has just got over it and he has had it for three years, he has just been weaned off the steroids.
Is it worth paying to see a rheumatologist for just an initial appointment so you can get a diagnosis, as it appears at the moment you do not have one.
Trouble is, it will probably need imaging and that is expensive privately.
I was thinking she could get an initial feel from a rheumatologist, as it looks like the GP is not giving a diagnosis at the moment. Then go back to the NHS for medication, imaging etc. at least she might get more of an idea of what the problem might be.
Hi, and welcome,
As requested by SnazzyD think we could help more if you gave us a little more info…
like what dose you started on, how long were you on it, did you continue working and caring, both of which are necessary I realise, but you do need to care for yourself particularly early days.
What side effects in particular- we can give advice on how to manage them?
As already suggested you may not have been on a high enough dose for long enough - they seemed to work partially- or you have more than PMR going on.
Thank you for your reply. I don't think I was on a high enough dose but they gave me palpitations which made my GP panic. He put me on an ECG machine and told me to wean myself off the steroids 1mg every three weeks. My blood pressure went through the roof and I've never had blood pressure problems before. The pain moves about, today it is much less and I am walking about the house without a problem, although still aches. Yesterday I couldn't move without yelping. My physio is coming today, she is helping a lot. She has got rid of the pain in my buttocks, it is just in my legs now. The shoulder aches and weakness are coming back now I am reducing the dose. Sometimes I can't lift a kettle of water. This is the same as my mum had, but she was able to tolerate the steroids and she got better.
Your GP hasn't helped has he! Yes, you may have palpitations from pred but stopping the pred isn't always the answer! I have palpitations, I have atrial fibrillation (a/f) but it isn't due to pred, it is due to the autimmune (a/i) part of the PMR having damaged the electrical cells in the heart that govern heart rate. How do I know? They were there long before pred but started after the PMR symptoms appeared.
a/f is common in our age group - I have a suspicion it is probably more common in patients with a/i disorders but it hasn't been looked at to my knowledge.
Your GP doesn’t seem to be a great deal if help…
I can understand you are worried about them , but higher BP and pre diabetes can be addressed by meds and most find they return to normal as you reduce the Pred…but sensibly with enough to control PNR symptoms.
PMRpro has explain about palpitations- and a/f -think your GP could be doing more tbh…including pushing for Rheumy appointment. I know it’s difficult, but it’s you that’s left struggling. Obviously don’t know your circumstances, but if possible I would seriously be thinking about trying to go private for one appointment.
Wishing you the best .
Thank you. The cost of private consultation is too much for me. NHS should be doing more to help me. And now my physio has just cancelled, she's got Covid! She is costing me £70 every ten days to come to the house. I am carer for my teenage grandson who has autism, and he is expensive to look after too. I will keep on to the GP surgery today and try to get somewhere with a referral. Thank you everyone for your help and reassurance.
Three of her visits would be similar to a single consultation with a good rheumy who would then nform your GP whether this is likely to be PMR and how to manage it properly - which would last a lot longer than a physio appointment.
Hi, yes I see that but I was desperate to get some relief from the pain and get some of my life back. I looked at rheumatology at my local private hospital and the charges for just a consultation was £1200, so a lot more than my physio. You have all given me a boost to get something done so I will do some more research and in the meantime I won't stop badgering my doctor. They have left me high and dry with this.
Ouch -that’s a bit high -sure others haven’t paid that much . Might be worth raising a new post and asking for recommendations in your area.
Most people have paid IRO £2-300 max for a single consultation - that is the ballpark for Rod Hughes at Chertsey unless he has gone up a lot! And Rod Hughes at Chertsey is a definite good address.
The trouble is. IF it is PMR, physio rarely helps. It may help the add-ons, PMR itself not.
Thank you, but I couldn't keep going all the way to Chertsey. I have private hospitals here and will have to do a bit more research. It would be worth paying that but an initial consultation inevitably leads to treatments and more cost.
Most good rheumies will add you to their NHS list if appropriate. We aren't necessarily saying you need repeated trips to Chertsey - if Prof Hughes diagnoses PMR he will say so and your GP can then manage you. It is a guide to your GP that you need now.
Can understand you won't want to drive too far, but RH does very often see patients privately first appointment and then transfers them to his NHS list, perhaps you could find someone nearer to home that does the same. As I said previously, maybe start a new thread asking for recommendation and give area you are prepared to travel.
Yes I understand -and as said elsewhere , you do need to see a Rheumy as you are having so many issues. It’s very frustrating, and I agree you should be getting better treatment from NHS,but it is what is.
Agree with PMRPro -you may need to prioritise where your money’s best spent
Even if you get a referral it may mean a long wait. As PMRPro says, the physio appointments are costing you more in the long run than a private Rheumy and I suspect are only papering over the cracks. Likely they are helping spots of myofacial pain such as in the buttocks but not the overall inflammation.Rheumatology departments weren’t in the best shape everywhere before Covid so now it’s even worse, like everywhere else. There hasn’t been any slack in the system for quite some time. Patients are left suffering because GP’s seem reluctant to practice out of their role like they are in a war zone where normal systems are not there, to ease the suffering as best they can. These are dire times but they don’t have the legal or practical support to act like it is, so they just refer onward into a vacuum. Anyway that’s just my opinion.
My GP referred me to NHS physio and they gave me an online zoom appointment, for all the good that was! I wanted acupuncture just to ease the pain. The private physio said she could do that eventually but that my muscles were so tight they were rigid right into the piriformis. She has released that and it does feel much better but now it has shifted down my legs. She said that she can get me walking again and I do believe her. Sadly she has Covid now and can't come until next week. In the meantime I am going to keep on at my GP and tell him he has to do something.
PMR pro is bang on with advice. Please take it. Your GP is simply wrong I think. You need more pred. not less. You can always reduce later if needed but without hammering inflammation nothing will happen. I also think you need to understand that if it is PMR then a massage might help a bit but basically until you stop the starvation of oxygen to the muscles which is causing them to contract and also loading them with lactic which your lymph and reduced blood supply can't correct you are wasting your money. You can't stretch or exercise muscles that can't be unclogged and stay contracted. you will continue like this until you bite the bullet. The side effects can be coped with if unavoidable. It isn't where you or any of us want to be but there it is. Sorry. As for palpitations bisoprolol and ramipril are there to help sort that. Another medication but will help I can assure you. Accept, Acknowledge, Adapt. You will come to understand and take these on board. Stay positive. It helps.
Thank you. Most interesting. I have searched the internet for support with PMR. There is precious little available. There is a support group on Facebook which was not well used until I joined oddly. This is a revelation. So thanks again.
We are it. The FB groups tend to be less well monitored. Here everything we tell you is from medically backed research and personal experience.
you said earlier you just want to get your life back. We all did and some still do, but the reality is that when and if the condition goes into remission, whenever that is, there will be some changes to your physical condition. they may be age related slowing down, muscle related lessened ability, medical changes due to other conditions, weight alterations which now affect you. Whatever they are you need to recognise this and really take it on board so that you can properly assess where you are at any one time. You MUST keep hoping for a good outcome as that frames your overall approach to this condition. If there are things you do that must be done then find a way to schedule these in so that they are manageable as your condition alters, sometimes day to day. You cannot make this condition do what you want. It takes control and that's why YOU have to adapt. IT won't.
My mum was over PMR in two years although the steroids left her with bad stomach problems for the rest of her life. Everyone is different, I am not going to be pessimistic about this. I am a dancer, and want to get back to it, even at my ripe old age!
Just because your mum got through PMR in 2years doesn’t mean you will - sorry.
We all have different circumstances -and variations on a theme.
Positive thinking and determination can do a lot to help. My cousin has just recovered from his PMR after three years. There is a genetic link, so I am being optimistic, no harm in that.
No harm in being optimistic at all -just saying don’t be disappointed if it isn’t true same as your Mum.
totally agree, but, you came onto this forum hoping to find support and informed information. I think you can see you have that in spades. I was a cyclist of some ability. I haven't ridden for 2 years now. I have lost the muscle and stamina and balance needed to do it at the moment. Maybe I can get back to some level in the future, but not now. Maybe I never will. I can't begin to tell you how devastating this is to me but it can't be helped. You should hope to dance again, you can't now. I'm sure you are adapting but it has to be to what you CAN do. If you don't fully accept this you will have a struggle. I said I understood at the beginning and intellectually I did, but until you live with the reality and the truth sinks in you don't fully understand the need to accept it and adjust.. Good luck on the journey.
Yes I have been looking for a forum like this for months. I just chanced upon it looking at the Versus Arthritis info as I also have osteoarthritis in my knees. I can see how easily you lose muscle strength by being inactive. My physio said that she can help me get that back once the pain is under control. Despite everyone's misgivings about me spending money on physio, she really has helped me. The sharpness of it is less than it was. I really do need to see a specialist to make sure it isn't something else or make sure I am on the right medication. It's so dreadful that the NHS is under so much pressure that people can't get to see their doctor. Thank you everyone for all the replies. It wasn't expected. You hold such a lot of information, as I said before, quite a revelation.
I don’t think we have misgivings about paying for physio -I’ve done that myself for OA over the years.
I think what most of us were saying us, get your PMR sorted out by a Rheumy -even if that means paying for it -so it might mean putting the physio on hold for a few sessions. Depends what your priority is -and only you can decide that.
We weren’t criticising-just offering options.
No I didn't think you were criticising. I'm just confused to know what is best to do. The first thing I need to do is ask the GP what he is going to do about it, if I can ever get through. Then I will ask him about going private because he might know someone locally I can get to without too much trouble. I can't walk and can't drive. I lost my partner in 2020 so am on my own with my grandson who has his own problems. I think the shock of that loss brought all this on to be honest.
You may well be correct in that your loss contributed to your illness - many of us had a lot of stress prior to ours.
I do hope you can get a good response from your GP - life is difficult enough without all the rubbish many patients seem to be getting from the people who should be helping them.
It's not just being inactive, though that doesn't help. The pred. actually wastes the muscle. It also prevents you rebuilding it . a double whammy.
I didn't know that, that is even more scary.
I did put this in the last post. It's not scary and some people respond better than others. You just need to try and understand the whole picture before deciding on a course of action, treatment, before trying to do things which may or may not be beneficial. Just be realistic about what you are dealing with, try to understand the process, work out what you can do now and adjust. You need to be sufficiently informed to guide your medics so they understand you and this condition. Go back to your first post and our replies. You know more now. Despite what pred. can do you should now realise how wrong your GP's were. You probably need more pred. to suppress the inflammation causing the pain which is oxygen starved muscles contracting and cramping locking in lactic acid. Unless you have sufficient pred. you won't change this and physio under these conditions will not help and as PMRpro says can damage muscle.
Thank you. I have at last managed to speak to a different GP today. He said that my situation is totally unacceptable and he is going to ring around to try to find me a rheumatologist. In the meantime he is increasing my steroids and my blood pressure tablets (to try to prevent the palpitations I had before) and I have to drink lots of water. Does anyone know about water? Thank you.
finally!!. Well done and also the practice GP who has seen sense. Water is essential. Over the day you need to consume about 3litres. Without sufficient fluids (not juice) pure water best, then your muscles can't work properly.
I'm not good at drinking water. I will have to force myself. I usually put ginger cordial in it which helps my COPD and stomach issues. Pred gave me chronic diarrhoea too which has gone now the dose is lowered, I suppose it will come back now the dose has been increased. Doc gave me a stool test to do a couple of weeks ago which came back normal so I am sure it was the meds. Hey ho, as you say, adapt!
Fluids are fluids - so as long as they aren't high sugar/sweetener options it doesn't HAVE to be plain water - teas and coffee are fine too as lomg as they aren't the Starbuck sort with flavourings and sugar!!!!
agree, but they do have tannin and caffeine. It's a pity you can't have our spring water. Pure as nectar and no chemicals. I also run it through a UV filter to take out any harmful content.
I have decaf coffee and the ginger cordial. Nothing else, oh and a cup of earl grey first thing to get me going in the morning. I'm bad at drinking. Oh and I also drink alcohol free beer when it's hot weather but not even much of that. I will force myself to drink water. Of course it has a knock on effect of needing to go up the stairs more and that is excruciating. I am remaining optimistic and started on my increased pred already. I will keep a note of symptoms and side effects.
You won't necessarily pee more if your muscles need it. Try drinking an extra litre during the day at first. See how you feel.
I am finding though that I need to go more anyway because the pain is all around my pelvic area. However, I get your point and it makes sense. Thank you. This 3rd GP has put me back on 15mg which I started with. It didn't help the pain a great deal then but at least I was able to walk with a stick. I won't be afraid to tell him though that I need an even higher dose (thanks to this group) if it doesn't help when he rings me next week.
try my exercise regime. Number 3 should help your hips. Dead easy, no effort, just lie on back and relax for 30 mins. put on some nice music, Beethoven's pastoral is my favourite for this. You must get the position correct for best effect.
Complex PMR should be seen by a Rheumatologist anyway. Please insist on a referral. What region of the country do you live in ? We maybe able to recommend a good one. They do vary.
Epping Forest District Essex
I am in Epping Forest and am under Whipps Cross. Does your surgery refer to Harlow?
I also got hideous palpitations on starting pred which was checked. Slow breathing and resting while it happens helps, mine goes eventually.
My blood pressure is also slightly raised (for me) but has always been low (prone to fainting) so guess now it's average.
Personally I would write to your surgery listing all your issues and post it by special delivery to prove they received it.
Yes I was referred to St. Margaret's. That's relatively easy for me to get to because the bus stops at the corner of my (short) street and goes right into the hospital grounds. So it would be good if I could go there but they said there were no appointments available. I had a reply from the surgery to my complaint and was told that all their 25 lines were full this morning and I had to keep on trying. That's useless because by the time you get through all the appointments for the day have gone and you are then told to ring back the next day and go through the whole rigmarole again. Horrendous having to sit and wait on the phone for hours not to mention the cost of the calls. Anyway I had my say in a reply to the email, maybe it will get through to someone who will ring me. I can't do much about breathing as I have COPD. I wasn't too bothered about the palpitations but thought I should get it checked. I monitor my own blood pressure and I know it goes up when I am stressed and even more when in pain. I can just about manage to walk (with a stick) to the post box which is opposite the bus stop but I would be doubled up halfway there and back. I wouldn't be able to get to Whipps Cross easily but I am willing to try anything.
I've just made a complaint to the surgery because I can't get through, it keeps telling me all lines busy try again later. I've been on there since 8am and now it's 9.45.
That is so lousy. Your symptoms are far worse than mine were and, for me, the steroids worked miracles. I hope you soon find an answer
I am appalled at your story. I really think the time has come for you to focus on yourself 100%. I know you're a carer, i know you say you have limited funds but you are struggling and enough is enough. Go to the surgery, stagger in and collapse at the reception desk. In my experience there is always a spare appointment for those in trouble. And you are in trouble. I'm sorry to say this too but you may have to be mega assertive. This forum has given you more knowledge than the GPs. Use that knowledge. This may go against your true nature but unfortunately you are going to have to become your own advocate. Drs who don't know the answers intimidate their patients and fob them off. Strong words from me I know but it's based on 30 years of working with them and sorting out their mistakes. ( Me retired pharmacist.). My heart goes out to you. All the best.