Fed up

[Lynylou57]

Fed up and totally confused have been on Prednisone now for 3 years started at 30mg been up and down after flare ups now at 10 mg after slow tapering but always in pain every day felt ill 3 years now I often wonder if it is PMR and not something else see my rheumy in October but I don't know what to say to her anymore they are the professionals not me my mobility is getting very poor now lose my balance a lot oh too tired to type anymore sorry

[Longtimer]

I sympathise with you as I am exactly the same......never believed I would feel so ill for so long... I hope you find some answers...🙏

[Lynylou57 in reply to Longtimer]

Thanks longtimer your words mean a lot

[PMRpro Ambassador]

If 30mg of pred didn't give you significant pain relief then it MUST be questioned whether it ever was PMR.

Tell us a bit more about your symptoms - do you have night time pain for example? If so when? I realise it is hard - but we can only make suggestions when we know a bit more.

And I would be telling my GP I wanted a second opinion. Quite firmly.

[Lynylou57 in reply to PMRpro]

Hi PMR pro I am constantly in pain I've had to have a bed guard fitted to my bed to pull myself up my muscles are so weak I use a stick to walk because of balance issues can fall asleep just like that not safe anymore to look after my grandchildren anymore 😞 I'm only 59 but feel like 89 my memory is terrible . when I was diagnosed , with PMR over 3 years ago after taking the pred I did have a week of less pain that's why they diagnosed PMR I have all the symptoms yes but the symptoms of many other things too which is why I'm confused and just had enough now.

[PMRpro Ambassador in reply to Lynylou57]

Other things respond to pred so that is no guarantee that PMR is the correct diagnosis. You need to see a rather better doctor - where are you?

[Lynylou57 in reply to PMRpro]

Uk

[PMRpro Ambassador in reply to Lynylou57]

Where-ish?

[Lynylou57 in reply to PMRpro]

Lincolnshire near Lincoln

[PMRpro Ambassador in reply to Lynylou57]

Maybe someone can recommend a good doctor in the area. Would private be an option? Just wondering.

[Lynylou57 in reply to PMRpro]

Maybe can't go on like this much longer thanks for the advice and kind words much appreciated.

[Angiejnz in reply to Lynylou57]

Sorry to hear you are having such a tough time. I've got pmr and had two failed spinal fusion plus a massive spinal tumour (benign thankfully) and am constantly in pain. I don't think it matters why bits hurt, dealing with ongoing pain is dreadful. I take so many pills I rattle, but that's the only way I can get through tough days. Sending positive vibes and hugs from down under in NZ

[Lynylou57 in reply to Angiejnz]

Thanks Angie so sorry you're in a lot of pain too bless you all I do now is take one day at a time and be thankful I'm here I have 11 grandchildren number 12 on the way and a great grandchild due in August I want to be here for them I'm only 59 hope you keep well thanks

[Angiejnz in reply to Lynylou57]

Yeah I'm 53 so not ready to be decrepit yet. I had leukaemia 28 years ago and part of the treatment left me infertile which broke my heart but my second husband has two sons and I've now become the utterly favourite super gran to Evie who is 14 months. She is such a joy and it's a huge blessing that's happened to me when I never expected it, me a granny. Pain only takes up the space I give it, I am an expert in distraction and life is flipping great when my odds of survival to this age are 1 in 10s of thousands. It can be wearing but we have to keep going because there's more laughing to do, more love to be shared and this pmr lark will end. From the amount of weight I've put on I can respectfully say keep your chins up xx

[Suet3942 in reply to Angiejnz]

You are such a positive person Angie. Bet you are a super gran. Xx

[Angiejnz in reply to Suet3942]

We have our own little mutual adoration society going on. She's so much fun!!

[Sandradsn]

Sorry to hear you are in so much pain still.I would book to see a different GP and get another opinion.I had to do that.You can't carry on like this.Are you having regular blood tests?

[Lynylou57 in reply to Sandradsn]

Hi Sandra I am supposed to have regular blood tests for inflammation levels but never happen last one rhuemy did year ago my 6 month appointment is late I rung her secretary last week saying I should have had my appointment December she apologized and has sent me next available appointment which is 1st October.My gp should be checking my bloods every 3 months but doesn't I'm not the sort of person to complain really but think I need a kick up the bum

[Sandradsn in reply to Lynylou57]

I think you need to complain ,or you'll just get lost in the system or get overlooked.My husband has been waiting 6 weeks for a appointment for a consultant.He rang the hospital just to enquire 🤔and then gets a letter the next day!!

Sometimes you need to give them a prod,I know they are so busy but you're in pain!

[Kcartney103 in reply to Lynylou57]

Sometimes we just don't t have the energy to fight it and we get further 'down' and that requires more energy to get back up. It is a vicious cycle. I hope you get some answers very soon Lynylou57.

[Lynylou57 in reply to Kcartney103]

That's exactly how I feel like at this moment you're right thanks

[Singr in reply to Kcartney103]

You are so right. We do get exhausted by the fight to get decent treatment. It should not be a fight and especially when we are at our lowest. It's like the cruelty in a way. I've asked our charity/helpline if they would consider advocacy services. I feel I lose the will to fight from time to time. After having a second opinion today with a new rheumy I realise the fight was worth it. Can someone help you negotiate these doctors and appointments etc. You've been looking after the grandchildren. Isn't it time they helped look after you.

[piglette in reply to Singr]

Hi Singr, one thing that that is a plus for the NHS is that we do not have to fight for financial support for medication and treatment too as it seems people in the US have to. I cannot imagine what it must be like when you are feeling really ill to have to negotiate your funding as well as treatment. Having said that I did have to apply for funding to have a new hip, well my GP did!

[Longtimer in reply to Kcartney103]

I heartily agree....the fight takes it out of you...

[PMRpro Ambassador in reply to Lynylou57]

I think you do need to be proactive in getting blood tests done. piglette on this forum has an arrangement with her surgery - she sees the nurse and they decide what tests to do! Your GP is not going to recall you for a blood test - even mine here in Italy doesn't and she has far fewer patients to follow than a UK GP does. If we go up there she will see we are due to have creatinine checked for our anticoagulant therapy - but now we are able to phone and get prescriptions directly to the pharmacy it is up to us to remember to remind her. All you have to do is discuss it once to get it approved - and then make a blood appointment with the nurse in most practices - GPs seem to think taking blood is beneath them though most of them are hopeless at it anyway!

[piglette in reply to Lynylou57]

As PMRPro says I just phone up and book a blood test every three months. Just ask for ESR and CRP and see what happens. I am sure if I did not make the appointment I would never have one. I think we have to be proactive to a certain extent as doctors do not have the time or inclination to monitor us. They only know there is a problem when you contact them. They can always say no you do not need a blood test, but I doubt they will.

[caterpillar]

I am so sorry you are feeling so awful... if it was me, I would be asking my doctor to run as many tests as possible (I am sure Poly Peeps on here, who are far more knowledgeable than me, could suggest some) .. also, ask for a referral to a pain management group?

in the end I went into my doctor armed with the tests I wanted, the drugs I wanted, and the referrals I wanted, thanks to friends who were nurses and told me what to ask for, which was after two years of back & forth to the GPs and terrible pain... gentle hugs.. it is such a dark place to be when you are in pain and have no answers.... xxxx

[Lynylou57 in reply to caterpillar]

You are totally right but it's hard I get muddled at appointments I need more confidence or I will die because that's what it feels like thanks for your help.

[Longtimer in reply to Lynylou57]

I know what you mean....dizzy/weird head.....at those times I have taken someone with me. When I see GP I have pointers written down..it's hard to get appointments, and only 10 mins......need all the help we can get!😕

[Angiejnz in reply to Lynylou57]

I plan my questions and make sure they see me write their answers so I can quote them!! It's my body and I expect the time to be given to me to get a full hearing and proper full responses. Of course I can only control my side of the conversation but I can also sack idiot doctors and move on to find someone who suits me better. You have that power too, don't be afraid to use it. And no more talk of dying, use the frustration to power your resolve, get the action you want even if you have to sit on the floor and refuse to move. Been there done that and it got a brilliant prompt reaction and healthy respect afterwards. In fact my husband laughs at my antics and warns people not to push me, for their own safety. You can be that kind of person too, it's lots of fun seeing people not know what to do with me 🤣

[Lynylou57 in reply to Angiejnz]

Thanks going to give myself a talking to lol be more positive thankyou to everyone for your replies

[Angiejnz]

Fake it til you feel it works too 😁

[Singr in reply to Angiejnz]

Yes, tried that one and ended up in bed, knackered and set back. I think you have to take the good when you get it. Pre PMR I could always push past things and had a very positive, motivated outlook but I realise PMR condition can't be pushed like that. It is what it is. I think we all experience it differently.

[Longtimer in reply to Singr]

PMR to me means right now..Painful. Miserable, Restrictive…..Like you say...it is what it is....

[S4ndy]

Hi, just gonna add my observations on how I am. I am 56 been on steroids since March 16. 30mg start dose which took out 70% of my pain. My blood tests always show elevated ESR and CRP levels. As I reduced steroids I was getting more and more pain my gp kept putting me back up. In the end he referred me to a rheumatologist. Over the last year I have been able to reduce (following Dorset Lady's plan) but some of the pain got worse. I began to recognise that it wasn't PMR pain (that felt totally different). I already knew I had osteoarthritis in knees, shoulders and lumbar spine but this pain was worse. Rheumy ordered MRI and found there was disc problems with protrusion onto the nerves hence the pain. So continued lowering pred but treating the osteo/disc pain too. Had injection to help right shoulder. Then when I got to 13mg I got pain in my upper back between my shoulder blades. I had mentioned to rheumy that the most painfree I had been was when I was on diclofenac for kidney stone. So spoke to gp who wanted to increase pred. But I suggested I tried a few days with diclofenac suppositories. He agreed. 5 days later no pain. Had blood test and inflammatory markers had gone down. Chatted this over with rhemy who agreed I should continue to reduce Pred but add in diclofenac suppositories as and when I got a flare up of osteo. He examined my back and noticed that I had a lipoma at the site of the pain. I explained it has always been there but recently got bigger and sometimes gets inflamed. I had put this down to Pred. He doesn't think its anything nasty but wants to MRI the whole of my spine in six months time when I have hopefully been able to reduce the pred more.

I am writing this to you to illustrate that even if you have a diagnosis it may not be 100% "just" PMR there could be other stuff going on. There's no doubt in my mind that I have PMR as that pain and stiffness is distinctive and bi-lateral. But there are other things going on that pred helps to mask. I found it helpful to keep a pain diary to show my go and rheumy which means you can talk about the different pain you experience.

So I am on Pred, have lidocaine patches for my back, diclofenac gel for my shoulders and knees, paracetamol and amitryptaline for back/nerve pain and I also use CBD oil. I also have the option of using diclofenac suppositories for a few days if the pain flares instead of the gel. So you see it can be very complex where pain is concerned as everyone is different. Hope you get a regimen that works for you soon xxx

[Charlie789 in reply to S4ndy]

Thank you S4ndy I found your regimen really useful I now know what I can try for the different areas of pain as just painkillers from GP and tubes and tubes of Voltarol Gel doesn't always hit the spot and so expensive the between the shoulder blades pain is very bad and tiring and I sometimes feel like my ankle bones are collapsing where there is hope we all struggle through thank you to everyone for their helpful suggestions

[Lynylou57]

Thanks S4ndg you are right best wishes to you every one here is helpful thanks

[Tonylynn]

Have you had a blood test for Lyme disease. It can mimic PMR.

[Lynylou57 in reply to Tonylynn]

No what is that

[Tonylynn in reply to Lynylou57]

Several years ago I was diagnosed by my GP with PMR and given prednisolone. The rheumatologist was not completely sure of the diagnosis and suggested psoriatic arthritis. Fortunately the symptoms (very stiff in the morning) subsided and within a year I was off the steroids. Then symptoms returned and this time I asked the GP to test for Lyme disease (Cause by a bacteria transmitted by tic bites) and result was positive. Two months of antibiotics and never a problem since.

However, I was lucky, the effects of Lyme can be very severe and can mimic autoimmune diseases like PMR.

(I belong to this forum on behalf of my wife who has GCA)

[PMRpro Ambassador]

"There's no doubt in my mind that I have PMR as that pain and stiffness is distinctive and bi-lateral."

I don't think it is even as simple as that. PMR is a term for a set of symptoms - but there are several potential underlying conditions that could cause it. In S4ndy's case she does have identifiable causes for other problems but the fact that diclofenac, an NSAID, makes such a difference might not only apply to them. A rheumatic disorder called ankylosing spondylitis can produce peripheral symptoms that can be identical to PMR - except any back pain may appear much earlier in the night. Otherwise it is so similar that even experienced PMR experts sometimes don't see the difference immediately. It responds to pred at the usual PMR doses and can even cause symptoms that resemble GCA so closely that top GCA experts are convinced. The difference comes when attempting to reduce the dose of pred - and problems arise. And it responds quite well to NSAIDs.

So even when the symptoms are apparently PMR - maybe not?

[pakien]

Know how you feel, After 4 Years down to 14mg of Prednisolone, I have never been Pain free,When I started on 20mg all I could tell the Rheumatology Doctor was I could do more 70% than before I started Prednisolone. Like yourself Fed up with it all.

[PMRpro Ambassador in reply to pakien]

Did he not consider it might not be PMR? A poor response to pred and great difficulty reducing should trigger that sort of question.

[pakien in reply to PMRpro]

No typical PMR-GCA symptoms, ESR 125 CRP 96,I could not lift my arms over my head for long,I was in Tenerife when it started and had use of a Pool but my arms would just not work when trying to swim,I also had Jaw Claudication, I would wake up in the night and have to change the Sheets I would just break out in a sweat for no reason,All that stopped when I started Prednisolone. Thanks for taking an interest.

[PMRpro Ambassador in reply to pakien]

You probably have something more akin to GCA or LVV (large vessel vasculitis) in which case 20mg probably wasn't enough in the first place. And some LVV responds better to other drugs.

See the Fig 1 in this paper - it is easy to see what they are saying - the rest is a harder read but very pertinent to anyone with crossover symptoms who doesn't respond terribly well to pred:

academic.oup.com/rheumatolo...

[Valentina1]

Hi I havnt been posting for a while but I want to say that come what may I am not going on preds again. My last 6 months have been hell. Disorientated quite unable to walk a straight line hair falling out and lip problems which have resulted in hospital. I have reduced as fast as I could and as of 2 days not taking the preds. Yes I am struggling but at least I have my brain back and my lips I feel are improving . I don't think it is imagination.

6 hours sleep amazing I have been existing on 2 to 3 with breaks . I have not tolerated preds well at all. I am also on Warfarin and my INR up and down 1.9 to 4.9 in a day that's dangerous. Am up showered and hair washed head clear body aching . Ill manage. Best of luck