Hi you lovely people ! I’ve now had 4 doses of 15 mg at 4 am ( just because I happened to be awake then ) . I took the tablets with a banana and cup of tea , a little Prednisolone picnic in the early hours 🙂 So definitely a change in the PMR pain and stiffness in both shoulders, hooray ! But I’m waking with a lot of pain in my right shoulder which has very limited range of movement all day since onset in Jan . It’s a different capsular deep seated pain , so I feel that it is an adhesive capsulitis that has been coexisting with the PMR ?? Now I’m off the Brufen 600 it’s coming more to the fore?? Anyone else had both things alongside each other?
Also I’m feeling quite light headed and spacey . I slept a lot in the day on Sunday so maybe a bug ? Easier yesterday but back again same today . BP fine ( I knew that Amazon monitor would come in useful one day !) Is this the Pred?
Sorry for the long post ! The learning curve is long!!
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Romilly2
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Yes the spacey, light-headed feeling will be the Pred. It wears off after a while. I definitely needed 20 mgs initially for PMR, to get proper relief and I stayed on it for about 6 weeks before beginning a taper. Your theory about another condition coinciding with PMR is feasible, especially as it is one sided. I recall having one shoulder more painful than the other. It was the shoulder I broke in the distant past. Pred did mop up all the pain when I was on a sufficient dose. Obviously you will seek medical advice about these issues.
Thankyou! Yes the spacey feeling feels as if it’s related to me starting the Pred . Although my non medical husband has just come in and said you’ve not had enough to eat and made me a large gluten free egg and bacon barm 😂 Must admit it felt good ! I have kept my private appt with the rheumatologist for 7th July , that I made when I was getting nowhere with my gp , so hopefully can discuss where I am at that point .
I would like to consult with a rheumatologist as I'm not responding to the Prednisolone. How did you go about finding one or were you referred by your doctor?Many thanks.
What do you mean exactly by “I'm not responding to the Prednisolone”.
If you clarify what your situation we may be able to help. You may just need a bigger dose, or to amend your lifestyle -have a read through this maybe -
Thank you Dorset Lady, I will carefully read through your information it looks very interesting. My GP has referred me to a rheumatologist because in her own words I am not responding to the Pred - my symptoms are not reducing despite increasing the Pred over several months contrary to trying to reduce it. Hope that clarifies things.
Please do read through - my gut feeling is that maybe you didn’t start on a high enough dose - or weren’t on it long enough to mop up all the accumulated inflammation.
If that doesn’t happen at the get go, then you are forever up the creek without a paddle!
Either that-or you don’t have PMR…
Maybe you could put a précis of what’s happened to date on here (or profile would be better) so we have a better idea -and can advise accordingly.
I witter a lot on here! -it was bestowed on me a long time ago by a previous moderator because I answered a lot of questions.
You will see that PMRpro and MrsNails have Ambassador after their names - similar really.
Honorary titles, but it acknowledges that we give our time freely and (hopefully) give support to those who need it. PMRpro has an extensive medical background.
The admin team (moderators) are part-time employees of the charity -PMRGCAuk.
My GCA is in remission, but the other 2 ladies still have PMR
Seeing side effects of Pred; I've been on 10mg for aprox 20 months & now feel less well than when I first got relief from my PMR. Get migraine type headaches, need to wear sunglasses outside, sometimes my jaw feels a little stiff (I've had my arteries scanned & no inflammation to be seen) sometimes feel extremely tired & have to take a 'nap' for half an hour, balance not at all good, very easily upset & angry, sometimes very depressed. These symptoms come & go in severity, I'm confused as to what they are related to, the PMR or the Pred? I have seen a new consultant recently who says I need to reduce the Pred, but of course slowly so am now down to 9mg & will continue to reduce slowly by 1mg every 6 wks. What are your thoughts about my symptoms please?
Just looked at previous replies -and as nothing on profile can you clarify-are you saying you have been on 10mg since diagnosis? Or did you start at higher dose and reduce to 10mg?
As for scan, when was that done -at outset? If so, even though it didn’t show any inflammation then, if you’ve been at current dose all along it may have allowed some to build up since … some of your symptoms do sound a bit GCA ish… Have you had recent blood tests for inflammation levels?
The tiredness and irritability could be Pred side effects -and the fact that symptoms come and go is a bit odd -is there any pattern to that -for example on better days are you doing a bit more. If so, that can then lead to a less good day afterwards.
I think I would want a bit more investigation before reducing any further …your treatment hasn’t seem to follow the normal protocols for PMR.
Started on 20mg & felt great after 2/3 days, which confirmed PMR then reduced over 2months to 10mg where I've stuck. Scan was done very recently, blood tests show no inflammation. The new consultant who did the scans specialises in PMR/GCA & said he could find no evidence of GCA, but as you say my symptoms do sound a bit GCA ish which worries me, & IF I did have a splitting headache I'd go straight to A & E. When feeling better I definitely do more. PMR aches in my legs first thing vary in intensity from day to day. Maybe there are other things involved. What other investigations are you suggesting? Thanks.
Anything to do with headaches -and obviously eyes (which is what most people worry about with GCA)…
The reduction from 20mg to 10mg was a bit on the quick side -which is why I guess the doctor has heft you at that level for so long… but as I said that’s not the usual recommendation -just wondered why .
I don't think I was getting v good direction on that & of course everyone is extremely busy with the fallout from Covid. I did get down to 8mg but then went back up to 10 mg. Frankly there is so many different ideas about how to lower that I was inclined to see if I could sort it out myself taking in everything I have read, going down v slowly & if I was having problems go back up again. I have more confidence in the person I am seeing now as he specialises in PMC/GCA so am doing exactly as directed.
But really all I want to find out is whether my symptoms were/are 'normal' with PMR & whether the Pred was also causing these problems & if anyone had similar symptoms.
You might get more responses if you raised a post yourself— then everyone would get notified of a new post and those interested-affected would respond,
If you ask a question on someone else’s post, unless people have saved that particular post (like PMRpro and I do with all posts) or happen to come across it, only the originator and the person’s reply you responded to will automatically get notified.
OK, I just thought you would be one of the people who new more than most, which I'm sure you do - I will give it a try. I will also speak with the consultant again as it does worry me.
Very many thanks again. Cornish man! Although I do now live in London.
Thanks, but everyone’s journey is slightly different, so those that have/had PMR can advise whether they have same symptoms/issues as you.. and they will! That’s all I’m saying.
Just for info, I never had PMR personally, I had GCA , so I know more about that illness -so I defer to others on the idiosyncrasies of PMR. 😊
20mg to 10mg in 2 months is quite fast even if the recommended tapers suggest it. Lots of people would struggle at 10mg after just 2 months as if the accumulated inflammation hasn't been cleared out you tend to hover on a borderline between OK and not OK.
And since those symptoms sound to me to be very suggestive of LVV in the upper chest and neck region - they might not see it if they looked at just the temporal artery. I think there is too much suggestion of GCA-type symptoms to ignore.
'The temporal arteries were entirely normal on both sides ....' the axillary arteries showed normal (so checked under my arm pit area)..... with no evidence of large vessel vasculitis' 'In summary ... no evidence of active GCA or large vessel vasculitis and therefore stick with the steroid reduction plan.....'
I might have a word with the consultant again or maybe the symptoms I have are due to something else.
When I was first diagnosed my CRP was 42mg/L. March this year it was 1.9 mg/L.
“maybe the symptoms I have are due to something else”.
If that’s the case, then as I said in reply elsewhere, further investigation need to be actioned…..so please follow it up. Good news if it’s not GCA, but theres obviously something not right.
I had no sign of LVV on a very late PET-CT done when I was on a relatively low dose of pred - just I had had jaw claudication, sore scalp and thigh muscle claudication for a couple of months originally though at a stage I didn't know the half of what I know now! - but I was unable to get to 10 and below for about 4 years. I did eventually get below 5mg for over a year and then had a major relapse and since then I've not managed 10mg for more than a short time. Now I have started on tocilizumab so we'll see - but my relapsed PMR has needed over 15mg for some time for me to be able to function (I was a sole carer, not functioning wasn't an option!).
There are major differences between patients - and any rheumy who won't admit that is in a different world from us. There are probably at least 4 distinct versions - a short one, a moderate one and an extended/relapsing-difficult one that splits with low dose and higher dose longterm requirements. The latter tend to be associated with younger patients and ones who weren't diagnosed for a long time - and they are also very difficult to show imaging evidence of. They may resemble something else - but no evidence of that something else can be found. It is a minefield!!!! But we do now have a few very curious rheumies who are very interested in working with patients to improve our care.
Thanks for getting in touch. I think I now have a very good consultant Rheumie who understands a lot more about PMR than the last one who's speciality is LUPUS. I'm 73 so not a younger patient although am/was reasonably fit, but this PMR has been dragging me down, if that's what it truly is/was. Anyway I'm going to try & check everything out. This all started with a swelling of my wrist, carpal tunnel, which I have had before, but this time seemed to spread! I also had a problem with a nerve in my right elbow which I have had x2 steroid injections for. That consultant referred me to a neurologist just to check things out as I have a small tremor. He says everything appears quite normal for my age but am having a precautionary MRI on my brain. So will be able to rule a number of more scary things after that I hope.
Am I right in that you were implying you had LVV? Not nice.
…and I bet if most used 10% reductions (round to nearest 0.5 mg) over a 5 week period from 20mg downward there would be much fewer flares and discomfort.
Pretty sure you are right there! Prof Mackie discovered the other day that there are rheumies who set off on one of these daft tapers and when it fails just go back to the beginning and do the same again.And again ... The expression on her face was priceless when we laughed at her comment "But surely they adust it?" Like she does ...
What DOSE are you on that you are not "responding to"? That is significant. If you aren't responding to 25-30mg with a 70% improvement in symptoms overall, then by definition it is unlikely it is "just" PMR which is defined to some extent by a response to a moderate dose of pred. It COULD be GCA or it could be an inflammatory arthritis with a polymyalgic presentation.
If you indicate WHERE you are and how far you would travel to a good rheumy we can suggest options!
Thanks for reply, First diagnosed in Jan 2020. I'm currently on 10mg Pred and have been trying to reduce to 9mg for six months however my symptoms increase (shoulders, elbows, and wrists) so go back to 10mg for a month, then try again. 'Not responding' is my GP's definition. Following discussion with Dorset Lady I have now been referred to a local rheumatologist next week. Can you suggest what I need to ask him?
Not "not responding" - it is "needs more pred at present". Really not the same thing! It took me over 4 years to get below 10mg.
Who are you seeing? In York? I think for a first appointment you need to see what they are like - no point asking questions if this is a person who won't engage with their patients. They may not want to express an opinion without doing some tests of their own - I don't imagine your GP has done much? My first session was a detailed history, physical exam, sent for imaging and bloods and given a 6 week taper of pred to carry me over a trip to the USA. The second was less impressive - different doctor, exactly the same procedure and then he admitted he hadn't a clue (was a GP with a special isnterest) and the Boss said he didn;t think it was PMR. Maybe it isn't - but a couple of top people in the field can't identify anything else it might be!
If I were you I would assemble some crib sheets so you know what your answers are to questions THEY ask you and some bullet pointed questions YOU want to ask them. But really - until they have an idea of what THEY think - difficult to predetermine what to ask.
After my difficulties getting a diagnosis and having unbraided markers , I just googled Rheumatologist near me ! Both the Beardwood in Blackburn and Beaumont in Bolton came up . You could see the profiles and book online a slot , not even a phone call ! Confirming email etc . It used to be BuPa then Nuffield and it’s now circle Health . All very efficient thus far . £200 on the day for consultation only .Will report back !
It's better to have too much detail than too little. I took your advice about searching for a rheumatologist and now have a referral for next week. Thanks for your help.
I think we have to be as proactive as possible, even though it’s exhausting enough just coping with symptoms etc and life in general! This forum emboldened me to do ‘ something’ as I wasn’t getting anywhere and going downhill fast . It will still be a rocky ride even with an appointment but it’s a move forward . I’m going to do a timeline and bullet points and practice what I’m going to say so as not to waste the precious appointment 🙂 Good luck with yours 👍
That sounds great value to me, Romilly, if means you don't have a long wait. Some GPs used to arrange a rapid referral, but I'm not sure that they do that these days for anything other than symptoms which might mean you have cancer...so not applicable in situations like ours. One of our best GPs does three days in our surgery and two in the local Private Hospital. He's brilliant, but of course he only has ten minute appointments and it is very hard to get a slot with him, he's so booked up. In the NHS a first referral appointment time is usually around 40 minutes. You will get that, at least, with a private consultation. Good luck. x
Query rotator cuff injury when you see your Rheumy. The rotator consists of 4 muscle, etc and as PMR impairs the oxygen supply to your muscles then it needs watching. There are exercises etc that might just help - but I would want to know what it is before going down that route as you are on pred.
Yes for my sins I’m a retired Physiotherapist, was useless at diagnosis of myself in the first 5 months as I’d never heard of PMR in my 40 years ! In my defence I never really worked in MSK medicine. Over the past few months my shoulder anatomy and current trends in rehab has become an obsession, but until I got to the underlying problem (PMR ) any rehab was useless. Now it should be a clearer picture. I also want to add that sadly the other 7 therapists that I saw , 4 Physio’s in two countries ( one of whome was a specialist shoulder physio in Liverpool) , an osteopath, a chiropractor and a sports therapist, NEVER mentioned PMR. This is terrible now I’m better informed and I fit the profile exactly 🙁 Anyway onward and upward !
Not very impressive is it!!!! I have yet to meet a healthcare professional in my local hospital here in Italy who hasn't at least heard of PMR when it is mentioned - and every single physio has been brilliant about it!
A recent MRI proved me to have 2 partly torn tendons in my right shoulder. I felt at least one of them happen when I picked up a bag of groceries in the early weeks of undiagnosed PMR.
You may well have picked up some nasty injuries while trying to cope.
Gosh as of there isn’t enough for you to be managing 🙁 At least if you have a diagnosis it’s a step in the right direction! I’ve been struggling for almost 6 months and yes there’s not only the trying to manage trauma but the gradual instability caused by disfunction of all the muscles around the shoulder. I’m starting a slow gradual strengthening and stability programme with my good old theraband , baby steps 🙂
Everybody is different - I find that being light headed and the feeling of floating is caused by taking Omeprazole as they occur before I take the Prednisolone. Are you taking anything to reduce the acid in your stomach? If so do you take it before your 'early hours picnic' (like that term!). My lightheaded feeling lasts most of the day and sometimes all day. How long does yours last?
You might not need the stomach protection.....................try this instead - a pro-biotic yoghurt with a teaspoonful of manuka honey in it. Just before you take your pred.
Were you given the 'add ons' as I call them or 'just in case' when diagnosed and started on pred?
Thanks, unsure what you mean by 'add ons' or 'just in case'?
I've read about taking yoghurt and honey. Is there any evidence to show that it protects the stomach sufficiently well enough to counter the acid from the Pred?
Think jinasc means VitD/Calcium supplements, a PPI (Omeprazole or the like), Alendronic Acid for bones -all mentioned in my intro post…..and many find yogurt sufficient-depends if you have other issues or meds to consider.
Hi, no I’m just on the Prednisolone. I’m not experiencing any stomach problems as yet as I’ve taken with a banana ( not sure if that’s up to the mark!) Didn’t get any add ons . I think my gp has zero knowledge after the fight I had to get the Pred. Never actually’ seen’ the GP . Eventually she just did a prescription on Friday ( see previous posts) and even that was wrong . Gave me a months worth at 15mg a day . No tester week or follow up appt or instructions to use . I would have been completely out at sea if it wasn’t for this group! Will see what the Rheumatologist says next week
the supplements, Vitamin D3 (and add vitaminK2) are not prescribed by your doctor. You buy them over the counter. You need them to protect your bones from a side effect of pred...which can make your bones weaker...it interferes with the bone-making process. I have increased my dietary calcium, others take calcium supplements (but don't overdo the calcium intake...I am sure you can advice on here about calcium supplements.)Hope you find the rheumatologist on the ball.
I have Cacichew prescribed to cover me whilst on Budesonide. I used to take D3 anyway, which I bought over the counter, along with B6. Having had a small stroke six years ago, due to a slight narrowing of a tiny blood vessel in the external capsule of my brain, (the hub), I'm wary of too much calcium so rightly or wrongly, I take one of the two tabs prescribed. .
I think one is almost always plenty, especially if you have a reasonable diet with dairy etc in it. Otherwise you do need to see how much you are getting.
Absolutely PMpro, I had my bone status checked in April as part of RA blood test and it was normal, so I'm happy doing what I am...it all gets so complicated and with so many pills with their dos and donts we could easily get confused with them! I now get my husband to help me when I'm topping up my weekly am, pm and other pm tablet containers. The second pm is my Thyroxine which I take in the very early am. Shouldn't grumble, I count myself lucky that my various ailments are catered for so well with our NHS. I'm not sure I could afford all the meds without it. Take care, the sun has come out here at the moment in spite of the rain that has been forecast. Knip
I stood there in front of my fridge earlier with four and a half thousand euros worth of medication in my hand!!! 3 months worth of tocilizumab/RoActemra. Wouldn't have had the chance in the UK - I do hope it works!!
It was persisting it down when I set out this morning - it slowly lessened thank goodness as I had a fair walk with just an umbrella! Feet in sandals did get a bit damp! But the expedition did go quite well really ...
Yes the cost of medication is something that a lot of people in the UK don’t really think about . I lived in the USA for a year and collected my Type 1 diabetic daughters meds and blood testing carrier bag of stuff every month for 500 dollars a time , thankfully reimbursed. When I asked what do people do who can’t afford this and the pharmacist just shrugged. 😩
Asthma inhalers for example - in the UK some patients treat them as if they were disposable despite the fact some of them cost nearly £100, And it all adds up ...
Yes I already take D3 and K2 for many years now aside from recent events with PMR . Having read back through a lot of old posts as I’m a newbie think it also looks sensible to have a DEXA scan at the start too to get a baseline of bone density!
I didn’t have a tester week and was given a months supply of 15mg like you and an appointment a few weeks later to see how I was doing plus another blood test. I would say a bone density scan is also a very good idea
I would say that if you are not having any problems then look at the side effects of Omeprazole in the common ones can cause aches and pains just like PMR.
Please always read the leaflet that comes with your prescription. I learnt the hard way - did not need Calcium resulted in Pseudo Gout.
If your seeing a Rheumy then ask for a full spectrum blood test. This test covers all the minerals etc.
Do let us know how you get on with the Rheumatologist. Normally the GP deals with PMR and a referral to a Rheumy is only in complicated cases or GCA is involved.
Could your right shoulder pain be bursitis? I had it in both shoulders, my right was worse than my left. I had X-rays and a scan to determine that it was bursitis. I was given exercises to do but they made the pain worse so I stopped doing them and eventually it disappeared on its own.
Could be . But it’s very reminiscent of a left sided adhesive capsulitis that I had on the left side 10 years ago . Now the PMR symptoms are lifting it will be easier to assess !
I’v reduced to 10mg have had shoulder pain and spaced feeling. Not too bad. Another fractured vertebrae is killing me. Taking oxycodone 2 x day until back settles. I know it’s addictive but needs must. Im on riveroxaban for blood and am now seeing rhumi physio and heamotologist. Riveroxaban is known to thin bones 5 years they’ve had me on it just found out i need not be. Lots of drugs cause thinning bones. I spoke to a top pharmacist he said get to the lowest mg to do job I’m so glad I’m having a revolution if I hadn’t done my own research I wouldn’t know. I’ll update. Have a good day
Hello Romilly, I find that I feel light headed, spaced out, jelly legs etc. for a large part of the time, especially when I am reducing the pred. dose. Oddly enough it is more noticeable now I am on a lower dose. However once my body has adjusted I feel far more normal (?) again, so for me at any rate there is light at the end of the tunnel.
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