Worried and bewildered

Initial diagnosis of PMR just before Christmas and now on 15 mgs of prednisone .....I am still not sure how I accessed this site but it's been a real blessing in terms of support and learning more about management of the condition.

I woke up one morning and couldn't move ....I live alone and was unable to get out of bed ...I laid there for hrs and felt trapped inside my body .....couldn't understand what was happening .....previous day jogging on the Downs and feeling on top of the world ....eventually tumbled out of my bed and got to see a relief Duty Dr at my practice whom immediately made a diagnosis and referred me as an urgent case to a Rheumatologist ......saw my own GP 2 weeks later and he put my symptoms down to Bursitis and was reluctant to give me further medication.... 3 days later again incapacitated with pain whereby I fortunately was able again to see the relief duty Dr

I have now identified wit so many of you and no longer feel alone ....many of my Questions have been answered but would be grateful for some support on these that follow

1: having intermittent moderate pain during the day should I ask to increase the dosage of prednisolone or take analgesia ?

2 : can exercise do damage when in pain

3: should I give into the fatigue or try and ignore and not rest up

4: can I drink alcohol ie daily allowance when on prednisolone

Will be very grateful for any replies

20 Replies

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  • I'm so sorry you've got this unpleasant illness but you will get lots of support here. How long have you been on 15 mg? Some people get almost instant relief, others it takes a bit longer. Was there a gap in your prednisone when your own GP refused to continue the prednisone? Such an interruption in treatment could be a bit of a setback but it sounds like you've been given medication again. Have you seen the rheumatologist yet? Unless the pain is becoming worse I suggest you wait a few more days at your current level and see if it gets better. If it worsens it's a very good idea to increase the dose and you will get some guidance about that from more knowledgeable people on this site.

    You can exercise but the recommendation is to be gentle with yourself. PMR is inflammatory and you must allow your body to heal and this is best promoted by gentle exercise to maintain your range of motion and a basic fitness level, but if you have been athletic and used to vigorous exercise you should really let up on that for the time being. Walking better than weight lifting, for example!

    Rest as much as you can. It's not a fatal illness but it is fairly serious and you need to treat yourself with some care, as if you had the flu or an injury. As time goes by and you get onto a dose that really does control the inflammation and are able to start slowly tapering then it will be time to look on yourself as in recovery. Just now you are still in the early days. Pred doesn't cure anything, it only manages the symptoms.

    Most of us can drink a little alcohol while on pred, but often our tolerance is much lowered and it is not a good idea to drink much. Prednisone I understand is processed through the liver so that could be a consideration. I think most people who are used to, say, a glass of wine with dinner would say there's no reason why you shouldn't continue if you enjoy it.

  • Much thanks Heron

    Yes the prednisone was stopped as my blood assays were almost normal .....having had respite for 2 weeks .....my healthy body and mind back and celebrating normality again......but then reliving hell aand not knowing what to do or where to access help for this bursitis !!! Being able to see the Duty Dr again I was/will be for ever grateful .....seeing the rheumatologist this week

    I have always been active and my mind tells me to keep going but my body feels tired and you saying although not fatal but serious I will start to be more kinder to self

    I won't feel guilty now wit my glass of wine

    Many many thanks

  • I cannot imagine anything worse than having to give up the pred and go back to that awful pain. You poor thing. Perhaps one day one of these doctors will get PMR and realise what they have done.

    The pred should improve the pain by at least seventy per cent. If it does not a higher dose can be tried.

    I became a total food nerd when I was diagnosed. I gave up simple carbs and gluten as I was told it would stop me getting a moon face. I drink red wine rather than white as it us anti inflammatory, well that is my excuse. I like wine!

    Your doctor should give you vit D and calcium supplements as the pred can affect bone density. You should also be offered a Dexascan to check your bone density too. You could ask for a vit D test as well.

    The fatigue is a symptom of PMR. I just give into it. I used to be very active but now I decided to pamper myself and take like easier. I have given up housework for example. I think I may be allergic to it!

    PMR may be life changing but there are a lot of pluses if you start to do things you did not do before. Tai Chi is good for PMR for example.

  • Thanks Pigiete

    It's heart warming to receive your support as well as reading and seeing other suffers giving and receiving advice, support and encouragement......I know I need to accept this condition and work wit it .....and not over do it.....

    Many many thanks

  • Hi piglette

    Just reading your reply & was interested that you mentioned Tai Chi is good for PMR; I know they have classes at our local gym so think I'll enquire about that.

    Hope you're doing OK

    Mrs Nails 💐

  • I hope you enjoy it.

  • Hello Kitty49

    Welcome to our group & pleased you found us at the beginning of your journey. 💐

    Where are you feeling the pain? Has your GP (Duty Dr) told you how long to stay on 15mg?

    You really do need to pace yourself if you're tired or worse fatigued Rest, Rest, Rest!

    What sort of exercise are you thinking about?

    Oh & yes quite a few of us enjoy a glass of wine!

    I'm back for a Re Referral to my Rheumatologist tomorrow, so just settling down to sleep but wanted to say Hello & Welcome.

    You'll get more replies in the morning & I'll catch up with you later in the day.

    Best Wishes

    Mrs Nails 💅🏼

  • Thanks Mrs N

    How I got onto this site is a miracle as I'm not an internet savvy .....but was desperate for help.....as not much info given by Dr ....just a diagnosis . My understanding of the condition is gained through this group.

    I walk every day for 1 hr with my dog ....no aerobics but thinking about yoga/Pilates and now have read other people's views which is reassuring .....and yes I will give myself permission to rest and try and not feel guilty

    Tears have flown down my face with your quick response. I feel I am now in a place where you and other people understand and know exactly what I am going through .....

    Thank you so much

  • Hi Kitty 49. It's 1.50 am and I am reading the forum posts while having a prednisolone insomnia night and so glad I did because I just wanted to let you know that by finding your way to this forum you will get the best advice from the members with medical knowledge and loads of support from fellow sufferers.

    I have no medical training, but I do know from experience and help from the lovely people on here, that analgesia doesnt touch pmr pain, and exercise is encouraged, but only light and no more than your poorly body can manage. I don't see it as "giving in " to the fatigue, just that this is how it is for as long as it takes and it's your body saying rest, rest, rest.

    It must have been so frightening to wake up on your own not knowing what was happening. There may be a support group near to where you live who could possibly give you more support. I'm sure when everyone starts to wake up you will get lots of help and advice.

    In the meantime, be assured you have friends here who know exactly what you are going through. Very best wishes to you.

  • Thanks Annie-Marie for your encouragement , support and advice ......through this forum I am beginning to understand my condition and also will be more confident in my pending hospital appointment

    I hope you have had a good nights sleep thereafter 2 am

    Thanks again

  • Morning Kitty49

    Hope you feel reassured that you now have a new family of PMR Buddies.

    I'm just waiting for my Meds to kick in before l get up! I've read through the other replies & your answers, l'm glad you're seeing a Rheumatologist soon he/she will prescribe all the additional Meds VitD/Calcium etc

    Re walking your dog, you may find an hour might be too long so you could always reduce it but maybe go twice if that fits in with your schedule.

    Keep warm when your out n about, l was always cold before l started the Pred & used to wear layers, nearly always velour & soft scarves & had to be tucked in everywhere! That improved so quickly after the Pred kicked in!

    I've been having a 'flare' these past months & I put some leggings on one day over my tights & my legs felt supported somehow.

    Regular painkillers don't help with the pain of PMR but you can always try & see if it helps at all, I take other pain Meds as l have other issues.

    Hope today's a good day & the Pred are kicking in & doing their thing!

    I'm sure you'll get more answers as everyone wakes up & starts reading their emails.

    Mrs Nails 💅🏼

    I'm off for a shower now & then to see my Rheumatologist

  • Hello Kitty, you have had some wonderful advice from others but I just wanted to add that there is a very helpful book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' by Kate Gilbert, available direct from PMRGCAuk, pmrgcauk.com. All royalties from sales are donated to the Charity.

    There are also support groups dotted around the country where you can get together with others for a chat and a cuppa. There might be one near you and you will find a list here: pmrgca.co.uk/groups/.

  • It's already all been said I think but here is a link with further links to lots of info you might find interesting/useful:

    patient.info/forums/discuss...

    There is a link at the end to articles about pacing which I'm sure you will find helpful. Also this article on a blog is a good analogy to living with any chronic illness:

    butyoudontlooksick.com/arti...

    Just click on any of the links and the article will open up for you.

    1) you may never become fully pain-free and other painkillers rarely help with PMR pain. PMR doesn't stop you having other things that MAY respond but be careful using NSAIDs (ibuprofen, naproxen and so on) together with pred, they both can irritate the stomach. It might be you are trying to do too much - keep a diary, does the pain come after you felt good and did more than you should have?

    2) overdoing exercise in PMR may lead to a much longer recovery time than you would expect normally - see the pacing article I have recommended. Breaking exercise up into smaller chunks may help - 2x half an hour is better than 1x 1 hour if the one hour makes you ache. But YOU have to work out what YOU can do without payback. The pred is ONLY managing the inflammation - the actual disease process is still ongoing in the background, it leaves your muscles intolerant of acute exercise and they don't recover normally.

    3) see the pacing articles

    4) I do. Hasn't done any damage yet after 7 years on pred...

    Your own GP might be right while being wrong - bursitis is often part of PMR and it needs pred in some shape or form (oral or injections) before it will clear up. Just resting doesn't work.

  • Kitty49 I cannot imagine how frightening to have experienced such a sudden onset of PMR.

    It's all been said above. Take care of yourself, pace yourself, look for and read Spoon Theory. butyoudontlooksick.com/arti...

    Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide - Dr Kate Gilbert.

    Enjoy your good days and still pace yourself. When my energy feels good I do it a little more but pay attention to what my body is telling me.

    I became symptomatic in Dec 2014, was partially diagnose and started Pred in May 2105 and had a definitive diagnosis at beginning of Nov 2015. It has taken me until 4 weeks ago to accept that this is how it is, this is how I can take care of myself and I have let go of things that cause me stress.

    Good luck and I hope you find a Pred level to reduce your pain...

  • Kate Gilbert wrote the book.

    Overnight onset isn't uncommon - in fact I have come across rheumies who don't believe it can creep up on you!

  • What do they think it is if it creeps up on you until you are as crippled as an overnight victim?

  • God only knows - but it'll be like the lady on another forum whose rheumy says GCA pain is typically in your cheek! Really???????? I wonder where some of their ideas germinate from...

  • In March of 2016 my CRP number was 18. (C-reactive protein). By November of 2016 my CRP was at 82! Not saying my PMR snuck up on me overnight, but I will say that I could feel my body going through some kind of weird changes throughout the months between March and November. I have Hashimoto's (thyroid auto-immune), and my endocrinologist referred me to a rheumatologist because she said that often auto-immune disease "clusters". He diagnosed me with Raynaud's in May of 2016. But knowing this, I still felt something else was going on. Finally, in November when I saw the rheumy again and ran tests, sure enough the marker was there for the PMR and my CRP was 82 - jumped up from 18 back in March. So, my hunch was right. There was something going on. I have a lot of stress because I also care for my 90 yr. old mother for over 5 yrs. now. I have made it a point to let others help out also and take things more in stride. This has been a wake-up call for me. I was started on 20 mgs. to start on Dec. 19th, and I am weaning down this whole year until the end of Oct. 2017. Not crazy about that, but I am following doctor's orders. I do feel better on the prednisone. But the fatigue bothered me more than the aches and pains in my joints. I have osteo-arthritis too, so I am used to pain. But the fatigue made me totally dysfunctional. I have more energy now. Also, I developed anemia during the past year. My PCP is working on helping me to bring my iron levels up. I hope you find relief soon. Take it a day at a time.

  • There is no "marker for PMR" - would that there were. Did he mean ESR - which is an even more non-specific inflammation marker than CRP?

  • It was my neurologist who did the in-depth blood work for not only a neuro condition that I could possibly have, or what she suspected was a rheumatoid condition. When the tests came back, she wrote me a letter stating that I had no "neuro" markers, but rather markers more for a "rheumatoid condition". She did not say it was PMR. I didn't mean to mislead. I suppose there are specific markers - or perhaps the CRP that point to different things going on in the body. (Mine was 82). She was astute to pick up on this when I saw her (the neuro) first, before seeing my rheumy. In my family, we have neuro conditions too and this is why my PCP referred me to a neuro also.

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