early days for me!

On 15mg Pred diagnosed 2 weeks ago. I must say still not over the shock of having PMR and on steroids for goodness knows how long. Just pacing myself - resting and exercise.

I want to stay at work because I dont want to have too much time to think about this condition and keeping to a somewhat 'normal' routine is good.

Do you get to the stage where you dont think about the PMR and dont treat it as an illness and just get on with your life?

At the moment, although I am a positive person I feel as though the thought of feeling like this for a few years daunting! I will however get over this phase and just accept it like so many of you have.

Cassie

21 Replies

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  • Hi Cassie, I am afraid PMR is life changing and you do need to rearrange things to fit in with it. It is very much in control sadly. Don't overdo things, if you start to have pain stop what you are doing and have lots of rest.

  • Piglette

    Encourging words many thanks Cassie

  • Cassie,

    You will adapt to PMR, but it does mean changes, life will not be exactly the same as before, but it doesn't stop either!

    You have to adapt to maybe having less energy than before, you may have to change the way you approach work, the amount of exercise you do (gentle is good, too strenuous will leave you exhausted, not good).

    Yes, you do have to rest more - you can't be at 100% all the time.

    You may get some side effects from Pred which aren't very nice, but remember it's the only thing that is keeping the PMR controlled, so you have to put up with them.

    Having said all that, if you remain positive, you will get through it. Try and explain to friends and family about PMR, not always easy, so they have some idea of what you are going through. The problem is, you look ok on the outside, so people assume you are ok! Take care.

  • Dorset Lady

    Thanks for your positive words. I have tried to explain to family - but I played it down not wishing to make a fuss - I think I need to drip feed a bit more info so that they can understand about it more. I am making changes already like cutting down working hours to just a few a week.

    I dont want to tell everyone at work but just my boss . This is hard because I dont want to be defined by this condition as I am a person too. I dont want everyone saying how are you, how are the meds etc. I will prob feel differently in a few weeks when I have come to terms with it myself.

    Cassie

  • "I will prob feel differently in a few weeks when I have come to terms with it myself"

    Cassie - I'm sure you will. It isn't at all easy at first to take on board the fact that we have succumbed to a long-term condition that is not only painful but also can interfere with our usual lifestyle for a while. But although life-changing, at least PMR isn't life-threatening like some of the other nastier auto-immune conditions that afflict some poor sufferers.

    As for your question "Do you get to the stage where you dont think about the PMR and dont treat it as an illness and just get on with your life?" Yes, personally I feel that once we accept we are in this for a fairly long haul, and once the steroids have control over the inflammation and relieve us of much of our pain, we can get to the stage where we feel we are also getting back some control back over our lives. One of the major ways I did this was to research anti-inflammatory foods and include as many of them in my diet as possible whilst at the same time avoiding those foods known to be pro-inflammatory.

    It sounds as though you are already doing many of the right things, including pacing yourself between resting and exercise - you are already in control!

  • "Do you get to the stage where you dont think about the PMR and dont treat it as an illness and just get on with your life?"

    Yes you do - but it does help to accept the "new normal" and to not fight against it too much. That just takes up a lot of energy you can use elsewhere. Once you get the hang of making sure you are on the best possible dose FOR NOW and pacing and resting you can get a lot more done. If you have to work then you may need a bit more pred than if you decided to retire or go part time for example. If you CAN fit a rest into the day you will find you get far more out of the evening and probably more of the day altogether. It's also not a good idea to ignore the warnings of returning pain and stiffness - a flare either due to doing too much or a not high enough dose. And if help is on offer - never turn it down out of pride! Accept it gratefully - it will leave you energy for something else.

    There is a DVD and a booklet available from the PMRGCAUK Northeast support group - the DVD is called "You are not alone" and explains for patients and their family and friends what PMR and pred do to us so they can understand better.

  • Please can you let me know the contact details to get a copy of the DVD produced by PMR support North East as I feel my family have no idea what we go through.

  • Their website is at:

    pmr-gca-northeast.org.uk

    Under Support Us on the blue banner you will find a link to their shop with details of what they have.

  • Hi cassie

    I was diagnosed 2 months ago and feel I am now coming to terms with things having been exceedingly angry at the change in my lifestyle. I was always on the go, walked over the hills with the dogs every morning before breakfast and again in the afternoon, rode, yoga and worked.

    The steroids have worked like magic although I hate taking them but most of the pain has gone and now on 12.5mg. It's the exhaustion and muscle fatigue I found hardest to deal with.

    Personally I feel better if I try to be proactive so have had advice on my diet, went to see a physio for tips on adapting my yoga postures and 3 weeks ago went for my first Bowen therapy.

    My husband is a vet and as there's no scientific evidence was very sceptical, however even he has had to admit that the improvement in my mood has been dramatic and after only one session my energy was much improved. I don't care if its a placebo effect, I'm just so glad to feel more like me again. Interestingly acupuncture which has always worked well for me with various arthritic conditions didn't help with my PMR at all.

    So it's a huge learning curve but there is so much good advice on this site and the most important thing to learn in my opinion is how to pace yourself- I'm not there yet but practice makes perfect!

    Good luck

  • I too was very sceptical at first - as you know I really think it is a good complementary therapy. The proof of the pudding was definitely in the eating - and I really refuse to condemn anything someone tells me worked for them until I have tried it myself.

    After all - if placebo achieves as good a result as a medication (which happens quite a bit!) why take the medication when it has other, less desirable side-effects ;-)

  • Hi Chammy

    Thanks - I am interested in your post as you are a few weeks ahead of me as I was diagosed just over 2 weeks ago and have been on pred 15mg for the same time. I have appointment with GP in 2 weeks. Pred is of course making a big difference but I still have a dull ache at the base of my neck about as big as a saucer and I didnt know whether to put hot or cold on it. When I see GP I hope she says stay on 15mg for a few weeks longer instead of cutting down yet.

    I am still in the 'why me' phase as I like you was active swimming five times a week and walking with the dogs. I think from comments on this site that I may have had PMR symptoms since April when I was diagnosed with frozen shoulder and injections did not have an effect on it.

    Then In August my beautiful white boxer dog suddenly became ill with heart failure and was gone within a few days. I wonder if stress can bring the vicious PMR on suddenly as it did with me especially as my red boxer was heart broken with her pal gone , then she had a cancerous lump leading to an op but thank goodness she is OK now.

    Yes the fatigue is something else but I feel good today despite nagging neck pain that I have reduced my hours at work to just a few a week- the job as a literacy support gives me a focus and makes me feel worthwhile. I could have given up altogther but I am not ready and don't want to told what to do by PMR!!!!

    I will look into alternative therapies soon.

    When did you go down from 15mg to 12.5mg?

    I would be interested to see how you are with that as I will be in the same position hopefully to cut down in a few weeks.

    Hope it's going well with you

    Cassie

  • A lot of people found that stress not only was the final straw that broke their immune system's back and PMR appeared but it is often a factor in developing a flare. It does help when reducing to keep a low profile and rest to give your body a chance to cope with the change.

  • Hi cassie it's week 5 since diagnosis for me. My husband has had lots of medical problems plus cancer and this was the icing on our very unstable cake. I am chairwoman of local runing club, cycling ride leader and attend gym 5 days a week doing a whole host of exercise pilates, body pump, spinning and general stuff. It was my release and the thought of being unable to do it coupled with pain and husbands surgery meant a few very black days.. However, I find with 12. 5 pred I can run again... slower than before but so pleased to be able to. My only casualty is spinning class as a bit too hectic . I had my first bowen yesterday and managed to run 3 miles on dreadmill in gym this morning before my body pump class... If I have to rest tomorrow I will but buzzing so much today. As I can't do what I used to so much I have had to temper my diet too and that is a quite nice control feeling too. There is always bright side to every situation. Hope this is encouraging xx

  • Hi Adnamaxx

    Thanks for your positive words of encouragement. It's great to hear that you can do so much and it gives me inspiration for the future.I hope your husband is making good progress - evrything comes along at once sometimes in waves.

    Did you start on 12.5mg or have you cut down from 15mg?

    I am asking because I have been on 15mg for 2 weeks and I see GP in 2 weeks so I dont know if she will suggest reducing.

    Cassie

    Cassie

  • Hi cassie just saw your reply. I started on 20 then went to 15 after a week then a few weeks on 12.5 and now 10 for 3 days....so far so good. Bowen has definitely helped me and looking forward to next session.

  • I learned after being on pred for a couple of months and starting my taper that I needed to do far less than I had been as prednisone does not heal you, it only controls the symptoms. We all absolutely MUST let our inflamed tissues rest so that they can heal. As has been pointed out countless times on these forums, gentle weight bearing and stretching exercises good, strenuous (even if that is what you are used to) not so much. I have been as reluctant as anyone to accept that I am ill. I don't live like an invalid, but I have learned to pace myself and for every activity I now make sure I have a rest period of some sort, maybe not a nap but certainly a quiet time, or a very easy activity. I think that is one key to successful pred reduction even though at first it was not easy for me to choose this path.

    Oh yes, I have also been trying to pick my battles to reduce stress. If it means I don't listen to international news, so be it. Or go to meetings about local civic issues, well, someone else will have to do it this time. I am also learning to demand more assistance from my housemate. I no longer complain exclusively about tasks that have been left for the (non-existent) maid, but simply observe that I have left something for the manservant to do. It appears to have had a slight effect!

  • Thanks for writing to me - your are reassuring and give good advice about having a different lifestyle and pacing activities. I tried half an hour swimming this week and enjoyed it - I think it was thinking about it that was daunting but when I was in, although I hadn't much energy I managed a few lengths and relaxed too. Afterwards I rested. Yes I must cultivate an attitude where I let others help when I need them too and I am already planning to sit back over Christmas - entertaining the masses not for me this year!

    I take your point about avoiding stress even in a small way and at every opportunity - and yes the news is stressful a lot of the time.

    I expect my GP will want to taper when I see her in 2 weeks but I feel it may be too early as only been on 15mg for 2 weeks and exeriencing neck pain especially at night.

  • Hi Cassie 1208

    I was diagnosed with PMR this time last year and started on 15 mg Prednisolone. I saw my GP after 4 weeks and as there had been some improvement of the symptoms she suggested a reduction to 10mg. At this point I had not discovered the Healthunlocked forum so was unaware of the best practice recommendations for tapering steroids in PMR. About 10 days after reducing to 10mg I started to feel unwell again and all the original symptoms were coming back. I contacted the GP who said Oh dear I think maybe we have reduced too much too soon. She suggested I go back to 15mg and stay there until Easter (3 months). This was the start of my quest for knowledge about PMR and I am so grateful to have found the site and the expertise of others with such wide-ranging knowledge. I am now reducing at 1mg until I get to 10 and then will do the dead slow method as suggested here. I've been a bit up and down over the last couple of months. So I think my message to you is to read lots of the posts about tapering steroids before your next GP appt so that you are forewarned with some knowledge and don't fall into the same trap as me!! I also told my GP about this site and she has said I can reduce slowly according to how I feel and contact her if I need more guidance. She has provided folic acid supplementation and after a Vitamin D blood test last week ( at my request ) the result was 28. She is going to provide Vit D 3 supplementation. I was reading about vitamin D deficiency last night online and notice that sweating is a common symptom which many people on this forum have mentioned recently.........I have been finding walking and going upstairs quite difficult just recently so wonder if the Vit D deficiency might be causing this? Would be grateful for views of others.

    Many thanks

    Linda

  • Hi Linda

    Great advice thanks - as you say this forum is excellent and I will read up about tapering in the next 2 weeks before I go to the GP - it is so good that you share information about your experiences - it can save others going through pain after cutting down too quickly -

    cassie

  • Sorry for late reply! Started on 20mg for 1 week then 15mg for 4wks. Then took 2 wks to reduce to 12.5 and plan to be on this for about 6 wks then go to 10 mg but phase it in over a couple of weeks, listening to my body as I go. GP is happy for me to do it myself having seen her armed with info from this site about various ways of reducing. I aim to follow the "Bristol" reduction method in the hope that overall there will be less yo-yoing of the dose.

    Am waiting to see rheumy but don't anticipate any change to the above unless I get a bad flare up.

    Feel sure that stress lowers the immune system so anything we can do to boost it with diet and relaxation has to be good.

    Hope you'll soon be feeling much better, this weekend I could take my arms back overhead for the first time in months! And just small steps like this feel like a major achievement at the moment!!

  • Well done to arms over head... my pilates class was a nightmare before pred but I can now put my arms up once more without pain x

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