Well, I don't think I will ever accept the condition GCA with symptoms of PMR. I know hate is a strong word but it sums up my feelings for it. Even on a low dose of prednisolone (4mg) my days are limited. Any manual work of an hour or if I am lucky two wipes me out within a couple of hours for the day. At 57 it's not what you want. The feeling of a punch in the face headache. Your arms about to drop off, the sheer effort of moving them wearisome. The rest of your body screaming Your hips, legs and hands all aching crying out for relief. Oh to live life again without these restrictions. But it's just another weekend. Pushing boundaries and being rebuffed by them. One day they'll give and they'll be no stopping. When, who knows but one day, and that's what I hold on to.
The positive thing is spring is coming. The snowdrops are fading the Primroses are flowering the daffodils are in full swing and some tree blossom is out. Yes one has a lot to be thankful for.
Just a post from a tired frustrated not very good gardener.😃
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1Unknown12
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Hi, thanks for your reply. Upping the pred. isn't an option with the problems I have with it. I cannot even blame it on tapering. Its just how its been all along. Perhaps it was just a rant yesterday. Another weekend restricted. Hey Ho today is another day. Pottering only.
I was 54 in 2017 when GCA struck so I do know what it is like to be cut down like that. Acceptance is everything though and self care. Railing against it just add to the tears and remember acceptance isn’t giving in. Sounds like you’ve been treated pretty badly too and are possibly not taking enough Pred.
Even on a low dose of prednisolone (4mg) my days are limited. Any manual work of an hour or if I am lucky two wipes me out within a couple of hours for the day
Like PMRpro it would query your dose.....I had GCA only with no PMR, and although men do get through these illnesses better than females, I took 3 years to get from 80mg to 4mg - and that was with with no flares. I think you are pushing your taper and yourself too much.
I appreciate it’s very frustrating, and at your age you expect to be fitter than you are - but it is what it is.
Accept you have a systemic illness, and that you need to pace yourself. Instead of trying to do one or two hours of flat out gardening, or anything else - break it up into half hours, or even quarter hours if necessary. You don’t have a stopwatch on you - just go at a pace that doesn't wipe you out!
...and increase your Pred a little to give a bit of respite.
Don’t fight the illness, accommodate it..and chill
I like you DorsetLady ! You are practical, positive and down to earth. I am a bit like 1 Unknown 12 currently on 4mg a day and struggling a little but I don’t want toGo up Again on the steroids. Maybe I will stay on 4 mg for a little longer before I even think of reducing further.
I can so relate to all that you say, but I also think you might be under dosing. That headache is cause for alarm alone. How long have you felt this bad? If it was me, I would definitely think I was flaring. If it’s recent I would try the 5 mgs extra Pred for about 10 days then return to 4mgs. If it has been dragging on then I would want a higher dose and a slow taper only when things settled down. As for manual labour for an hour or two, well it’s clearly far too much. I promise that you will enjoy the spring and your garden much more, a stitch in time.
Thank you for your reply. for me pred. has been problematic. These symptoms have been going on even on a high dose. Yesterday I think one can say was just a frustrated rant. I should know better.
I have developed problems over the years, although the Pred worked like a dream at first, I now have Actemra as well, as a steroid sparer. Presumably your doctors are sure of your diagnosis?
Hi , I know the feeling, I feel exactly the same, I hate the fact my body is not behaving, I too have no energy, I’ve become so lazy compared to how I used to be, I used to have so much energy and now I’m lucky if I can clean the bottom part of my house in one go, I keep having to take breaks, it’s the same with cooking and so on.
Can’t wait to get back to normal, but I’m not so sure anymore.
As you say, spring is coming and let’s just see what happens.
Thank you for your reply. If only there was an easy fix to the condition. That magic cure of energy to be able to do what ever you want, when ever you want.Just a day of pottering today still lacking energy. But the suns out and the birds are singing.
I understand those feelings so well myself Never one for sitting down too long then at 52 diagnosed with PMR, then in pain to sit down too long but couldn’t do activities I would usually do , the meds took the main pain but the weakness of muscles , inability to lift , move things , not being able to garden, a few weeds was painful initially , it takes time to accept and to be honest been a lot of frustrations , mixed with covid I’ve never had so much time with me since a child , you do need to vent n I found reading and being part of this forum who understand , you don’t quite feel on your own with PMR, I am now very slowly being able to do more in the garden , n it’s a joy , i had to direct my other half into where to dig that hole to plant , water n fill , my part was to turn it so it was the right position. In the hole , I’ve learnt a lot about myself this last year and can now reflect how i am now stronger mentally, i wish you well on your journey , and continue to share
Oh heck, I was in the same position 4 months ago but am 59. And the big thing ive learned is that if I push against the fatigue, it just gets worse. Look after yourself and don't do too much and it very slowly gets easier.
I too love my garden, but now get others to help or don't do things until I have the energy.
You need to learn to love and respect your body. Then it can heal.
I also can totally relate to how you feel. I am quite a lot older (75) & have had GCA for 5 years now & am on 6.0mg. Before this I was fit, played tennis, golf, walked my dogs, lots of friends round for supper.Now I just get through the day struggling even with the barest minimum of activity, little too much & feel dreadful. I know one should try & be accepting & just go with it, but my goodness, sometimes that is so difficult. But, as you say, the daffodils are out, our garden is slowly springing into bud & lockdown is nearly over. Keep your spirits up!
It isn't easy is it??? I feel your pain, sending a virtual hug 🤗 I do hope you manage to get on top of it. I am new to this and the most beneficial thing I have learnt is this site is fantastic. We can share our experiences, ask for help and shout and cry, all supported by those in the know and who care. PS. I am gutted I can't garden like I could even just last year. Take care.
please don't apologise for sharing what you're going through. you have helped so many of us by telling us how you are feeling , and then we don't feel we are carrying our own burden alone. I can't image living with two horrific diseases, as I struggle with one, so to my mind you are a real hero! I would not even be speaking to people by now if it was me! this horrible bumpy bit will pass, and you've every right to go bang every now and then. we are only human after all. then I count my blessings every day and am grateful it's not worse. keep on keeping on, there's a rainbow waiting for you I promise. hugs, grandmother polly
Just yesterday I went on a walk to see the long eared owls near me with my other half and got caught in the snow and hail. Got back freezing and wet through and suffered for it for the rest of the day. Previous to PMR this wouldn't have been a problem, I would have changed and got in the garden and carried on.
I'm.graually working out I can still do lots of I break it down and rest in-between.
Oh dear you do seem to be having a hard time. However, if you are suffering symptoms to the extent you are then it would seem that your pred dose if far too low and the inflammation caused by the PMR/GCA is not under control and could be doing some harm. I was 58 when first diagnosed and railed against the diagnosis. Now 3.5 year on I have learnt to accept each day as it comes and to manage the symptoms whilst trying to reduce the pred. I'm not there yet, and at present my GCA is niggling again, however I have a good quality of life despite no longer having the energies of the whirling dervish I used to be.
I hope you are able to get some help and find a way to find some peace and go with the flow of your condition.
You've just said what I say every day. Sorry you feeling like this, it is a stupid disease but at least we're not struggling for breath in a covid ward. Keep positive. I know it does end and we will get better. Be kind to yourx
I will be 57 this years and it will be 3 years with PMR. I used to run half marathons, be fit and active and strong. I prided myself in being as equal to men as possible. Valued my strength and not having to ask for help. Well, how the mighty fall! So, learning to live with restrictions. I have accepted I can't run and settle for walking. I too have a lovely garden and love gardening. I am looking for a good gardener and if that fails, will have to tell my husband what to dig up and to split, where to plant , teach him how to prune. I also push my tapering as I hate being on the pred. Are higher doses I can't get quality of sleep which interferes with my daily work, I have concentration and focus issues which is no good since I am a manager. I have tinnitus which i think was caused by the steroids. I have a big thirst and now have to go to the toilet all the time. So yes I want off the pred. However, now at 4 mg, I have so many aches and pains and again it is a struggle in the mornings, I can't walk for more than half hour and I certainly cannot do any gardening. I read the advice PMRpro gave and decided I cannot ignore the festering inflammation any longer. I have taken an extra 5, so back to 9, and in a week I will drop to 5 and from there will gradually taper down. I am waiting for NHS physiotherapy since October last year but will now go for private, so whilst the inflammation is still there, with adequate medication, I can start rebuilding and strengthening the muscles. I have a new rheumy who I will see in a short while and we will discuss alternative medication, pending results of latest blood test results. When first diagnosed, GP told me a year max 😂 I have accepted this is not the case and the journey is up and down and maybe not as quick as I want it to be but I can see the trend is downwards and that is what I hold on to, asking for help on the way. Stay strong and keep believing. You will come out of this
Have you been to the doctor about the thirst and peeing all the time? Those are cardinal symptoms of diabetes - if you haven't already done so, do please get it checked out.
Hi thanks for your post. I'm sorry to hear your tale. What ever happens one soldiers on. As a manager it must be very hard for you some days. Your right about tinnitus and steroids. I hope as the pred decreases things become easier for you. Take care
I definitely can understand your frustration. I have been diagnosed for GCA approximately a month ago. At the beginning it was a relief as after 2.5 months of fever cancer was suspected. But it is really difficult to accept such a chronic systemic illness and it is life changing. Before I had so much energy for work (faculty staff at a University), sport (cycling, running) and much more. Now I have to be very careful not to overdo. I am back to work in home office which works ok as the lectures are online anyway but I notice that everything takes much longer. As many others have said before I also think your pred dose might be not sufficient. It seems that I am lucky to live in Germany as I was put on pred + Tocilizumab from the very beginning and I hope that will help in the pred tapering process. All the best and be sure that better days are to come.
Thank you for your post. Upping the pred sadly isn't an option for me with the numerous problems I have had with it. Like you the various lockdowns have assisted me in doing some things eg walking. No easy answers though. Take care of yourself.
There is one small single centre study on a quite successful treatment of GCA with Tocilizumab monotherapy (without pred) (academic.oup.com/rheumatolo.... I have, however, no idea if that would be an option in UK.
I suspect it might be very difficult to get ethical permission for using it in newly diagnosed patients - what if the TCZ monotherapy doesn't avert the loss of vision? PMR would be a very different matter, and to a great extent the use in LVV. It has a fundamental error too -assessment of response using CRP. It is now known that the TCZ doesn't necessarily stop the progression of the disease process.
Fully agree with the ethical issue- this was mainly meant in response to „Upping the pred sadly isn't an option for me“ but it is clear that pred (potentially plus TCZ) is the way to go.
I think it might become an option however unpleasant adverse effects might be if loss of vision was the alternative. The psychosis risk would give rise to one difficult decision but that should also be manageable with the right medication.
Hi Mr Unknown. I cannot add to all the sage advice that has been offered. I think this forum is brilliant on so many levels and after having listened to these great people, I am in the midst of tapering down from 20mg last June and managing quite well now (I reckon). I did try and push the boundaries because, well, how dare PMR interfere with my cycling, walking and, yes, gardening? But I still do these things ‘within boundaries’ and I’m no longer galloping down the taper trail. ‘Softly, softly, catchee’ monkey’ as Baden-Powell said. But, flippant though it may sound, you write very well; there’s another string to your bow. But you probably know that. All the best.
Take care now and look after yourself. It seems to be a long haul disease and pacing is essential. Steroids are problematic but the disease is very problematic. Being thwarted doing the things you want/need to do is very frustrating but I have found trying to ‘push through’ is a no no. As others say, try and be gentle on yourself. All the best
I have read your post and all the responses. Thank you for all these. I am off to bed knowing that I am not the lazy 'so and so' I feel I have become.
I was diagnosed with GCA in June 25th 2015, the day my life changed. Since then I have had a PMR relapse, developed GCA in all my arteries and now feel like my body defines PMR. I am off the steroids but still weaning off the methotrexate which I took as a steroid sparer.
I had plans for when I was in remission and off the meds. Not turning out like that but I am still here and trying to remind my muscles what they are meant to do before I get called for my 2 new knees.
To all of you who described how it was for you, I wish you well. Thanks for posting.
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another drop
Day 2 of the swap to Hydrocortisone.
