I was diagnosed last year and since being on pred it has restored my mobility which is important to my job in education with children with SLD and CN. I have been able to tapper to 6mg but am experiencing some issues with pain and mobility in my upper body, so will see how the next week goes. I am not able to do my job without full physical functionality as Eyfs is full on and I am 64. However, apart from this condition I am very fit and active and it came from out of the blue. I could not even turnover in bed, brush my hair, put on my bra or get up unaided from the floor, just awful. Like others you have to go through a process of elimination before a diagnoses is reached which is daunting. I am experiencing some side effects and I could eat for England and the 🌎 but my job is just so full on I'm holding sort of steady with only a little weight gain. A bit fluffy and puffy around my face but not sure what is going on inside yet. I would really like the support of others with this condition as I had NEVER heard of it before and don't know anyone who has. So pleased to join a group of fellow people.
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Tuppence55
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If symptoms have started to resurface you may need to go back to 7 or 7.5mg to get it under control. Then wait a few months and try again - you will get lower, just not just yet. Especially since you have a somewhat stressful job.
Hello Penny - pleased to "meet" you. So many of us had never heard of this peculiar illness. PMR???
You will have many questions and there is usually someone on the forum day or night (as we have many 'friends' all over the world) who will listen to your concerns, help if they can and 'be there' for you.
All the best from Constance.
Hi penny, its sounds like you at just tipping over you ideal dose. As pmrpro says you probably need To go back to a previous dose that worked. I am 3plus years in and had to go back to 7mg from 6mg having been at 6mg for 12months. Sometimes extra physical or mental stress can entail us needing more pred for a while. Doing your work certaiy strikes me a stressor. 🌻
Hi Penny, kudos to you for keeping going at such a stressful (but rewarding) job! Like you I had never heard of PMR before I had it but whilst waiting to see a Rheumatologist, my hairdresser actually diagnosed me (her husband had it). I remember well struggling to get out of bed, get up off the sofa and get dressed/undressed. This is a wonderful community for support and knowledge and you need never feel alone with this struggle against PMR. I would say that it affects everyone at more than the physical level. It knocked my confidence when going out (people in their eighties would whizz past me) and my emotions were like a rollercoaster. I think being kind to yourself and finding something to do that relaxes you and you enjoy doing is important - treat yourself. I also found meditation was helpful (I always resented not being quite old enough to become a hippie in the 60's!). Take care of yourself and if you do have to increase the Pred, it's only to help your body cope. There will be an end in sight - I took my last steroid in December 2016 after 3 years.
Some days it is a struggle and some of my lovely children are physically and emotionally very demanding. However, since the pain and mobility have improved I can do most things. The rest I work round. I might have been a bit ambitious in reducing at the rate I have been on, so might have to consider stepping back and increasing for a while and try again after Christmas, (always a mega stress time, at school and home)! Like so many others, I'm concerned about long term use of steroids, but compared to my physical functionality this time last year it's not an option. I had never heard of this condition before and going through the elimination of all the alternative diagnosis that it could have been was stressful, I think this was the least life threatening and damaging that it could have been after they told me what could have been wrong and had to be eliminated first. So, all in all, I will deal with it and with the support and knowledge of this group, I won't feel so alone as I have over the last year, not knowing one person who had even heard of it let alone experienced it.
Please don’t try and reduce too quickly, as you say Christmas is a hectic time in school (fantastic but hectic!). Wait until your body tells you maybe you can reduce by half a mg. Look after yourself x
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