Have found the posts really helpful in understanding this condition. Much improved on 25 mg of Pred, now reduced to 10. Side effects have seriously disturbed sleep pattern, and challenged my patience with husband of 47 years upon whom I am now so dependent.
My background in Chemistry has made me investigate all the info on the net and now feel more in control.
We are lucky in that we have an Endless Flow Swimming pool in a cabin in the garden, in which I feel normal. I also purchased many years ago a vibrating massage mat, which has given me relaxation.
I have been using using a flashy walking stick to warn others I am slow crossing roads etc, but this weekend used a pushchair to go for a walk. Unfortunately, no baby inside......live far away.
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Valnvaughan
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Hi Valerie, just joined the site and your post came up. I live in Hillhead and have PMR and GCA; first diagnosed with PMR 5 years ago now and then along came GCA two and a half year later. I know only too well what you mean about not being able to sleep; it comes and goes, if that's any help. You're doing well to be on10mg. I used a walking stick for a while when I felt unsteady, but a pushchair sounds good too. Lucky you to have a pool, it's good to feel normal. It's quite difficult to try and explain that you're having a really rough time with the pain, because you look normal. One of the things I can find most difficult is when you bump into friends you haven't seen for quite a while and they tell you how well you look. If only they knew.
Anyway just though I'd say hi as we're "neighbours".
Hi Valerie, thanks for your response. A chat over coffee one day would be really nice. I'd prefer not to leave my tel no here, but you can contact me via my email address y.deshayes@yahoo.com. I've got various commitments this week and some next, but it'd be lovely if you get in touch, then we can arrange to meet up. Some nice coffee shops in Lee, and also I quite like The Haven for a cuppa and cake
By the way - when you are unhappy leaving such personal information out here on the public forum you can always use the private message system to contact people.
Click on the person's name and their profile page will appear. To message them just click on message at the top right corner. You can send the message to one person or add other names to send the same message to more than one.
You can also remove things if you change you mind by clicking on the box on the right with the downwards arrow and choose Edit - the post comes up in a box, do your editing and then click on the orange box Edit response - et voila!
I've been on this forum for years - and it still confuses me! Maybe that says something about me but it is the only forum I have such problems with! It's only take a year to get my notifications working anything like properly!
The posts of personal experience of living with PMR / GCA would make a valuable resource if it could be collated. Are there researchers in this field?
I am going to try scientific methods gained from my working life to try to quantify the progress of my own condition. This is probably an indication that I have come to terms with the situation and will make a positive out of it. Hopefully this may help others in the long run.
It will help you in tracking how you responded to various situation/treatments/reductions and may help you avoid making the same mistake twice - but everyone experiences PMR and pred very differently so while comments in response to questions on the forum are very useful they can't always be applied to someone else. PMR also has a mind of its own so isn't too keen on behaving according to scientific rules
Yes, there are a lot of groups working in the PMR/GCA field as well as far more working in the autoimmune field in general. One paper was published last year that was a study of how PMR affected 20-odd patients' lives and members of the support groups are also active as expert patients within study groups.
The northeast of England PMRGCAUK support group has various items which have been collated from posts on the forums and people's own stories, their associated forum has a section where many of my posts felt to be of particular use by others on the forum have been collected together in one place and there is also a booklet which they published this year which does the same in the form of articles aimed at new patients (and not so new ones).
But however much is stuck together, patients come and ask their question without having read it and need an answer to them personally. Because of the 3 forums and the PMRGCAUK support groups there is a framework in place for that - 10 years ago there was only one forum here in the UK and a support site in Scotland and one in the east of England. Five ladies "met" on the patient.info forum - and the charity was born, first in the northeast of England and then, eventually, the national charity was formed. All the charities have medical patronage and we are welcomed as partners by them.
However alone you may think you are - you are not and there is a lot available in the UK. Unfortunately not all doctors are aware of it and some even dismiss it as "Dr Google" - when some of them could do with consulting him!
Consider getting a rollator - you may even be able to borrow one from the Red Cross, I don't know - but they have brakes on for safety and a seat which means you can go for a walk and be sure of somewhere to rest.
If you are interested, there are quite a few people on the forums in the New Forest area though I don't know if they have got an official support group going yet. They have met for coffee I think.
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~Update on PMR & newly diagnosed sleep apnoea~
Recently diagnosed with PMR
Newly diagnosed with PMR
Just diagnosed with PMR
