Reduction

Linda

There is a meeting on the 27th April (pm) in St Peters Hospital. Chertsey with Rheumatologists and a Guest Speaker from PMRGCAUK, with the intention of setting up a support group.

I don't have all the details, but if you visit www.pmr-gca-northeast.org.uk and go to Support Groups. You could email Jeam Lymer for the details.

It does help to meet other people with PMR and GCA

I am in a bit of a hurry, so will just leave it at that for now.

Hello Linda

I'll be at the meeting! Dr Rod Hughes, Consultant Rheumatologist, who is doing research into PMR/GCA, is the man behind it and will also be speaking. It would be lovely to meet up with you if you can manage it. If not (I appreciate you still work), then watch this space!

I also reduced below 5mgs in half mg doses, sometimes taking about 8+ weeks to make the total 1mg reduction, and then I would stay there for another month or so. Although painfully slow, I have successfully managed to reach 1mg, so it seems my body was tricked into not noticing the withdrawal and the adrenal glands were given all the time they needed to return to normal cortisol production. So, slowly does it......!

MrsO

[color=red:80366e912a]Mrs. K[/color:80366e912a] What's this about being in a hurry? Does that mean you can really hurry or that you have a full list and would like to hurry. :run: The first I hope. If so, lucky you.

This morning my must do job was to slice and freeze the bread I made yesterday; nothing too ambitious you notice. But I did that AND changed the duvets from winter to summer. Bonus. :ok:

[color=blue:80366e912a]Linda[/color:80366e912a] nice to meet you. I, too am finding it a bit sticky at 5mgs. and am only reducing at 0.5 a month and I might have to reduce even more slowly if the pain is still a nuisance by next week. Ten days since I went to 5. When I had it first time round my first glitch came from 12.5 to 10 and then all well until 4.5 and again at 1.75. It took three years from 30 to nil but this time it's already 3y.2m. No rules are there? I try not to be disappointed but it doesn't help the mental aspect to be knocked back.

Yes, I agree, there are some interesting characters on here. Well, we deserve a few pluses. Often thought we'd make a good start for a novel and have just read Margaret Forster's \" Can I Help You?\" where all the characters are centred on the oncolgy clinic of a hospital. But they all get to make 3D contact. I think our virtualness would make for another dimension.

Good luck and come back soon. BettyE

Hi again Linda

Just something I should have added to my post. As Mrsk has advised, do contact Jean Lymer first regarding attending the meeting at Chertsey, as I had been led to believe at first that it was by invitation only, ie those patients who have or are being treated at that hospital, but perhaps Jean can pull some strings! :wink:

MrsO

Dear All

Thank you for your replies. Although I do work I have recently cut down to three days and thursday fridays are clear. Yes It would be interesting to go to Chertsey and perhaps you could let me know if I do need an invitation.

I have alwaays been managed by my GP and he has been very good and understanding however I work in a hospital teaching hospital IT systems to users and recently was training a rheumatologist and had a little chat about my condition and he seemed most surprised that I was sytill on steroids. This got me thinking and if I have not manager to get down to 2.5mg by September I shall ask my GP for a referral. I have been fortunate although had this illness for three years have only been on a relatively low dose of steroids and so far have suffered no serious side effects. (fingers crossed this continues).

Thank you all again.

Linda :lol: :lol:

Hi Linda - and welcome! Do pop on more often!

Why ask for a referral at this stage? Your GP seems to have done a good job of keeping you able to work whilst suffering from PMR. The rheumy you spoke to may have been surprised at you still being on steroids after less than 3 years - but on what grounds? I have had PMR for nearly 7 years altogether but have been on steroids for about 21 months as 2 rheumys were incapable of diagnosing it! In the previous 5 years the symptoms waxed and waned and I existed. I couldn't have worked in a \"proper job\" :roll: and certainly not in the NHS in whatever role - I, too, am ex-NHS. I am a translator - I just have to get from bed to the computer, don't even have to get dressed if I don't want to :lol: !

Remember, the steroids have not been a cure, they have managed the inflammation so you could carry on as near normal as possible. You were at a very low dose last year and would have been off the steroids by now probably - but you had a flare. I was at 6.5mg/day this time last year after a good series of reductions but then had a series of flares and am currently working my way down from 10mg/day again after a few failures. Because you are working you pose a bit different problem to the majority of patients - by very virtue of the fact that it is perceived as being uncommon in people under 55, the vast cohort of patients he sees will be retired and they often are able to deal with more disability than anyone who works - if only for the reason that you have to get up and plod on as you put it or, after a few days off you will have your \"back to work\" interview with your line manager. I'm not retired - but on a bad day I don't have to be in an office x miles away by 9 am, I can be flexible. And I am answerable only to me and my clients.

MrsK will tell you - PMR has a mind of its own, it will come, go and maybe come again when it feels like it. Just going to a rheumy instead of your GP won't make it go away any faster. A proportion of patients need steroids at a low dose for well more than 2 years - and you are already on a low dose and know you can get lower. And if he has any thoughts of other drugs - most of the steroid sparers have worse side-effects than very low dose steroids and should be kept for repeated relapses in patients with other contraindications to steroids such as diabetes, osteoporosis and so on.

I really would say keep on the way you are - you sound to be doing really well! This has been a hard and cold winter - and a lot of people have struggled to reduce but sound to be having a new lease of life now spring has sprung!

EileenH

Hello again Linda

I have e-mailed Jean Lymer - she runs a support group in Sussex and is coming to speak at the meeting. Depending on what I hear back from Jean, I plan to contact the hospital's rheumy department on Tuesday following which I will let you know the outcome.

MrsO

Dear EileenH

Thanks what you have said makes sense and is what I had been thinking all along, but after speaking to rheumy it made me doubt myself and my GP who as I said has been brilliant.

Although still working I am just 60 so hoping to retire this time next year. I am a bit nervous about retiring as I dont have any hobbies apart from work and my family, (looking after my mum etc) unlike my husband who paints does the gardening, he also still works also going to retire next year. I actually dont think PMR will go until I give up work and can slow down a bit.

Thanks again for the words of encouragement I will carry on but make more effort to reduce, it is all too easy to stay on the dose you are on when you can do anything and everything. I have been to frightend to reduce too quickly for fear of another relapse.

Linda

Hello Mrs O

Thank you I await to hear from you.

Linda :lol:

[color=indigo:e45dbd8e27]Linda Williams[/color:e45dbd8e27]

[i:e45dbd8e27]Although still working I am just 60 so hoping to retire this time next year. I am a bit nervous about retiring as I dont have any hobbies apart from work and my family, (looking after my mum etc) unlike my husband who paints does the gardening, he also still works also going to retire next year. I actually dont think PMR will go until I give up work and can slow down a bit. [/i:e45dbd8e27]

Now Linda, here is a thought, we need more support groups set up and support groups cannot work without volunteers. You are in a pole position to help - you have PMR.Just a thought and I never miss an opportunity to galvanise someone into something they may not have thought of.

[color=red:e45dbd8e27]BettyE[/color:e45dbd8e27]

The hurry was a re-union at 2pm in my back garden - it was worth it all.

Hello Linda

I dont really think it matters how slowly you go as long as you get there in the end The most discouraging thing is to reduce quickly and then have to go back to square one

I agree with Eileen that there isnt any point in going to a Rheumatologist if all is going well with your reductions Last year my Dr did say when I had to go back up from 4mg to 15mg if the reductions didnt work the next time she would give me a referral if I wanted one but as she looks after me so well I dont really want one

Hopefully you will feel better when you retire I dont think when I was at my worse with PMR I would have been able to work I certainly have been very busy since I left work I had my horses anyway but i joined a Health Club made loads of friends there Started helping with Riding for the Disabled and Im busy every day in fact when my husband retires I will have to change a few things or he will be lonely on his own at home !!

Hope everyone is enjoying Easter and this amazing weather

Best wishes

Mrs G

Hello again Linda (do hope you are looking in!)

Great news - I have spoken to the rheumy nurse at St Peter's who has said you are most welcome to join the meeting tomorrow. :D

Perhaps you could send me a 'pm' with your e-mail address so that I can scan the relevant infor re timing, location etc through to you. It will be some time this afternoon as I'm off out for a walk with a friend now followed by coffee/lunch. Maybe you could also add your 'phone no in case my scanner misbehaves! I've already typed this note to you once before but for some reason it hasn't appeared - it'll probably arrive twice now!! :roll:

Look forward to hearing from you.

MrsO

Mrs O

I am really disappointed I must have had PMR cloud I have thursday fridays off. I work Monday Tuesday Wednesday and the meeting is tomorrow 27th (wed) I will be at work.

I really appreciate the effort you took in trying to arrange this and it wont be long before I retire and can then please myself what days I have free.

Thank you again for all your efforts.

Linda

Mrs K

With regard to suport group I am in Epsom surrey and it is certainly something for me to think about. I hope to retire end of the year.

Linda

Linda - oh what a pity! Never mind, work comes first, and I'm in awe of all you people who manage to hold down a job whilst suffering from PMR. Just keep in touch with this site for any information about a local support group that might be born out of this meeting. Take care.

MrsO