Benefits

Yes exactly the same when I started steroids Was running around everywhere Didnt sleep a lot but could have got up at 4am and cleaned the house !! Glad your reduction plan is going well hope it continues unfortunately mine isnt going so well this time Thank you for your offer to help with allowances Having had to fill in forms for a relative with learning difficulties I know how bad they are !! I remember particuarly the one for disability living alowance one but not fondly !!

Sounds so good to be improving within hours. That was what I was expecting but it took about a week before any benefit started. I still get legs aching after I have been walking but it soon wears off. I just wish my GP had been more on the ball!

Best of luck with the recovery, and yes, it is a wonderful website. I was overjoyed to find it and find that my suffering was nothing compared with some of you out there.

Hi Froggygran and amazing to hear that you have reduced as low as 7.5 from 20 after only 2 months and are still feeling good. I, too, felt very high on commencing steroids, and, like Mrs G, could have cleaned the house into the early hours!

That's a very kind thought of your's to help out anyone having problems with benefit claims - I completed the forms for Attendance Allowance for my neighbour last year...it seemed to take an eternity.

Do hope your reduction continues to go smoothly.

hi Mrs O, Sog and Mrs G,

Thank you for your encouraging replies.I;ve been trying to answer you, but not being very computer literate it's taken me a long while and I;m not even sure I'll be able to do it again!

I hope you will soon be feeling much less achey (is that a word? it looks wrong) and on lower doses of Pred.

The hospital lost my last blood test and then the phlebotomist was stuck in the snow so I am at last going to reduce to 5mgs tomorrow.(fingers crossed, hope it works

Thank you for your interest

Froggygran

Hi Froggygran

I'm really interested in your comment about benefits. As a fibromyalgis sufferer, I had been getting high rate mobility and high rate care but after my latest renewal in February, I was granted high rate mobility indefinitely but the whole care component was taken away as they say I can use adaptations etc. I've now been diagnosed with PMR and need help with everything, from brushing my hair, getting dressed to having meals made for me. I didn't want to appeal the decision in case I lost it all! Would you have any advice for me?

Thanks

PoppyB

Hi Froggygran!

What a useful person to have around! My only experience of filling in those awful forms was when my husband had cancer 17 years ago. We sent them off and got a phone call a few days later because he hadn't filled in one or two bits - in fact because he didn't think they applied to him, all we really wanted (or needed) at the time was the badge for the car.

Lady from benefits: You didn't fill in the bit about requiring help with preparing meals. Can you cook a meal?

Himself: Well no, but ...

Lady: then I'll tick that.

Himself: but I've never been able to anyway!

There were a few other similar discussions and the upshot was that he received the full whack of disabled living allowance!!!! Apparently at the time not enough people were applying for it in Scotland and they had all this money going begging! Makes up for the fact I didn't get any with PMR - I didn't ask as I didn't think I'd qualify.

And about your reaction to steroids: the first time when the consultant allowed me to try steroids I was on 15mg for 2 weeks and 10mg for 2 weeks and was really well having responded within hours. The 5th week I went onto 5 mg and was OK-ish, just the odd ache and pain but nothing to before. After 2 weeks at that I stopped (that was all I'd been given) and was back to square 1 within 48 hours - I never got this nesting feelingof wanting to clean everything BTW, but that more like me) :-)

We'd probably all say be very wary of reducing that fast or, rather, in such big jumps. Go back up if the pains come back and ask for some 1mg tabs so you can go down from 7.5mg in smaller steps. You shouldn't have a problem with very small doses of non-enteric coated pills, i.e. 5mg of coated pills (the coloured ones) plus 1 or 1.5mg non-coated tablets (white ones). An alternative way is to take 7.5mg one day and 5mg the next, back to 7.5 for a day, 5mg the next. Or even 2 days 7.5mg, one day 5mg, repeat. Then try 1 day of each if that works OK over a couple of weeks. Oh yes - and take it easy the first week or so of the reduction process until you settle down.

Good luck with the reduction,

EileenH

We'd probably all say be very wary of reducing that fast or, rather, in such big jumps. Go back up if the pains come back and ask for some 1mg tabs so you can go down from 7.5mg in smaller steps. You shouldn't have a problem with very small doses of non-enteric coated pills, i.e. 5mg of coated pills (the coloured ones) plus 1 or 1.5mg non-coated tablets (white ones). An alternative way is to take 7.5mg one day and 5mg the next, back to 7.5 for a day, 5mg the next. Or even 2 days 7.5mg, one day 5mg, repeat. Then try 1 day of each if that works OK over a couple of weeks. Oh yes - and take it easy the first week or so of the reduction process until you settle down.

Good luck with the reduction,

Ive certainly learned this the hard way. Have just finished tabulating the reductions during my second and ongoing episode and the difference between them and the first time when I was almost glitch free clear after 3 years is obvious. This time I encountered more pred. side effects and persuaded my GP to let me reduce quickly. Am being more sensible this time and, fingers crossed, learning to work round the side effects. Eileen's schedules are so clearly explaind and a great help to many on this site. Good thing she decided to change career. If she'd finished med. school we would have been the losers.Best of luck.

I am not sure I,ve got this quote system right. Fingers crossed again.

Eileen. The oat re-inforced bread is rising ( I hope! )

EileenH[/quote]

No,I didn't get it right. How do I highlight the bit I want yo quote without the whole quoted post coming up. Hope it's clear that the first paragraph is Eileen's, the rest mine. BettyE

Betty - I've never done this so this is just a test for me.

[quote][quote:43342a2277][/quote:43342a2277]

Miracle if this works

MrsO

Sorry Betty I'm useless but just thought I'd try as I'd never thought about it before. Won't try again and clog up the system but rather wait for one of our more technical friends to advise us! I pressed the Alt and q key at the beginning, highlighted a couple of lines, clicked on the \"Code\" box and then pressed the Alt and q key again.....wrong!

MrsO

with ref. to benifits, i applied for attendance allowance, and a blue parking badge and got both, the attendance allowance to the lower level. my doctor told me that all applications were reffered back to the g. p. and he would know it was my application and pass it through, when he recieved it. so i feel it helps to speak to the g.p if you are thinking of making applications for either the attendance allowance or blue bade. m. edwards.

This is OT (off topic) from the benefits thread, but some posters were having trouble using the quotes.

This version of software for this forum (phpBB) uses the quotes a bit differently than some other versions. Other version create and open and closed quotes you you just paste the text between those two commands. The way I quote someone's post here is to 'highlight' the portion of text I want to quote (left-click and drag the mouse till it's highlighted), then 'right-click' on the highlighted text and click 'copy'. Now that text is on your clip board. Next I click 'reply' in the thread. Now... click 'quote' button above the text window and you should see the code for quote show up looking like this:

[code:1:8689c7488c][quote][/code:1:8689c7488c]

Now 'right-click' your mouse just to the right of the quote box, then click 'paste'. Your text you wanted to show as being quoted should show up there. NOW, click the 'quote' button again and this will close the quotes. Then you can go ahead and post what you wanted to say after the quotes.

Hope this helps. I've been a moderator of different forums over the years and it's not too hard once you get familiar with it.

[quote:ca0a9fc434]This is OT (off topic) from the benefits thread, but some posters were having trouble using the quotes.

[/quote:ca0a9fc434]

Rick - if this has worked, you're a wonderful teacher; if not, I'm useless :lol:!

Many thanks from me and I'm sure from Betty, too.

Rick

You're a wonderful teacher. I'm so excited.....think I should go and lie down in a darkened room now!!!

MrsO

Attendance Allowance.

http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Disabledpeople/DG_10018710

You can fill in the form on-line or download it.

Difficulty filling it in Citizens Advice Bureau, Age Concern or your Council Social Services and some GP practices also have people who help you fill it in.

OK, just remember, you paid in and although you never ever wanted to be in this position, you are and you need help.

I did and still do.

:ok: