please can anyone answer my question below

this is my 3rd week of Prednisolene 2wks on 20 mgs this wks on 15mgs.feeling ok on lower dose but not as good as the higher dose is that normal?also experiencing crawling sensation on my body especially the legs is that normal?and if any in the work force with PMR how do you all cpoe with it?

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Hi akumal

I think that the drop from 20 to 15mg was too big a drop. I could not even manage a 2.5mg drop and had to do it by 1mg every 2 weeks. It was OK like that, but I still had side effects for a few days after each drop. I have not experienced the skin thing myself, but I have heard that this can happen sometimes. If it really worries you then talk to your GP.

As for work, my specialist advised me to give it up as it was too physical. I said that I would try computer work instead and he said that would be OK.

10 months ago I was on 30mg prednisolone and now I am down to 7mg, but it is still a struggle. If I had been doing a lot of physical work, I know for sure that I would not have improved.

Hope this is some help to you.

Pats

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Hey thanks for your reply.having PMR an holding down a job is a different ball game.at the age of 54 an I am out of work because of sabbatical leave,( this illness came up during my leave)an not having a husband , an the need to provide for myself makes this situation hard to grasp, at the moment I am now looking for a job.my only line of job that I know is in the care sector.so yes scarey.not cried before all this as I thought I was brave enough to handle it .the bars have now been raised,the thought of having to deal with this illness an not being able to work or provide for yourself is way to much.so yes first time I am here replying to you an I am crying.ok will keep in touch. Thanks

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akumal,

Because you have been diagnosed with PMR, could you not get a letter from you GP saying that you can no longer do the physical work that you used to. Would it not be possible to get some re-training to do a sit down job. Computer work for instance.

I really do understand why you are so upset. Believe me, you're not on your own. The State seems to be offering very little help for those who are sick.

Pats

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Your suggestion has been noted,will see how thing progress, an how my body cope with the dosage I'm on ,I hoping that I am one of those low percentage people who sails through this with not too much problem .one can only wish an hope.an that's what I am doing now ,early days.

[Dibs]

Hi Akumal I too had the crawling sensation and my GP did a test for anaemia and I'm now on frolic acid and it helps.

I to work and have no home support network and it's hard even if it's just for the fact of someone to talk to when you're feeling poorly or even make a cup of tea because you can't get out of the chair or bed.

This is a great community on here as even if you can't sleep through the middle of the night you can put your questions here and you will get an answer, there is knowledge of this illness as this is what we all have in common.

Hope this helps

[iowexile]

hi i was signed off work for two months i had to go back because there was no help and i was only on basic sick pay and that was not even enough to cover my rent i have been back at work for 3 wks im only doing 3 days at first it wasent too bad but now im lowering my pred i find it hard but i feel i have no choice but to work i cannot afford to be on the sick im hopeing to be back to full time by xmas even if it means putting up my pred again

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Hi iow,

Please go back to you GP and tell him the situation you find yourself in now. If you drop the pred and have a flare, you will be back in pain and weakness again. You will be unable to work. If you are stressed out because you cannot cope, your illness could get much worse. If your GP cannot deal with this fact , you need advice and guidence from a specialist.

If you cannot work because you are really weak, then can you not get extra help from the State?

My rheumatologist said he could not give me the amount of steroids that would enable me to do the physical work I was trained for. The dose would have damaged me. When I said I would train to do computer work he said that was OK.

I realise how hard it is to get help nowadays, but do try. You can't possibly extend your hours if you are not up to it. Don't drop the dose if you are having bad side effects.

Surely you can get rent allowance etc. The CAB are very skilled with advice on how to claim benefits. Tell them you need an urgent appointment.

Pats

[poppysmam]

Hello All,

what a state this country is in when those of us who need financial help cant get it, yet some who have never worked a day in their lives get everything for free (one next door to me is a prime example) i have decided i am going to fight and i have written a letter explaining how long i have worked, what my pain is like etc etc, i have made copies and im going to one to my GP and Rheumy, may not do any good but it made me feel better putting it all down in black and white. Rant Over !!!!!!!!!!!!!!

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Hi Poppy

How right you are to be angry. I have sent for the attendance allowance form twice now and both times have decided that I probably don't stand a chance of getting a penny. Oh how cleverly these forms are worded. The government dictates that if you can manage your own personal care, get up and go to the loo at night and cut up a piece of meat, then you don't need help.

Yesterday, I walked to the supermarket, spent about half an hour choosing a few things and then carried a small amount of shopping home. That all took me about an hour. Today many of my joints hurt like hell! I'll have to take it real easy or I'll be no good for anything at the weekend.

Any heavy work has to be done by my partner because if I overdo it, I'm virtually bed-ridden.

Pats

[poppysmam]

Hi Pats,

I know exactly how you feel, with carpell tunnell back in my wrists and hands it took me an hour to change the bed yesterday, and one corner of fitted sheet is still is not on properly i just havnt got the strenght to tighten it, never mind i suppose worse things happen at sea.