PMR and DLA Benefit

Chisnal 1944

Attendance Allowance is a tax-free benefit for people aged 65 or over who have an illness or disability and need help with personal care.

Google 'attendance allowance - UK'

DLA can be problematic - did you try for the above.

mrs K

Hi Mrs K.

Thanks so much for taking the time to reply. I am a 54 old lady so maybe I dont qualify for Attendance Allowance.

Its just so frustrating that no one seems to realise how painful this illness really is, even my partner seems to think I am moaning alot, maybe because every now and then we get relief from the pain by bumping up the steroids, people dont understand why one day I am all smiles and the next down in the dumps. What with the weight gain and tiredness, its driving me mad. Oh well I have had my moan lol. Good job we are a tough lot :lol:

Just thought I would say I know how you are feeling !! People dont realise that you have anything wrong with you !! The tiredness is strange not connected with having done lots of physical work but just washes over you complete exhaustion sometimes This is my second bout of polymyalgia and I remember the first time around I was so tired in the supermarket I thought if I dont go home I will lie down on the floor here and now and go to sleep !! I was 54 when I had it first time and had been very active so it does come hard I had 2yrs on steroids then 3 years free of it and back for the last 5mths I am at present trying to get down from 7.5 without success I feel fine on that but when I tried to go to alternate 7.5 and 5 it doesent work so more blood tests in a week and a bit more stabilisation I think Ive checked back to last time and it was 7 months before I was on 5mg so Im only 5 months down the line so Im trying to cheer myself up with that !! I am glad I have found this forum this time as it does help knowing that others feel the same

Thanks for that Mrs G. That must be gutting when you are eventually free from it only for it to return. Your first thoughts must be that you have to go through the whole pain barrier thing again. I got down to 7.5mg but was in alot of pain throughout my body. I thought I would play crafty and see if the pain would burn its self out. After a month I decided I'd had enough so went back up to 20mg (doctors orders) and suppose to reduce 2.5 every so often. Think I will have to go back to docs this week, for some reason I have been taking 20mg now for 5 days and the pain isn't getting any easier. Do you have many blood tests? I was diagnosed a year ago and had a blood test when diagnosed and only 1 since around 6 months ago.

Chisnal-1944 and Mrs G

Google pmr-gca and then click on the Tayside website.

Read it and then email any of the addresses shewn there for more information.

for some reason this site won't let me log in and I cannot give you the email address unless I am logged in.

mrs K

Chisnal I was very concerned at your lack of blood tests !! My Doctor gives me monthly blood tests at present and I think the longest gap I had was 3 monthly in my previous bout but that was when I was on a maintenance dose of 1 or 2 mg I also dont let pain take over I allow a maximum of a week with plenty of rest and if Im still feeling bad I up the dose slightly as I feel you go back to square one otherwise Feel better already today so hoping my blood tests will be good next week Good Luck !!

Mrs K & Mrs G thanks for that information, I have been on the webside and requested information be sent to me. I didn't know what GSA was but I have read something on that website that has now made me make an appointment to see my GP. I have been suffering headaches and my jaw feels like I have neuralgia which apparantly are symptoms of GSA

Do any of you have this condition as well as PMR? Mrs G, you say you up the dose of steriods when you need to, do you do this yourself or do you visit your GP everytime you need to adjust?

No though I am seeing her often monthly at first now 2 monthly she has said if the reduction doesent work go straight back up to the previous dose and get a blood test done after as she feels if you delay you could end up on a much higher dose again and start from scratch I think because this is my second bout of PMR she realises I understand it a bit I also keep records of my blood results and can compare them with last time Luckily I have an excellent Doctor !!

Chisnal

To answer your question, yes I have both PMR and GCA.

It's good that you have been put in touch with the PMR Fighters and have learned that headache and jaw pain are symptoms of GCA as these are certainly among the symptoms which I had (I also had nausea, vomiting, total loss of appetite and heavy weight loss, facial swelling (particularly around the eyes) and blurred vision before being diagnosed)). You will probably now have read that with GCA an early diagnosis is essential as there is a risk of losing one's eyesight and hence high Prednisolone dosage is normally then prescribed (40mgs).

As regards the blood tests: I was referred to a rheumatologist and he arranged blood tests every month whilst coming down from the higher doses. However, now 2 years later it can sometimes be 5 months before I see him as when you got below 5mgs he advised that I should stay on each reduced dose for a minimum of 3 months and that I should go up and down on the dose depending on the symptoms. I do find, however, that I'm floundering a bit, with more discomfort and confusion as to whether I should put up with some amount of pain or increase back up. I did finally increase yesterday but only by half a mg daily. However, had a blood test 'through the back door' so to speak a couple of weeks ago when undergoing dental surgery. Got the result today and although the ESR is normal, the CRP is 19 (it was normal at 4 in December) so may have to increase still further but would really find it more reassuring if the rheumatologist would arrange more regular appointments - however their time and finance seems to be a problem!

Interestingly, I have just read what Mrs G says about increasing back up rather than ignoring it as otherwise it may be necessary to go back even higher!

It's good that you have now arranged an appointment with your GP, if only to put your mind at rest regarding your head and jaw pain and the possibility of GCA. However, I do hope that it will be good news for you.

MrsO

Chisnal

I meant to ask: When you tried putting up with increased pain for a month and then were advised by the GP to increase back up from 7.5 to 20mgs, do you know what your ESR and CRP readings were at that time?

MrsO

Mrs G

No I don't know what my ESR and CRP, I have only had the two blood tests and to be perfectly honest, I am not sure what they both mean or what is a normal Level?? Infact I don't even know what the results were of the two tests I had. Think its time I asked a few questions!

I know raised ESR is the most common blood test used to diagnose PMR but the first time I had PMR it was my CRP which was always the highest Find out what the levels should be and what yours are and keep records when you change steroid doesage and if you get some pain write that down also I managed to find some old diaries from when I first had it in 2002 so it has been useful to compare I was rather fed up when I had to put my doseage up again at the weekend but when I looked back at last time it took me longer to get down to that level so I felt a bit better !! Good luck and read as much as you can

Hello again Chisnal

CRP stands for Creatine Reactive Protein; ESR stands for Erithrocyte Sedimentation Rate (the reading is measured by the rate at which the sediments fall to the bottom of the test tube). I had normal readings last December which were CRP 4 and ESR 7. This week my CRP is still raised to 19 but my ESR is still in the normal range at 8. I will probably have to increase the dose further.

Hope this helps - I always feel I want to know my results so that I can know where I'm going, and hopefully if you ask some questions at your next appointment that will make you feel a little more confident and in control. Good luck.

Mrs G - that's good news that you appear to be coming down faster on your recurrence of PMR - such news helps to keep your pecker up, as they say.

MrsO

Mrs G and Mrs O

Thanks again for the advice, it really is appresciated. I have an appointment this evening so I will let you know how I go on. The jaw pain, is it in the actual lower jaw bone normaly? Mine is where the two jaw bones meet sort of near the back wisdom teeth at the top.

Chisnal

Yes I would say the pain was where the two jaw bones meet - in other words it was uncomfortable when chewing on something like meat.

Good luck this evening.

MrsO