Benefits anyone?

BettyE

No not odd, just very odd.

Whilst I cannot do as much physically as before, (well I was getting older anyway), what I can do is finish crosswords, I can sleep for UK and would win a gold medal, have longer finger nails, but wish toenails would not grow as quickly.

And BettyE like you sometimes my speed of re-action astonishes me.

But best of all, I have learned to say 'No'.

Downside, I now shout at the tele - but that could be because I am a grumpy old woman whose cup is still half full.

Hello BettyE and Mrs K,

Well, don't I just wish!!!!

In the last year or so I seem to be constantly burning myself or cutting lumps out of my hands in the kitchen! And because my skin's that much thinner it all seems to take for ever to heal up.......

Neither do I sleep very well.

On the plus side, hair is really thick, on my head I mean - I seem to have lost the peach fuzz now I'm down to 7.5 pred. And, yes, nails grow like mad.

The other plus is hard to explain. I'm just determined to be as healthy as possible to make up for the PMR so I watch diet, exercise etc really carefully to try and make the best of life. Don't get me wrong, I'm not always so upbeat about that, especially when one has one of those set backs and up goes the pred. That's the time when diet flies out the window and Danish pastries are my real downfall. It's not chocolate or booze.

But for folk who are just starting on this road I'm nothing like as emotional and moody as I was when I first started steroids 2 year ago. I don't think the family knew what had hit them.

Keep safe all of you, Pam

Hi all,

yes, one wonderful benefit for me. No more migraines since taking pred for 7weeks. Was averaging one a week before that------great-----long may it continue!!

Molly.

Molly - how long had you been having migraines?

EileenH

Hi Eileen,

I'd been having regular migraines, roughly 1 per week for 34yrs,I can remember it well because they started when my daughter was a baby. I thought the headaches were due to lack of sleep ( she was a poor sleeper) and I never could function well when deprived of sleep, but they were diagnosed as migraine headaches, and I've had them ever since until starting on steroids. Bye the way what's your opinion on Alendronic acid bone protector? Been to my doc this morning and was prescribed them. On arriving home I had a quick look on the internet about it and some of the side effects seem horrendous especially osteonecrosis. I've since rung him back and said I don't want to take them!! I am taking Calcium and vitamin D. I don't know if I've done the right thing, but I shall have a think about it and possibly change my mind when I see him in a few weeks time. The rheumatologist said with the amount of milk, yoghurts etc I have, I shouldn't need a bone protector, so there you go. Would value your opinion.Cheers,

Molly.

Molly

The others will be along as well.

But here goes before agreeing to take 'bone protection' ask GP for a referral for a Dexa Scan. This takes about 20 minutes at a hospital and costs the NHS about £16. If your bone density is good - you do not need the bone protection.

Secondly, did your GP do a Vit D test and if so what was the result, if not, ask him to do one specifically. Vit D deficiency causes aches and pains and can add to the problem (see the Vit D thread on this site)

My Dexa scan was 97% and I have one every year, been on high dosage (started at 60mg and three and a half years later now on 3mg). Had two more Dexa scans at yearly intervals - bones still 97%.

As long as you eat proper Dairy products and that includes semi skimmed if you don't like the full), proper cheese (not the plastic sort) and butter, yes real butter (not the spreadable sort) the kind you have to keep out of the fridge in a butter dish before you can spread it.

Yoghurt and Mrs O and the others will tell you what sort, Manuka honey. Tumeric in everything you can put it in.

Have a look at the website [color=orange:0581bb5ee3]www.pmr.gca.northeast.org.uk[/color:0581bb5ee3] - there are tips from Nutrionists to help you along.

Keep visiting and join, then you need not post as Guest - post as Molly.

Loads of snow up here gals.

oops

in the website address I typed an'o' instead of a 'p' [color=orange:ac964c0c44] **[/color:ac964c0c44]

That's because I am watching the blizzard from the window and the gritter once again - our gritters deserve a medal, not the threat of job cuts next year.

[color=orange:ac964c0c44]** I have amended this for you,

EMIS Moderator (1) [/color:ac964c0c44]

Hallo Molly and All

No migraines after all that time must almost make you glad you,ve got PMR ( no, not really )

Re allendronic acid I started on it but woke one morning after 6 doses ( 1 a week ) to numb lips and wheezing. Never had a cough in my life, nor asthma. Massive all over rash reaction to either the AA or penicillin given in case it was a chest infection. After that notes were marked \"no AA and no pen.\"

Dexa scans are routinely refused by our PCT but I haven't worried too much as I eat as Mrs.K. recommends because that's what I like and got up after two falls in recent years with no broken bones.

Interesting, isn't it, that your rheumatologist reckons your diet is good enough for you not to need AA but your GP dishes them out anyway. More benefit to the drug companies than to some patients one has to think.

Long may the pain free head last even after PMR departs. Best wishes BettyE

Hi Mrsk, Haven't asked about my Vitamin D levels yet but I will do. Such a lot to think about with this blooming illness isn't there? expect I'll get into the swing of it all. When I rang my doctor back he did mention about having a Dexa scan, I'd never heard of it! So if I have that done and then decide what to do about bone protection, maybe that's the way to go. I'm grateful to all of you for your replies.

Many thanks,

Molly.

Don't know why I'm suddenly being posted as a guest. Been posting under Mollycoo for weeks now--ah well another of life's little mysteries.

Cheers,

Mollycoo.

Been snowing non-stop all day, a good foot has fallen.

Molly - how strange about the migraines, but I imagine it may have something to do with the fact that it is thought that some migraines are caused by spasms in the arteries leading to reduced blood supply to bits of the brain and maybe the steroids are calming the spasms down. I used to have migraines too but hadn't had a decent one (if you see what I mean :roll: ) for some years anyway.

Alendronic acid: I don't take it. I was given it quite early on and took about 3 months worth. I hated taking it but had been given the \"prevention rather than cure\" line. After starting on the massive library research action I've indulged in since I was diagnosed and after finding this forum I decided I was less than enthusiastic about it and the next time I was at the GP to get umpteen months worth supply I discussed it with the doctor I saw that day - a different one. He agreed - especially in view of the more negative findings that were beginning to be found. Apart from the fact that there is no real evidence that it does prevent fractures - it increases bone density but with a different type of bone which some researchers think is not as stable as normal bone, this is under dispute however - the market was created for the stuff by the company that developed it originally. They went beyond use for patients with osteoporosis and fractures and did bone scans on a massive non-ailing population and showed that many people had a slightly lowered bone density and persuaded them that this (called osteopenia) was something that needed to be treated, even when it was not a problem. I object strongly to being manipulated in this way by big pharma!

Alendronic acid is associated with a considerable increase in the risk for oesophageal cancer and is a problem to take for many patients as it causes gastric irritation and reflux (it's probably this that predisposes to the cancer). The company convinced doctors that it could be taken with impunity for years so should be given to anyone post-menopausally to prevent bone-density loss. In the meantime the recommendationsa re that it should not be given for more than 5 years. As MrsK has said, you may not need it. So a baseline dexa scan should be done at an early stage of taking steroids and a follow-up one will be done after 2 years. If your first one shows a good bone density you may never develop a problem. The risk is at high doses - the dose for PMR is never high (40 to 60 mg a day) and most of the time is approaching what is described as low (less than 10mg/day).

I had my first one after I had been taking steriods for about 2 1/2 to 3 months and most was slap bang average. I have one vertebra that is osteopeneic (a bit low). I'd had it suggested to me I should look for a repeat scan after 12-15 months and have asked for that in the UK but it has been turned down even though I was on steroids and NOT taking alendronic acid. The second time the rheumatologist said that the majority of bone density loss occurs in the first 3 months and there was no point redoing the scan until 2 years after.

There are a lot of other factors involved - primarily dietary in combination with exercise. As long as you have a good calcium and vit D intake - you should have calcichew or adcal supplements - and do some bodyweight-bearing exercise (walking)the calcium should still be taken up. Never use skimmed milk products - calcium and vitamin D can only be properly absorbed from the gut if there is some fat around. Yes, it's true there is more calcium in skimmed milk - but it WON'T BE ABSORBED so it won't do you any good! Semi-skimmed is still only 1.5%, hardly a high fat content. But this whole low fat thing is a fallacy anyway - it isn't fat per se in your diet that makes you fat, it's fat in combination with refined carbohydrate (white flour and sugar of any form) that makes you fat when you eat too much of it. Buns, donuts, cakes and biscu

Hi Eileen,

many thanks for all the info. I shall read and inwardly digest---ha ha. I do value all the help and advice given on here.

Thanks,

Molly

Good Afternoon

Not a PMR........... but a CGA but no one posts on the CGA thread.

Gosh we do seem to be a group of \" I will decide myself after reading all the info......\" which in itself is good. I fall into the same category re all the drugs my GP says I should take. (They do say Nurses are the worst of patients, we ask lots of questions and take precise notes, although I think that as time goes by for those who have a long standing problem it seems one must become one's own health Ambassador .......)

I take my Steroids and my Omeprazole in the morning, but if I did not have a good excuse for my very patient GP I would be taking AA, Anti hypertensives etc. (I did treat myself to a very costly Digital Sphygmo to keep an eye on my B/P, and get reasonable readings.)

Saw my Dr this morning.......My ESR is now within Normal limits but my CRP is elevated along with my White cell count.....so now on to the next phase of this long journey. I must see a Hematologist to decipher why my White cell count is elevated.

In the meantime I have just cleared the pathway of my little house with a Snow shovel I bought last year. I did mention to my Sister that it would be a good idea to buy one.......Oh no said she we don't need then in this country. She phoned a little while ago to say would I buy one for her cos she had cleared the snow with a Coal Shovel and her back was aching like H*ll .

I do feel we must be prepared for Anything at Any time...that's why I always buy 2 or three of basic items so I am never stuck without. It's that siege mentality that I have not lost from many years in Snowy climes.

Hope you all had a good / reasonable day.

Hi both of you!

I got looked at very strangely a few months ago when I had a very mildly elevated cholesterol - mainly the HDL - and stated quite firmly that my GP needn't even THINK about statins. She was quite obviously about to say just that judging by the expression on her face. I think that for anyone who does not have the genetic form of hypercholesterolaemia they are an invention of the devil (aka some big pharma!). There is a fundamental misunderstanding of basic science out there - and especially physiology. Where did the skilled physicians go who thought about the clinical picture and not just the lab values!!! :roll:

Enjoy your snow people - I know the feeling Milly! I told both daughters to sort out their winter tyres in October before it was needed. One did and is driving around quite happily. The other - who really needs them as she now lives on the top of a hill on the east coast of Scotland - waited until the day before it snowed! I despair! We've had at least a foot today, possibly more overnight, then a minor break and more on Friday. Then temps of -17C to come! But all is normal here, buses and trains running, people riding bikes...

EileenH

Hi Eileen & all,

Clearly you are better prepared for the weather than we are in Ireland...our buses are totally disrupted...son could not get to college today, daughters school was closed and to top it all Hubby could not get to his office , so I was stuck with all of them at home for the day :roll:

Isn't it strange how your own family can disrupt your own little routine SOOOOO much :wink:

To Molly...I have taken alendronic acid for the last 3 years as I have osteoporosis in my spine and osteopenia in my hips. My Dexa scan has improved a little since I started it but of all my meds it is the one I really hate as It has to be taken half an hour before any food or other meds, have to stay up after it and have to take with loads of water, so always need the loo the whole morning after it :oops: That said, it seems to be doing what it is supposed to it so should not complain.

Best wishes, Pauline