STEROIDS - ANOTHER ARTICLE BY DOROTHY BYRNE

Granny Moss: Walked in that area and saw the vineyards and drink Montepulciano whenever I find it because it is nectar on the tongue!

Am having bloods done later this coming week and still awaiting rheumy to contact me after doc contacted him nearly two weeks ago! I give up....... obviously not top of his list of priorities!

My appt for Dexa scan and appt with rheumy came through weeks ago for end of March so can only presume he won't now see me regardless until then..... have another appt with doc 28th so she might have heard from him in the meantime.....

Although not in the pain I was in, having this continual discomfort and difficulty is a pain in the proverbial but not life threatening........

Granny Moss

Just a quickie, as I know you have not been posting on this site as long as some of us. So I will repeat myself.

Take yourself and all your pills to the chemist and ask to see the pharmacist.

Ask him/her to check that they are are all compatible with each other.

Pharmacists know much more about drugs than GPs.

Everytime I am given a new prescription for something different, my pharmacists automatically checks now - he has a list - when I collect he says they are OK. If they are not - he rings my GP and gets them altered.

If I want an over the counter, I ask. Every Pharmacist will do this for

you. Just ask.

Night Night had a busy day in the garden as the sun shone and my blessed gardener came down for 3 hours. Absolute bliss.

Hi

Mrs O - by weight bearing exercise I mean the aerobics - its good for the osteoporosis risk whereas swimming isnt, if you see what I mean?

I would be interested to know your weekend diet despite the lack of red wine - maybe I could do it during the week, when wine isnt such an issue??!!

I will try to reduce the carbs too.

Does Pred actually change your metabolism?? I was always a \"slow loser\" on a diet even before the lovely pred..

Beev

Hello Beev

Yes it does change the way your body metabolises food especially carbs When I started on steroids again after over 3 year gap and spot on the weight I wanted to be and very fit for a 60 year old !! I read quite a lot about it but unfortunately reading about it hasnt helped me !!

I was also a slow loser , slow but steady not the type of person who lost 3 lbs one week and put on 5 the next !! I have also thought about the people on here who have lost lots of weight and perhaps if they had a fast metabolism before it works in a different way with them ??

My weight did go up a lot a the beginning of last year when I had a real blip and my day was to say the least not very active It is annoying not to be able to control the weight when you are doing everything you can but its worse not to have the steroids I am going to make more effort with salt I dont use that much most of the time at home ( always use lo salt ) but when I am out if its on the table I do It will be pepper from now on

Fifties girl I dont want to encourage you !!!!!! but Lidl usually have Motepulciano We get Bardolino from there as we love Lake Garda as my husbands sister lives near there They normally do a very good german red ( very smooth ) but havent seen it lately Need a glass or 2 with your lunch today as its so miserable!!

Hope everyone has a good day Bit stiff again today ( after my straw moving exploits !!) but it wore off yesterday

Best wishes

Mrs G

Hi Mrs G amd Mrs O

What about \"Lo-Salt\"? Supposed to be low in sodium and high in potassium. Do you use that - I use it all the time but not sure of its benefuts.

Beev

Hi Beev

I don't think it's really known exactly how Prednisolone works in the body - many of us are witness to it affecting our hormones (facial hair) and our body fat (hump on the back of the neck and tummy). It does cause salt retention (hence extra fluid retention leading to weight gain) and lowers potassium levels, so the general advice is to avoid salt and substitute with herbs. As far as potassium is concerned, we can get that from our foods - bananas are just one source. I haven't used any salt at all since being advised by a dietician to avoid it whilst I was pregnant, thereby avoiding any adverse affects by too much weight gain on my sole kidney. I remember the first boiled egg without salt - completely tasteless; however, after pregnancy I could only taste the salt and not the egg, hence I'm able to enjoy everything without salt but I do add herbs.

As far as carbs are concerned the best option is to try to have more wholefoods such as wholemeal bread, wholemeal pasta and rice and sweet potatoes.

Like you, I seem to have a slower metabolism and when I had to take beta blockers for a few years the resultant weight gain was impossible to shift.

Unfortunately my spinal problem prevents me from doing the aerobic form of weight bearing exercise like you but I'm hoping I'm getting a similar effect from my daily walking. When I get back to my Nordic walking that will be even better - the free course I went on was run through Age UK who advised that Nordic walking was a more beneficial workout for the heart and the lungs than either swimming or cycling! So our Mr G must be getting fitter by the minute and I hope to join her soon!!

I've gone on a bit here, Beev, so I'll send you the weekend diet by PM rather than risk boring everyone else any longer! :lol: I've actually still managed to keep to the 2lb loss since last weekend but, having said that, I've been very virtuous through the week, too! :roll:

MrsO

Oh Mrs G - I'm so sorry I've changed your gender, purely a typing error! :sorry: :lol:

MrsK. Thank you for information/advice on medications. Will take \"ditto\" to Boots the chemist for advice. I do not trust my local chemist on this, because they change chemist at least once a week.... :? :roll: I still feel dizzy on and off, but amazing the situations we have to accustome ourselves on having this PMR as a constant :evil: Hope and wish everyone not to have too much pain today. Another :evil: very grey day....Looking forward to a wonderful summer, even if it only lasts a few days ! :P Can wait to put on my polka dot bikini... :wink:lie on my well padded garden lounger... and hire a beech boy to serve me some :bubbly: :choc: :rose: After all I cannot take it with me..... :ta: Granny Moss :wink: After all, there is no answer to that ! xxx

Hello Mrs O

Thats fine Mr G is a lot fitter than me !! but no time for Nordic walking as still working

Yes Beev it is Lo Salt I use I love pepper so that helps too I expect you drink lots of water anyway if you exercise a lot which we need to do I did have low sodium levels at some of my early blood tests after steroids and my Dr was going to refer me if it continued but it has stabalised It doesent help by taking more salt ( too obvious !!) but more to do with how your kidneys are working Probably something to do with those dratted Adrenal glands not working properly after you have been on steroids a while !!

Glad you are remaining cheerful Granny Moss !!

What a rotten old day Hope it improves tomorrow

Mrs G

HI all - not really back yet as daughter No1 plus son are still here until tomorrow! Haven't been able to get near my computer all week for other people wanting it! Grrr!

However - just a note on the salt point: if anyone wants to reduce the salt they use you just have to put up with feeling the loss of it for about 6 weeks. That is the amount of time it takes for your taste buds on your tongue to be replaced! After that you won't notice the lack of salt because the new taste buds never learned to like it but you will struggle when eating out as the amount of salt put in food in restaurants is horrendous! It's exactly the same with cutting sugar out of drinks - after 6 weeks the craving for the sweetness will have disappeared. So it's no problem if you can stick it out.

MrsO (?) was quite right about the prednisolone/prednisone thing: prednisone is what is called a precursor and is processed by the liver to make prednisolone which is the active form. I think you need a slightly higher dose to get the same effect.

Beds - you need a bed that \"conforms\" to the shape of your body to support the spine properly along the entire length - not the bone hard things that were recommended for years. The best beds I have had are actually from IKEA and the cheap end foam mattresses! For years our bed bases have been wooden slats (ordinary pieces of wood) with a less than 6in foam mattress - the sprung beech slats are meant to be better but I am not overly impressed personally! At IKEA they don't have a fit at you lying on the bed in the showroom for half an hour (or more) to see what it really feels like - only trouble is the mattresses are their own size and need an IKEA bed to go with them! No other country seems to have the same size so they must be Scandinavian sizes! They are nice and long though so your feet don't hang over the end :lol: One of the bigger problems for backs is uneven weights of partner which makes the bed tip down to the heavier partner on a double mattress. We have a 1.6m double bed with 2 x 80cm mattresses - much cheaper than the fancy mattress with two different sides. We also have two single quilts - no pinching the partner's and you can have different tog weights if one of you freezes and the other doesn't!

50sgirl - wind is a very chilling experience when you have PMR! Norfolk is like the rest of the east coast - windy and cold! I won't go into details here but I am coming to the conclusion that the cause of the pain/problems is the way the blood vessels shut down and reduce the blood supply to various bits of the body. In wind/cold they constrict (why you get cold hands and feet and if you then try to exercise your muscles hurt because they are not getting enough oxygen (claudication) until you rest and they recover. The only time doctors/rheumys mention this is the jaw being affected in temporal arteritis but it MUST be going on in other parts of the body in many people. The pain in the hip joints is bursitis and takes quite some time to improve and will always resurface if you try to walk too far. You can improve the amount you can exercise before the claudication pain sets in - in some cases by up to 150%. To do it you need to work out an exercise programme where you work out how far you can walk before the pain starts, then increase that distance gradually, walking \"through\" the pain, i.e. don't stop immediately. In time you will be able to walk further and further but it has to be done consistently, on a daily basis, not go out and suddenly do loads when you aren't used to it.

Heavens - this must be an enormous post again! Back soon!

EileenH

Hello EileenH ! Back at last ! Missed you ! :artist: Granny Moss.

Nice to see you back Eileen

I havent given up salt completely but try to always use the pepper pot instead I hope thats not bad for you too !!!!!

I have made a lot more effort to keep warm when I am out and about this winter and seem to have lived in thick tights under trousers and have gloves in every coat pocket

We have certainly missed all your \" technical \" knowledge this week as ther have been so many different topics coming up

Best wishes

Mrs G

Thanks for the compliments :oops: :lol: Now I need a holiday to recover from my family's holiday! No - seriously - it has been OK!

I stopped using salt when I got a microwave about 30 years ago. I use it to do some veg (ideal as the husband doesn't do any veggies except frozen peas :roll: :wink: ) and you were not supposed to salt veg until after cooking and I always forgot! I use almost no salt - just for the porridge in the morning :lol: Now I use a non-stick pan and olive oil and \"grill\" my veggies. Much nicer!

EileenH

Hi Eileen....welcome back and we have something in common....I put salt on my porridge aswell :lol: ...it's about the only thing I do put it on :!: , and everyone else always reacts with total horror as they think it is a very bizarre combination :roll: :wink: especially as it never even occurs to me to put a salt cellar on the table :lol:

I stopped putting salt on my food years ago and now frequently find myself having to send back food in restaurants that has been over-salted for my taste...i always ask for any sauces to be \"on the side\" and avoid pre-prepared meals as most of them are full of salt. I cannot eat things like crisps and other snack foods as the salt content makes me feel ill :oops:

As some-one else pointed out on this site, it is amazing how quickly your taste buds adapt, and I now find that I taste the individual flavours of vegetables etc far better than when I added salt to my cooking.Likewise, when I started on the steroids, I lost my taste for very sweet things, and now find chocolate or other very sweet foods have little appeal....probably part of the reason that I have not put on weight on steroids !!!

I often oven roast veggies with a drizzle of olive oil and a good grinding of black pepper and the family don't even seem to notice the lack of salt ....so hopefully I am doing them all some good aswell :wink: .

My dear departed in-laws were a couple who tipped the contents of the salt cellar over their food before they even tasted it, and for a long time my hubby was the same....but I have slowly but surely re-trained him....I threatened to totally over-salt his dinner before serving it if he did not TASTE first...season ONLY if required !!!

Happy cooking and eating to all :wink:

love, pauline.

hello Pauline

Yes I have a friend who tips the salt cellar upside down then insists she hasnt enough salt !! Another friend always gathers up all the sugar from coffee for 4 and hopefully has just enough !!!! Ugh !

Mrs G