Just been Discharged!

Hi Mrs O,

Sounds as though you've had a good day in most respects. Of course we want to hear about your kidneys :magic: With regard to your cholesterol. Its quite a big issue in my family, mine has been as high as 9 so I've been on statins for several years. I came off of them when PMR was first being investigated incase they were part of the problem but I went from 4.5 to 8.5 in a couple of weeks so my Rheumatology Consultant said I really needed to go back on them, the lesser of the two evils I think. Since going back on them I'm back down to 6 and hoping for a further reduction with my next blood tests in a couple of weeks. My cholesterol simply doesn't respond to any sort of dieting or special foods but my GP has said in the past that Benecol and the like did seem to work for a lot of people and she would recommend them to a lot of her patients who were border line high. Most supermarkets do their own brand now and are considerably cheaper. You may want to discuss this when you see your GP. Exercise is a real problem at the moment (for me anyway) as I tried to go back to the gym but only the brain was willing to play!!! Anyway, really pleased to here about the kidney function and the glucose test. I'm also thrilled that after all this time I've just found another whole load of emoticons (wondered where you got your :bunny: from) so may celebrate this discovery with a glass of :bubbly: and a bar of :choc: !!!!

Regards

Lizzie Ellen

Very pleased to hear your good news Mrs O about your kidney function but sorry to hear about your cholesetral That will be your next research subject !! If its not one thing its the other Whe my husband was told he had high cholesteral ( family problem) he was told watch diet ( very healthy eater weight fine ) so nothing to do there so the other thing was hard exercise or Statins He was all for getting rowing machine until I pointed out this would be FOREVER not a few weeks to sort it out !! He then decided on Statins and luckily no side effects ( we can only cope with one poorly person ) I have felt a bit more lively the last couple of days so hope I shall be able to start my 12.5 next week Best wishes to you Mrs G

Hi Lizzie Ellen and welcome back from your holiday where I hope it was warmer and you were able to benefit. I think I'll join you with that glass of bubbly and the bar of chocolate - oh, you're so naughty putting the thought of chocolate in my mind....I do so love it and don't know how I manage to restrict myself to my 3 squares a day of my favourite Green & Black's!

Yes, the nurse at my Practice recommended Benecol and Flora Proactive saying that it has been proven to reduce cholesterol by 14%. I did buy some Benecol but I'm not too happy about putting any artificial ingredients in my body, and it contains artificial sweetener (I'd prefer to have a tiny bit of real sugar), glucose syrup and fructose, and I really feel that with diabetes being a risk factor from steroids it is safer to do without those extras. I already have a very sensible diet with loads of fruit and veg, a small amount of chicken and very lean meat and lots of oily fish so I don't think the GP's diet sheet will help much. What I am interested in is what sort of exercise he may recommend - I know that some GPs are referring patients for reduced price gym sessions these days.

As you have a familial cholesterol problem and you are fine on the statins then obviously you do need something to keep that quite high reading in check. The pharmacist was telling me the other day that there is a new non-statin available now for anyone who has problems with the statins.

At least you tried to go back to the gym, Lizzie, even if only to prove that the brain was able but not the body. As you get lower on the steroids, you may find it easier to try again but from my experience overdoing things has always induced more inflammation and I think it's very difficult with PMR to know where to draw the line as I feel it's too late once you're hurting, so do please be careful. I have found the daily walk, increasing the distance and the speed as my body allowed, to have been my most beneficial exercise plus, of course, my Tai Chi although I'm sure the latter is exercising my brain more than anything else!!! :?

Keep well.

MrsO

Oh thanks Mrs G, and I'm so pleased to hear how much better you're feeling. Isn't it amazing how low we can feel when we have relapses and how quickly we then pick ourselves up and get a boost when we can think about reducing again. Keep it up and good luck.

Can't write any more as my cat has jumped up on to the scanner and is nuzzling into my arm so I think she's won and I'll have to give in and give her a cuddle.

MrsO

Lizzie Ellen and others

Does your gym have power plates? My close friend with pmr swears by power plates and aqua-aerobics.

Just a thought.

Statins, it seems to be the Simvastatin that mainly causes muscle pain, check the side effects on the lables. People have switched.

[b:69630cf342]Hi Mrs O.[/b:69630cf342] Good info regarding the cholesterol reducing foods and drinks. As they're of no benefit to me I admit I've never studied the labels. Well done for remembering I'd been on holiday, wettest visit to Spain since 1984, so much for enjoying the benefit of the sun on my achy body 8) . However I got round to buying some new furniture and did get quite a lot of walking in, in between showers ! My worry is that I've felt totally exhausted and drained since I got back, I travel OK but the next few days are always bad. We're planning a tour of South Africa in October and worry that I'm going to be flat out with tiredness half the time - perhaps I'm just being a wimp. I'm dropping the steroids gradually (15mgs to 12.5mgs now on 11mgs, going to 10mgs on Monday) I wonder if that's what's making me feel so drained. The tour of South Africa is quite intensive and expensive and don't want to spoil it for my partner or waste a lot of money. Ho Hum. What to do I wonder :?

[b:69630cf342]And Hi Mrs K.[/b:69630cf342]

They won't let me do power plates at the gym because of my knee which is so past its 'sell by date' that I am treating it with kid gloves until I relent and get a new one, would like to get off the steroids before they operate. I can still do quite a lot of walking and hoping to get some swimming in (as soon as its warm enough for me to feel inclined to remove my clothes!!) With regards the statins, I started on Simvastatin as most of us do (its the cheapest I understand) but they didn't agree with me, I got the most dreadful cramps which stopped the moment I came off of them, so now take Lipitor (Atorvastatin) which seems to give me less trouble. I'm trying to be very positive but feel so darn tired I just want to curl up and sleep for a week :zzz:

Regards Lizzie Ellen

LizzieEllen

That is a fast drop, I, personnally think that you are not giving your body time to adjust between drops, withdrawal symptoms always occur when you have been on any long term medication. Most people on this site, find the slower the better, they either look at there ESR/CRP rate, see how they feel, take a drop and wait for about a week and see how they feel, if OK, then wait about a month and go for it again, if no better, back to where they were. Have a look at Ragnar's method, which a lot of people have tried and found it worked. But bear in mind that PMR has a mind of its own and we are all different.

Going in holiday, its the time zones you have to watch. Some people wear two watches, some adjust slowly over a few days. Some one will come along and explain it better than me, or visit www.pmr-gca-northeast.org.uk and read Ragnar and Alan's stories.

Good Luck

Hi Lizzie-Ellen - that's so frustrating to feel so exhausted after your holiday but then you obviously didn't escape the weather did you and I'm sure if we had a good dose of sun (Vit D) on our bodies we would all be feeling so much better. Wonder if anyone has tried a sun lamp? :cool:

I think even though you say you travel well, travelling is always quite stressful and more so on bodies such as ours where the adrenal glands are not working to their normal capacity to cope with stress.

From memory, I believe you are reducing your dose monthly at present which is usually the norm at the dose you are currently taking, but I think if I were you I would delay reducing to 10 on Monday if you are still feeling exhausted and low. It would be better to feel on top of things before reducing in order to be able to cope with any possible withdrawal symptoms in the first few days after the drop.

As for South Africa....wow! How wonderful and something to really look forward to. It is 7 months away and I seem to remember your GP was expecting you to have a text book recovery in 12 months (don't know how he knows that but I'm all for positive thinking!) but in that case you would be on a low dose by then and perhaps better able to cope. Perhaps it will be easier for you to decide when you have done another trip or two to Spain!

Hope you feel full of beans again soon!

MrsO

[b:450c479cc4]Hi Mrs K and Mrs O[/b:450c479cc4],

I have 4 to 6 weeks between each drop of Prednisolone so I'm guessing this is quite slow and I hear what you're saying about delaying tomorrow's drop if I'm not feeling too good. However, I woke up this morning and :wow: I feel much much better.

Let me start again! :? I was halfway through my post and 'pooooof' it disappeared, bit like my brain does sometimes! Anyway, as I was saying before I was so rudely interrupted, I feel so much better today so perhaps I will go for the 11mgs to 10mgs drop tomorrow. I decided to just give in to it yesterday, lay on the sofa, watch the rugby and read the paper - it seems to have worked. I'm seeing my Consultant in two weeks time so it'll be interesting to see what my bloods are up to. When I started the drop she said that 1 in 3 of her patients, who are able to start reducing fairly quickly after diagnosis, manage to get off of steroids altogether (I didn't ask about the other 2!). My GP friend says he has quite a lot of patients who never get below 5mgs. I'm hoping that by October I could be down to 5mgs, but I won't rush it. She did say that the drop would get smaller and smaller (my maths tells me this is due to percentages). We were planning on Peru but I quickly decided that the altitude combined with the time difference was simply not on so chose South Africa as they're almost on the same time as us. I've been saving for this trip for so long (big birthday coming up!) and I really don't want to wimp out, I think I'm just going to bite the bullet, pay the depost and finally make up my mind before I have to pay the balance. I've got the summer to work towards getting fitter and it seems we're all feeling a bit low during this long winter. Thanks to both of you for your advice, sometimes the obvious is staring you in the face, you just need someone else to bring it to your attention!!

Lizzie Ellen

Lizzie Ellen - so pleased you are feeling back to normal(!) today and therefore happily able to go for the 10mg drop tomorrow. Best wishes.

MrsO