Just been Discharged!
Posted , 7 users are following.
Hello everyone
I have just been discharged which did somewhat surprise me as I am still taking steroids albeit only 2mgs.
Rheumatologist said that as my ESR is normal at 19 (normal range is 1-20) and my CRP normal at 7 (normal 0-10), I could now manage the rest on my own.
Still have some pain in my upper arms so he told me I could either increase back up slightly or ride it out and stay on 2 for another 2 months which will make 4-5 months in all on that dose since starting the reduction from 3. He seemed keen that I should try the latter.
My previous 2 ESR readings have been 8 and 11, so there is an increase and I guess I will have to just wait and see....and hope!. I mentioned my weakened arm muscles which he confirmed was a side effect of the steroids and advised me to take up Pilates.
Just thought you'd all like to hear that there does appear to be some light at the end of the tunnel.
My excitement at possibly coming off steroids soon has unfortunately been tempered by hearing that my kidney function has further decreased, but I guess that's for another forum!
Best wishes to you all and wrap up really warm against this freezing wind.
MrsO
0 likes, 26 replies
Lizzie_Ellen
Posted
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
Mrs_G
Posted
MrsO-UK_Surrey
Posted
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
MrsO-UK_Surrey
Posted
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
mrs_k
Posted
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.
Lizzie_Ellen
Posted
[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
mrs_k
Posted
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
MrsO-UK_Surrey
Posted
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
Lizzie_Ellen
Posted
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.
Lizzie_Ellen
Posted
Lizzie Ellen
MrsO-UK_Surrey
Posted
MrsO