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
Really pleased to hear your good news Hope you manage to get to nil before long !! Yes I am now worried about my upper arm strength as I was very strong Now weak and feeble !!So I shall have to work at it Best wishes Mrs G
Hi Mrs O,
What wonderful news that you have been discharged and I hope that you find the reduction from 2mg relatively easy.
It seems strange to me that my ESR is 5 and CPR 1.5 and yet I have only just come down from 20mg to 15mg and am certainly feeling the drop.
Having said that, I have yet to see a consultant so who knows where I will be next month.
I do hope you won't abandon us. Please! You are one of the main support systems on this site and we need you.
All the best with your final reductions.
Tilly
Mrs O
Discharged or not - don't go daft - take it easy - and keep it slowly slowly and YIPPEE !!!!!!!!!!!!!!!!!!!!
See you in London on 11th
Mrs G, Tills, Mrs K - thank you....you're all so LOVERLY! I think I'm probably a permanent fixture here Tills...you might all just have to let me know when you've had enough of me (hubbie reckons that's why the consultant discharged me!!!) Mrs K, I'm so looking forward to seeing you in London on the 11th and everyone else on here who can manage the journey.
Dear Mrs O, How encouraging for you ( and us), and I do hope all goes well with you. The rheumy must feel you are more expert than he by now! But please stay around on this site, you are such a help and encouragement to us all. Sorry about the kidney though and I do hope that gets sorted.
We've got snow again on the ground, don't know about Ashford. I'm sure we'll all start to feel better with warmer weather!
Great news again, Green granny
Mrs O so pleased to hear your news, and I hope its definitely onwards and upwards now for you now, I'm sure the thoughts of spring and summer coming soon must help too!
I used to think people who used this type of website had nothing better to do with their time, but since getting PMR (or fibromalgia :huh: - yet to be diagnosed!) think I would go possibly mad without it - but it does seem awful to think that we get comfort from reading about other people's suffering!! :hug:
Hopefully will meet you in London on 11th - that's if the rheumatologist decides it is PMR!
WELL DONE!
I am SO pleased that you will still be here to offer your sage advice.
Somebody said that there never seemed to be anyone who had recovered so I think we all need to remember this and come back every now and then to encourage the rest of us who are still struggling.
I wish I could make it to London in March to meet you all but, unfortumately, I have to work. I hope you all have a lovely time and I look forward to hearing all about it.
Tilly
Green Granny - thank you so much! Do hope that snow has cleared for you again........at least it's probably given you a chance to wear your new duvet coat!
Yvonne - love your little faces, and would you believe it's just dawned on me how you do them........have never noticed those 3 little words under the other Emoticons (old age beckoning methinks!!!). Lots of good wishes for a definitive diagnosis soon and a smooth recovery.
Tilly - so sorry you've got to work on the 11th, but maybe we can all get together at some future date especially if a group gets set up in this part of the land.
One little word of advice to everyone: try to keep those muscles strong during your PMR journey if you can (pain permitting!) as the steroids have weakened my arm muscles. My leg muscles are ok because of my daily walking but I neglected my arms, which is all too easy when they are hurting! I started this morning by doing arm lifts with a can of beans in each hand and arm press-ups. Have discovered that there is a class called Extend at the local Day Centre which is designed to strengthen the muscles so will give that a go next week.
Meanwhile, keep those muscles wrapped up everyone.
MrsO
Mrs O,
It would be lovely to have a south east get together some time and meet you all.
I bought myself a Power Plate which exercises all the muscles and doesn't hurt when I use it. Just Google Power Plate for all the information.
They are in most gyms and I would certainly try before you buy. John Lewis have them to try and that is where I bought mine. The good thing about them is that you can hop on for a couple of minutes at a time and it was brilliant when the snow was thick and I couldn't get out. Even just sitting on it seemed to help me at my worst.
I am told that the Power Plate was invented by the Rusians to prevent muscle loss in astronauts living in a space station.
Unfortunately they are expensive. There are cheaper copies available; I have no idea if they offer the same benefits but could be worth a look.
Tilly
Thank you Tilly for that advice re the power plates - you are the second person in the last couple of days to sing their praises.....the other lady has sent me info and pictures of the plates saying she has experienced relief from her restless leg syndrome, so they definitely sound worth a try and next time I am in Kingston I will try them out in John Lewis. I continue to be amazed at how useful our little forum is when people like you come in with such valuable information. Thank you again.
MrsO
Yes, JL Kingston was the place I tried and bought mine.
I have the MY3 as space and budget decided for me! LOL.
Good luck. I am sure you won't regret it if you do decide to buy.
Tilly
Dear Mrs O
So very pleased and encouraged to hear your news. From a completely selfish point of view it's great to know some good news about PMR, too.Hope your kidney problems soon follow the example your PMR has set.
Froggy gran
Hello Froggy Gran and I'm glad my news has given some encouragement - I know how much I would have liked to have read of some success stories when I was first diagnosed, as at that stage of confusion and bewilderment we so need to know there is light at the end of the tunnel. I only hope I can encourage you all further later this year by reaching the end of that tunnel. Thanks also for the good wishes re my kidney - there's not much I can do about that but I have been incredibly lucky to have survived healthily on one kidney since I was 13 years of age, so perhaps it's getting tired!
Very best wishes to you and do hope you are having a smooth run with your PMR.
MrsO
Glad to hear you have been discharged from hospital.
I might not post here very often, but I am here every day catching up with my PMR family! :lol:
Can't wait to see you all on the 11th!
Hello friends
Following a few blood tests yesterday I received a 'phone call from the GP Practice early this morning asking me to make an appointment to discuss my cholesterol. It is 6.2 and has ranged between 5.4 and 7.3 for the last 10 years so not driven up by the steroids. Will not take statins as they are known to possibly adversely affect the muscles and I think the steroids have done enough in that area! So apparently he's going to discuss diet and exercise with me.
Good news: Glucose test is 5.1 so normal and not fortunately affected by the steroids.
Extra Extra Good News: My kidney function has improved from 2 weeks ago and gone up from a reading of 44 to 53, still not normal but better up than down. I drank gallons of water through the night and on the way to hospital for the tests and it obviously worked! I'm such a happy bunny :bunny: and just had to bore you all with this news even though I know this is a PMR forum and not a kidney forum!!!
Lots of best wishes to you all.
MrsO
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