Sorry this may be really daft question for some but would someone with medical knowledge tell me if I am going crackers here!
Since the other day (about 2 weeks after changing to betamethasone tabs from pred) I woke up in agony with joint pains in ankles/knees!
Then later on that day ended up having to go upto our minor injuries to get left knee sorted as it gave way on me with what I been told was a bakers cyst!
Now a couple days strapped up and with walking stick to keep some weight off it apprently I am back to really PAINFULL joints now NOT just the left knee!
Wrists, knees, ankles and hips and elbows are ALL extremely sore and painfull beyond my comprehension!
Could the pred have been dampening down inflamation in my joints THAT much and that changing to the Betamethasone has revealed this pain!
Sorry I know it may seem daft BUT if it could be that then perhaps I need to see whether GP/cons can suggest WHY the pains are there after changing from pred!
Wheezer pred does reduce inflammation anywhere in body that is inflamed. The swap to Bec also because of its diffrent formulation your adrenal gland will be trying to catch up. Pred is used for alsorts of inflammatory conditions including arthritis, bowel conditions etc.
Hope your body catches up it may take a while though!
Thanks Louise.
I think I will have to speak to my gp at least or try see her this week.
As this is really to much.
My mums nagging me to put it upto the 80mg equivalent (my max home dose) to see if that helps but really dunna wanna have to stuff 24 tabs down my throat.
But I guess if its choice of feeling sickly with amount of tabs or pain then sickly would have to be it.
Gotta get through this some how till can get a call into gp!
Thanks folks!
stupid question maybe but why did you change?
Bex
Not stupid question at all Bex!
Consultant decided causa the higher doses I was needing to get any effect chest wise on Pred coulda been due to my body being to used to Pred after so long on it long-term!
Plus also the water retention side effects are alot less on betamethasone and they were causing me to keep too much water on that we just couldnt shift without changing steroids!
Basically weighed up pro's and con's with con and he decided Betamethasone would ne first alternative we tried but me no like the pain but me like the feeling I get in chest while its working!
Been on the 60mg equivalent since hossie nurse told me to up it but am seriously tempted to do as my mum wants and take the other tabs to make it to my 80mg equivalent dose!
12mg Betamethasone (24 tabs) = 80mg of Prednisolone!
Hopefully will be able to log a call to me from my gp if have remembered what her new working days are that is!
Meant to be mon and thurs so should be able to speak to her tomorrow!
I feel like taking every painkiller I can and am DUE too take (NO brufen as chest spat the dummy) and going back to bed as its only place pain goes off really!
Sorry if moaning over this seems pathetic, actually its making me feel very pathetic and sorry for myself right now!
Ive been sore while reducing pred but imagine soreness x 100 and ya may just get how bad it feels to me!
Well guess better go take my painkillers at least the due ones!
DF118 continus and my 2x top-up painkillers, paracetamol!
Thanks everyone!
Donna
UPDATE AND MOAN !!!
Have spoke to GP on phone after am surgery!
Am to up to 12mg of betamethasone (80mg pred quivalent) as she thinks that the change over has shown up the pain in joints and that the problem with my left knee that led to minor injuries the other day is definitely a bakers cyst that has popped within the knee joint!
The minor injuries nurse called the surgery to inform gp as she was worried I wouldnt!
Pain wise I've been told to use top-up painkillers on top of the DF118 long-acting tabs I take regular anyway!
If after 7 days of the 12mg betamethsone there is NO improvement she is gonna book me in for tests to check joints to see if the pred had been masking a problem that may now need treating!
GP doesn't want me over doing things but given I have already had to put off paying bills etc from last week I *have* to pay them tomorrow or we be cut-off!
Given despite my health I am mum's main carer too and her nominee with bills etc hence why it falls to me!
Now usually that aint a problem but given I am meant to be keeping weight off left knee at least I am gonna be crawling to post-office/co-op tomorrow to bill pay and pick shopping from shop for home delivery!
I know tomorrow is gonna be agony for me and because I already have a severe chronic pain problem along with the brittle asthma and 5 or 6 other medical conditions I think I am being very restrained right now!
I aint a quitter but sometimes being able to moan about to people who should understand is my only release!
The bulk of the older visitors here know me and know that I am not always negative but there is a limit anyone can take and I went past that a long way back before I decided to post on here about the betamethasone swap over troubles!
GP is also speaking to cons but doesnt want me back on Pred now the bulk of change-over is done despite the pain!
Pain can be controlled in various ways but you try walking in agony doped up on painkilers with a tens machine taped on to BOTH knees just to be able to stand upright or too edge up the stairs on my bum just to pee!
Sorry MOAN over!!
Perhaps now people will understand I am no quitter far from it!!
If I was then I wouldnt have been fighting my corner for over 14 yrs!!
They do hurt like hell when I reduce pred! The pain can be really bad so that could be your problem.
Kate
XXX
I'm kinda hoping Kate that the extra beta will kick in and do something but GP is keen to do more tests etc and get a bone scan done asap (on list for one but getting brought forward now)!
Oh and I been TOLD OFF in no uncertain terms NOT to risk anymore Brufen regardless of the pain!
She said (gp) that when I got the first response from chest to it I shoulda stopped it not the 3rd or fourth time!!
Its quite weird here mum thinks I am nuts with two electrodes taped to each knee joint from the 4 pad tens machine i routed out (errrrrrr had it over 12 YRS ago from pain clinic for someat else lol)
Got no idea how or if I can wear the tens machine on my knees while out tomorrow but am gonna try as its gotta be done tomorrow
Still am on the hunt for SAFE choccie tomorrow and loads of comfort foods (sour ice pops or even safe ice cream if I can find any lol)
I do get the feeling gp is just humouring me in holding off on tests till had 7 days of betamethasone at 12mg (gonna have to hide em in food 24 tabs worth) but she is good and will only let me try so far on my own without her pushing me to do as told!!
But she does know the situation at home too with being mums carer even thought aint well enough!!
Opps sorry whining again but am VERY worried how to get through tomorrow at least!!
Slight update!
Whether its the tens machine I hunted out yesterday or the extra Betamethasone (day 2 of 12mg) I am slightly yep less sore but am plugged in ready to move now lol
I hunted out my old TENS machine when I had a kidney stone recently as I was trying to avoid costa for pain releif, I know this is going to sound silly but I could not rememeber what was used as contact gel (between skin and pads) I had some recollection that KY jelly did the job so I used that. My step father has a frozen shoulder so I have offered him the use of my machine but before I hand it over with a tube a KY jelly can anyone confirm that I rememebered right about being to use it as a contact gel.
Bex
Bex yes KY jelly will work. Hope it helps!
I was told any water based contact gel will work but you can get tens gel from a chemist too!
Basically the change over of steroids has been handled well wrong and left me seriously low immune wise and have picked up a widespread infection thats made several joints swell and including the cyst that went pop!
And also have severe tosillitus and thrush to boot!
Temp was sky high and he say lymph glands were up widespread over body!
But basically treatments:
12mg (80mg equiv of pred) to continue until more stable
Antibiotics doubled as allergies mean its best one for what I have (have low dose repeat but MAX'd now)
Nystatin drops
Extra painkillers
And REST (did say bedrest) but persuaded him Extreme duvet rest was better lol LOL lol
Try espaining that to a gp lol
So can I say THANX for everyones support this last week as I couldnt have got through it without an avenue to let the moaning out in THANX again for caring everyone and I mean EVERYONE !!!!!!!!!
Extreme Duvet added to the list for the 2012 Olympic asthma friendly sports
Bex
How about extreme pillow propped up!! Sorry not very eloquent! Cant lie down cant move!! so propped up in bed!!
Bowmei- how about extreme reclining!!?? Im good at that esp in the eve i tend to go to bed asap and watch telly or read in a 3/4 upright position and it then drives hubby mad when i fall asleep like it as the pillows take up so much room!
Oh almost forgot he did throat swabs too lol
Aint happy about them as it wasnt particulalry sore till he prodded em lol
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