Prednisolone - 2 weeks on 20mgs - fearful and depressed.

Mat48

Hi All. Having reached 10/10 on the pain front last night and only able to shuffle about v slowly I decided that enough was enough and took the Predinsolone cortosteroids that my GP prescribed me for when I was desperate. Took 2 today this afternoon and evening and will graduate to 4 tomorrow and each tablet is 5mgs. Got a bit anxious because I'm desperately trying to lose more weight and the pain wasn't as extreme this morning. I had my inflam markers taken this morning along with thyroid check and hormonal markers re meno.

I woke up feeling less pain but uncharacteristically low. I don't really suffer from depression so this was a bit strange but I didn't sleep much as didn't take ibuprofen yesterday in attempt to keep the ESR and CRP checks as clear as possible. Now all is deep flushing heat up my legs and arms and I'm still feeling very low - have been all day and can't seem to shake it off? Feet and knees still v sore a lot but wrists and hands feel less painful although stiffness is the same.

I can't blame the steroids for the dip in mood because I was feeling like this from the start of the day and it's been a really busy day with work and social stuff too. It could just be exhaustion from heavy pain day yesterday but whatever i just feel like running away and hiding in a white cell for a month until i see rheumy next with just you lot in my pocket (or a laptop). Can't cope with all these pain free upbeat busy people all wanting things of me anymore - including family and close friends? i need them and love them of course but I can't cope with them now?

Am so worried from all that I read on here and from my experiences to date that they will just say it's your age, nothing we can do - bloods all too marginal (I had a low positive rfactor at 24 when last checked). I don't know what this pred steroid will do to me if I take 20mgs for 2 weeks and then how will it be afterwards? Will it still mask the symptoms for rheumy or will i then have two murderous weeks of pain - when will it all end? I'm really not coping - sorry all just dumping on you because nowhere else to turn? Don't reply unless you can be bothered just off loading thanks! Mat

magenta

Hi Mat,

Sorry to hear you're feeling so low and in so much pain. I've never had to take pred but many on here love them, they say they really help them with their symptoms. I'm sure you'll feel better in days.

Take care,

Magenta x

salamander

I've had 15mg of pred for a period of time and it really does help the pain. You just have to taper down the dose when you come off which takes a while but you shouldn't put on weight during this period of time. Sit back and enjoy it, I never felt so good as when I was on it!

Mat48

Yes I am now feeling silly for allowing self to be so self indulgent yesterday! My complete low was very out of character but I had day off ibuprofen the day before and was so shuffling with pain and stiffness by night time that I downed a load of whisky with a Zopiclone sleeping pill and two paracetamols and that must :roll: have driven me into a massive downer yesterday for obvious reasons - the places pain will take us to eh?!

And you are both so right - I only slept an hour or two as had insomnia from 2am - 5am and then had to take OH and a son to the airport at 6.30am so just home now feeling boggle eyed and preparing for next pred. Am determined to enjoy every moment as only on it for 2 weeks and will come down one at a time. How amazing it was to wake up pain and stiffness free, clamber out of bed and get clothes on without that scary snap crackle crack pop and barely suppressed moans and groans today wow why can't I just stay on this stuff forever again?!

Only thing that's bothering me is after I've come off them in 2 weeks time will it stay in my system masking symptoms for rheumy apt 3rd week November? Or will I have 2 weeks where I can barely lift a finger or walk down stairs or drive again? Terrified of both but would rather rheumy saw me doubled up shuffling with pain even if it means swallowing gallon loads of pain meds and not being able to do much at all for myself for ten days/ 2 weeks?

I know I know stop worrying Mat and enjoy the moment for pity's sake :roll:

suzygirl

Hi, I can't say how it will affect you for the rheumy appt. 2 weeks shouldn't make too much difference weight wise. If they help, then it should indicate to the rheumy that something inflammatory is going on. You had bloods taken before you started them, so the rheumy should have those results to go on.

Enjoy the pred, although take as early as possible in morning to minimise insomnia. Try not to do too much though, as it can be tempting!!

I always want to crawl into a corner and hide when in pain, it makes the best of us cranky.

Starburst

Hi Mat,

I was on zopiclone for over 2 years and mixed with alcohol, I found it made me very depressed.

Any decent rheumy will know that prednisolone will dampen your symptoms and take this into consideration. I had a glorious few weeks on 10mg and I didn't come back down with a bump back into 'agony land', although I slowly noticed the symptoms creep back. This was just my experience and unfortunately because we're all different, nobody knows.

I'm so sorry you're having such a difficult time getting diagnosed. Have you said outright to your rheumy - "could it be seronegative RA?" I had a borderline rheumatoid factor but they said it meant nothing. Also, if you're not getting any joy, speak to your GP about a 2nd opinion. You're entitled to it on the NHS. I got one and transferred to a new rheumy clinic and I'm now getting much better treatment.

You're allowed to be self indulgent. I spend a lot of time doing so. It's not always easy but you can get through this. You have us you lucky thing you!!!!

All the best. x

Mat48

Yes I am lucky to have you all I know it! I usually avoid Zopiclone as GP was reluctant to give it to me said use very infrequently and I do but I was SO desperate to sleep pain free - didn't even work I still woke wimpering! I do hope I am sufficiently pained when I see rheumy because last time I was in the tail effects of a big Kenalog jab and he was rather dismissive because I was the walking well on the day! If it's working this well on only 2 pills (10mg) each day so far do you think I we'd to take 4 - am tempted to stick to 3 and then come down slowly as insomnia each night could be a bit horrible especially when I'm back to work next week?

But this is different entirely because pain so escalated that I could hardly move or function on Thursday night so if ESR and CRP are high then I will feel less anxious about things as he will surely go by them too. Also my knuckles and fingers are constantly dark (bruising) and swollen now and I have photographic evidence too.

I think it's just that if I go in to see him in pain my mind will be sharply focused on getting a diagnosis now whereas if I'm in nice warm day release mode (or steroid release) from pain jail then once again he might just keep deferring my diagnosis and treatment?

But I'll try and stop fretting and take each day as it comes while on this delightful pred buzz! (insomnia aside). Don't think the second opinion counts for much where I live on an island. There were years when no rheumatologist even came here and patients had to wait a year to get to see one on mainland so I'm told I'm lucky to even have one?! Mat xx
Pa sorry this is SO long again - I've just so much to ask of you all?!

salamander

Only thing that's bothering me is after I've come off them in 2 weeks time will it stay in my system masking symptoms for rheumy apt 3rd week November? Or will I have 2 weeks where I can barely lift a finger or walk down stairs or drive again? Terrified of both but would rather rheumy saw me doubled up shuffling with pain even if it means swallowing gallon loads of pain meds and not being able to do much at all for myself for ten days/ 2 weeks?

I know I know stop worrying Mat and enjoy the moment for pity's sake :roll:[/quote]


They will take the steroids into account at your appointment so don't worry about it.

barbara12

Hi Mat dont feel silly about being self indulgent, I do hope you carry on feeling better, and I wish you well with the preds...like you say were would we be without the support of this forum.

Mat48

Thanks Barbara. I don't know whether it is because of the way I took the dosage or whether the inflammation was fighting with the steroids but last night when my friend who happens to be a GP (not mine!) was staying over but my left middle finger came up all painful and by middle of the night ballooned like a sausage with a split in the middle (middle joint) - the only finger left that hadn't misbehaved recently! By morning it looked heavily pregnant and all fingers were very stiff once more - and wrist acting fractured. No sleep - not even a wink!

So my pal told me this morning that I should be taking all four Prednisolone tablets in a single gulp with the stomach protector as early as possible and that way avert insomnia again tonight. I had assumed they were like NSAIDs and four hourly intervals although I don't know why because it doesn't say that anywhere?! Once again my silly old brain isn't working properly - not up to the job! Anyway just managed to drive son to maths coaching and walk the dog 4 miles on his lead with splints on but still ...so the pred is winning once more over the arther beastie! Fingers looking once again only mildly
Sausage like rather than the discarded split ones on the scrap heap! Mat x

dreamdaisy

If you are taking steroids then you do it as one dose in the early morning: this mimics the body's natural production. (I learned that on here courtesy of 'scattered'.) A fortnight or so should not see you piling on the pounds, it generally takes longer and higher doses for that or any of the other side effects to appear. I am down to 1mg per day (after five years on them even I became concerned about the long-term side effects PLUS I am fed up to the back teeth with taking alendronic acid) and yes, I can feel the difference - and not in a good way. Don't become reliant on them, Mat, they are not good for one but oh boy are they a lovely little treat every now and again. I shall remember them with fondness. DD

Mat48

Thanks DD- I will try not to become dependent on them of course. I think the problem would most likely arise if I'm not diagnosed or put on DMARDs this time round - as have been warned is likely to happen from being sero negative for anti-CCP. Then my GP would be left with no alternative if I can hardly walk or do much at all for pain and swelling as has been the case on and off for the last month. That's why I'm so keen for rheumy to see me in flare mode you see. I know they are supposed to go by symptoms but if that's all they have and it's not there before them on the day it will be much harder for me to sound focused and be properly persistent?

Mind you currently 3 days into pred now and I have to say that a lot of flare seems to be hanging on for dear life in fingers, wrists and feet - and now left elbow too! It did vanish instantly but then returned last night and today my friend made me have the four tablets at 7.30 am and its not had huge effect on current inflam? I'll keep going though but feel a bit cheated of a proper respite that I was looking forward to. How long does it normally take to kick in do you remember? Mat x

dreamdaisy

I was off all meds (apart from sulph) in January 2007, by mid Feb I was in a mess. My consultant gave me enough steroids for a short while - 4x5 mg for a few days, then reducing. I took the first four at about 2pm when I returned from the hospital and thought 'Here goes nothing.' Four hours later I felt so much better. Dinner's just arrived, will post more later. DD

dreamdaisy

Right, dinner consumed and jolly good it was too - the first meal I haven't cooked for far too long.

Steroids: they didn't affect the arthritis as such, they affected me. I felt better in myself, more able to cope, I gained a stronger mental approach to it all. For me they mask the worst of it, and so very beautifully. It doesn't mean it isn't there, it's just better hidden, better camouflaged. I am now learning to do without that camouflage - but do remember that we all react differently to the meds. I reckon the biggest secret of coping with it all is not to expect too much from whatever you are taking - that way you can end up being pleasantly surprised rather than disappointed. DD

Mat48

Thanks DD. You're managing to convey much needed wisdom and calm as usual. I think it's all about accepting stuff and going with the flow and trouble is because I feel somehow I won't be believed I also find it hard to believe my own body's messages. This arther does just seem to be lurking around and I had a taste of reprieve yesterday so my expectations were probably too high as you say - better to not have any at all.

I feel odd - worrying partly about what my inflam markers taken on Friday prior to steroids will reveal. Worrying about why it all seems to be creeping about still with middle and little left fingers both stiff as rods and with these pregnant knuckles - why have all fingers have resumed their stiffness - especially after periods of rest? It feels like the steroid is barely suppressing what my body wants to do to me and part of me just thinks the pain and swelling are needing to be revealed not hidden away lurking ready to pounce again when nobody's even looking or cares apart from me?

I can't seem to think about anything else, even though I've just signed up to do a part time masters degree and have two art deadlines to think hard about and endless people with expectations of me work wise and socially - who have absolutely no concept of where my mind or body are just now.

I'm so damned desperate to get a name and treatment so I can face up to it all openly instead of feeling locked into a private world of pain and anxiety. I just want to focus on my life and family again like the rest of my friends and colleagues appear to be doing. Blah blah moan moan sorry!

Now I'm going to find out about something my friend told me about called Dragon I think - which types for you re this MLit that I'm possibly going to be undertaking and make a concerted effort to pull myself together really! :oops: Mat xx

dreamdaisy

You are in the early stages of all this, Mat, and yes I can understand why it is bugging you so much. My 'decline' was gradual, one joint then the parallel joint a few years later, then it all began to speed up but now I have fully grasped that it is beyond any form of medicine to 'cure' it (which was a first for me, I was used to drugs sorting stuff out such as my eczema and asthma - and recently the penicillin!) and yes, I am far more equable about it because for my own sake I have to be - all the worry and fretting in the world is not going to change it, neither is focusing on every little twinge and ache (which oddly enough may not all be arthritis-related - after all I am getting on a little now!) 'Stuff hurts, it's hurt for years, it ain't gonna stop hurting so get on with it girl' is my way of thinking.

Everyone's version of this malarkey is different, it is unique to them and how they react to the meds (if applicable) and cope with it is also unique. I don't give the arthritis as much attention as I used to, it was far too demanding and petulant a lodger but I have had to alter my life to cope with it. So what? It is what it is, it isn't what it isn't, don't make it what it can't be.

If you sign up to do things then of course people will think you are OK - in putting yourself forward you are sending out the message that you are and that is a good, positive thing. I wish you well. DD

traluvie

Hi Mat..

Just catching up on your post..
How have you been on the pred???
I know most people do get benefits from it..I felt alot better on them as DD said kind of give you that inner strength..I normally have the injections but i have not had my recent one as i am trying not to depend on them too much, vut if i was having a very bad flare then i would not suffer..
Don't feel guilty/bad for taking the pred, if you need it you need it, if it makes you feel better and makes you able to function day to day then hey ho it's worth it..
Hope you feeling bit better..xx

Mat48

Thanks both - Tracy great to have you back waving at me!

DD the problem for me is being undiagnosed and not yet being on any disease modification treatments. I do not expect a cure and am starting to realise it's unlikely to disappear like some of the post viral arthers do. Once I know what this is I will be far more accommodating or confrontational of it if I feel I need to be. I'm very bad at uncertainty and uncertainty combined with pain, swelling and stiffness is putting me in a bad place just now.

I do know it's early days but I'm just a very impatient person. I'm all for making lemonade but have to know that I'm getting lemons rather than grapefruit or beetroot or an even less favourable fruit/ veg to make progress again. Once i know what I've got I'll deal with it I do promise you! I agree that by applying for something you are sending signals that all is fine but I did also mention that I've been unwell and this is contributing to my decision making re changing life directions from making with hands to thinking with brain more! Fingers still a bit uncrossable but here's hoping the Pred does a bit more for me each day.
Mat x

traluvie

Alot of us are impatient Mat,
Trouble is not everyone can get a diagnosis, some go for years and some never exactly know whats wrong with them..
The trouble you have with hands/elbows wrist etc sounds very much like what i was like at the very beginning.. now i am on hydroxy, things are better and the pain not so intense.. so i hope that you too will feel better soon..

Mat48

Did you get a diagnosis then Tracy - or is it still simply called inflammatory arthritis - or OA perhaps? Sorry not been on this site long enough to remember everyone's stories!

The pred is making things easier in that I can walk about and not just shuffle as last week - but feet, and hands and wrists and elbows still all very stiff and sore. Hopefully it will kick in more and I will get a diagnosis in 3 weeks time but I know there are many out there who don't so am trying to prepare for that eventuality too. But to be honest I don't think I can live like this for too much longer because when it totally takes my whole body as it did the other day I get really scared and it does seem to be getting worse and worse very rapidly so I do really need a name and medication to help me manage it better or I think I will seriously go nuts! I don't know how others bear the relentless uncertainty really? I feel so incredibly sorry for anyone who has had to live with this level of uncertainty for years. Mat

dreamdaisy

I remember the un-diagnosed bit very well: 1997-2002 was five years of an increasing left knee and being told by the GP it would all go away (which it did but only after a pretty big operation!) I began the sulph in Jan 2002 and hoped that the op in Feb would sort it but it didn't. The op was repeated eighteen months later as all the swelling was back, other meds were added along the way and by late 2003 I had a tentative diagnosis of an 'inflammatory arthritis' (that was when the right knee joined the party). They finally narrowed it to PA in late 2006, nine years after it all began, 4 and 3/4 years after I started medication, but that was all that was changed, just the label. Having it named made very little difference, but I do rue the five years where I believed a lazy and incompetent GP. DD

traluvie

Mat48 wrote:

Did you get a diagnosis then Tracy - or is it still simply called inflammatory arthritis - or OA perhaps? Sorry not been on this site long enough to remember everyone's stories!

Mat my diagnosis at the moment is inflammatory arthritis as they are not 100% sure what type i have due to my bloods being ok, but bone scan showed inflammation in various joints..
I have OA in knees and fingers and am awaiting results from hip xrays as my mobility a big problem for me at the moment..
My symptoms started last september with a pain in my finger and quite quickly the pain and swelling of my finger went to hands wrists elbows shoulders etcc.. i was very frustrated and scared.. i was just lucky my rheumy believed somethig wasn't right as i know many people have to fight and try and convince medics that something isn't right..I have got my head kind of around arther now and have learnt to adapt my life around it...Having the support of the forum and understanding medics has obviously helped with the way i feel now..
When is your appointment again??

kellis

Mat - I read your original post and it struck a chord as I have this morning in desperation taken 20mg of prednisolone after similar shuffling about for a couple of weeks!
I, like you, have an emergency stash for when times are tough. I was told by my rheumy I could take 10mg for 7 days and then stop without worrying about reducing the dose. Last time I took 10mg it didn't touch me, so I've taken 20mg today and am hoping for a brighter start tomorrow morning than I've had in a long time.
My question is therefore, how many days can I take 20mg for without the need for weaning off? I was thinking a couple at 20, a couple at 15, a couple at 10 and maybe a couple at 5. I know self diagnosis isn't ideal, but I'm in France and getting hold of my rheumy and asking her is a bit of a nightmare!

Mat48

Hi Tracy. I think you are obviously calmer and more patient person than I am - maybe feeling that rheumy and team of support believe you helps with this. Our timing of kick off is roughly the same. With me it was wrists, knees then feet and fingers. Had lots in shoulders, a bit in elbows and neck and lower back but nothing at all yet in hips thank goodness.

When you say bloods all clear are they looking for sero-negative RA and have your inflammation markers been okay? Mine were quite high but not soaring like some - around 60 at first then coming down to 30 at last check. At what stage do they decide the disease is active and you have sero negative RA? I suppose you are on some medicine and it sounds like hips are probably OA which they don't treat with drugs apart from standard pain meds. But I feel mine is very weird as I don't seem to swell much but it's been a very Polyarthritis (moving about) to date and I've read that is usually a sign of autoimmune arther as OA tends to find a joint or several and make itself at home. Do your fingers swell and hurt at lower joints or top ones and do your knuckle bones swell too? That seems to be the most distinct difference as far as I can ascertain!

Next apt is sometime in on 23rd - 25th Nov but because rheumy is so overstrerched they don't confirm you are in this list or your date and time until about a week before - great eh?! Mat x

Mat48

Hi Kellis. Are you in France for holiday or short work thing or do you stay there? If the latter you might find you get better treatment over there? I live on an island off North of Scotland so almost as helpless as you but my GP prescribed the pred and is responsible for my medication day to day and I can always phone him or colleagues during weekday working hours at least. He told me to keep taking 20 until about a week or ten days then wean off one less a day taking ibuprofen to replace as he's already prescribed 3x 400 mg per day so back on that as I come off he said. I just don't know is the answer because you maybe haven't got 2 packets as I have - as I was prescribed 20mg per day? I am feeling better today but my joints still ache and I'm still stiff - especially fingers which is a pest as loads to do.

I did also wonder how long it keeps the swelling at bay once you are weaned off it as only had injections before?

Don't worry about self medicating. I have to as well and decided last night to double my dose of Amiltriptyline to 20mg without GPs consent as it helps me sleep. My friend phoned yesterday and says she has 25 mg of Ami for an aching labia so I thought well what the heck then..? Did sleep okay actually and I find it quite sedating and calming also. You can always phone the helpline in Arthritis Care for advice I'm sure? I can't phone rheumy - have no access to him other than through GP or head physio who sits in on my apts and has just won a big award I hearY today for setting up a video conference thing for rheumy patients to the main hospital on mainland. My GP doesn't approve says how can that possibly work just NHS trying to tick rheumy boxes to comply with NICE guidlines! Mat x

traluvie

Mat48 wrote:

Hi Tracy. I think you are obviously calmer and more patient person than I am - maybe feeling that rheumy and team of support believe you helps with this. Our timing of kick off is roughly the same. With me it was wrists, knees then feet and fingers. Had lots in shoulders, a bit in elbows and neck and lower back but nothing at all yet in hips thank goodness.

When you say bloods all clear are they looking for sero-negative RA and have your inflammation markers been okay? Mine were quite high but not soaring like some - around 60 at first then coming down to 30 at last check. At what stage do they decide the disease is active and you have sero negative RA? I suppose you are on some medicine and it sounds like hips are probably OA which they don't treat with drugs apart from standard pain meds. But I feel mine is very weird as I don't seem to swell much but it's been a very Polyarthritis (moving about) to date and I've read that is usually a sign of autoimmune arther as OA tends to find a joint or several and make itself at home. Do your fingers swell and hurt at lower joints or top ones and do your knuckle bones swell too? That seems to be the most distinct difference as far as I can ascertain!

Next apt is sometime in on 23rd - 25th Nov but because rheumy is so overstrerched they don't confirm you are in this list or your date and time until about a week before - great eh?! Mat x

I reckon i have patience as i have 2 children lol

I had bloods done for ESR,CRP,RF factor, vitamin d(which i have vitamin d defficiency) and auto immune.. there was nothing that came up which obviously confused rheumy as i had swelling and inflammation..It was only through bone scan that my inflammation showed up in elbows,hands,wrists,ankles and feet, which confirmed i have some sort of inflammatory arthritis..
Now i am on lots of meds my swelling is very limited which i am grateful for.When my hands do flare i can get pain in upper and lower joints of my fingers, and shooting pains too, my knuckles do occasionally swell and can be red and hot to touch..Since starting on the disease modifying drugs my hands are a lot better..I was started on treatment after my bone scan, i have been on hydroxy now for around 7 months..
My hips the rheumy mentioned could be sacriolitis am just awaiting for results..
So you have another few weeks to wait for rheumy?? have you been keeping a diary to show rheumy? also write a list of questions down just so you don't forget when you go there lol, last time i recorded my session as i am so forgetful lately lol..x