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montanawoman 
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Joined: 11 August 2009
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 Topic: Stuck at 9 mg. and hurting!
Posted: 03 May 2011 at 2:56pm |
Hi all,
I've been at 9 mg of prednisone since February. I haven't felt all that great since going to 9. My hips have that horrible burning pain, shoulders too, but they're not quite as bad. I couldn't even manage going to the grocery store today after working my part-time teaching job! Just needed milk and bread. Yikes! 
I think the last time I felt really okay was when I was at 20 mg., but I know at can't go up that high. I'm 2 years into this d#@! disease and feeling really down with the pain and limitations. I know it could be worse, but it's hard to make the best of things all the time.
I was just reading on the UK form about Pauline, who seems to be stuck where I am. Mrs E., you told her she might try to take the prednisone on alternate days. Since I am on 9 mg., would I take 18 mg. one day, skip a day, then take 18 mg. again, skip a day, and so on? I'm thinking of giving it a try. Or if I went up to 10 mg., could I take 20 mg. every other day? I really would like some relief. I take tramadol, as well, but it doesn't help a whole lot. Last summer I tried methotrexate and couldn't handle the side effects.
This forum helps me to feel not so alone. Thanks.
Jannie
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MrsE
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Joined: 09 July 2010
Location: Italy
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Posts: 370
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Posted: 04 May 2011 at 4:01am |
Hi Jannie, sorry you're having a bad time - really know how you feel as I've spent the last 6 or 7 months on a higher dose than I had been on and really struggling to get down. I haven't been back to that burning hip pain though, thank goodness! Couldn't face that again whatever they say about getting the steroid dose down :-(
To switch to alternate day dosing think about takingyour dose on day one and day two, day one, day two. OK? Then you start by increasing the dose on day one by a small amount and reducing the dose on day two by the same amount so that the total dose over two days is the same. Then increase day one a bit more, decreasing day two by the same again. You do this until you are taking the entire dose for the two days on day one and nothing on day two.
So you would have:
Day 1: 10mg, day 2: 9mg. Total 19mg
Day 1: 11mg, day 2: 8mg. Total 19mg
Day 1: 12mg, day 2: 7mg. Total 19mg
continue like this until you get to
Day 1: 19mg, day 2: zero. Total 19mg
I'm not quite at 2 years yet but I changed to the alternate day regimen about this time last year. I've tried all winter to get back down from 20mg/2 days with no success until about 7 or 8 weeks ago when I decided to be really sneaky and reduce half a mg at a time - so the equivalent of one quarter of a mg/day! So far it is working - fingers crossed!
What surprised me about a month ago was when I went flying whilst skiing and tore my knee ligaments. Last year I fell of my bike and really suffered and had to up the steroids afterwards but this time I really felt an adrenaline rush - you know how you do when you have a shock like that? - the day I fell and spent the day at the hospital getting it x-rayed and sorted out. I felt pretty rubbish the next day but then was OK again - I didn't need more steroids and continued with the reduction, I go down half a mg every 10 days or so, no problems! I saw the doc 2 weeks ago and he was amazed at how well it had already stabilised and today they said I can take the brace off when I'm at home and at night as the knee is totally stable now. So much for steroids slowing down healing!!!!
I'm sure my body is recovering from the steroid effects now I've had a year on the ADT - and that is the point of the regimen. Your body has a good 36 hours in every 48 with no steroid effect so it all starts to work properly again. If you can get on to it quickly there is no adrenal suppression the experts say - but you can't go onto it until you are down to 10mg a day which with PMR takes some time. It isn't suitable for using if you have GCA and some people don't get enough effect for the entire 48 hours to be pain-free and find the second day gets a bit more uncomfortable - I'm noticing this is improving as time goes on, but it was worst during the evening and overnight of the off-day to the next on-day of taking the pills. As time went on I noticed I felt better in the morning of the on-day even before taking that day's dose. I also find that taking the pills as early in the day as possible makes me more mobile and pain-free in that morning before the new dose works.
I really think it is worth trying to see if it works for you. The books say that for some people the ADT works well for a day and a half and then some doctors will give a small dose of a short acting steroid such as hydrocortisone (I think) to help with pain on the second day. Pred remains in the body longer than hydrocortisone so taking pred on alternate days gives the body a rest from the steroid effect but the hydrocortisone is so short acting that it helps the inflammation but doesn't mess up the adrenals etc again. If you do have problems like that I could look for the references again so you can discuss it with your doc - I can't remember, do you have a doc who treats you like a sensible, intelligent human being or have you got a "I'm the doc and I know it all" type?
Anyway - hope this helps and that it works for you like it has done for me. Feeling too bad to get the bread and milk on the way home from work is hardly the way we need to be! I'm just so in awe of anyone who manages to hold down a "proper job" with PMR! I'm freelance - no travelling to the office!
cheers, Eileen
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Not a Newbie to PMR - just to this community!!! Hi all!
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montanawoman
Senior Member
Joined: 11 August 2009
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Posts: 108
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Posted: 04 May 2011 at 3:19pm |
Thanks for all the information, Eileen!
I'm wondering how long you take between going from day 1: 10 mg, day 2: 9 mg. before switching to day 1: 11 mg, day 2: 8 mg. Do you know what I mean? Would I stay at day 1: 10 mg, day 2: 9 mg for a few days or ? before going to day 1: 11 mg, day 2: 8 mg and so on? I'm having a hard time forming my question, must be brain freeze today.
I called my pharmacist and asked about 1 or 2 mg methylprednisolone tablets so that I could split them into 1/2 mg. doses. I guess the U.S. doesn't make generic tabs in that low a dose. Right now I use the 4 mg. tablets, which is the lowest dose I can get. I split these into 1 mg. pieces with a pill splitter. I can get 2 mg. of methylprednisolone in the name brand of medrol, but it costs ten times as much, and that I can't afford. Gosh I feel like I know too much about pharmaceuticals these days!
I printed off your reply, and plan to show it to my rheumy on my next visit on June 7th. She really is a good doctor. I had to switch to her from my first rheumy who, shall we say, was NOT a very good listener? I could say other things, as well, but not nice for a forum. My new rheumy is very supportive and is really open to what I have found out on my own.
Anyway, I'm babbling. I read this and the UK site almost daily. Sometimes I don't contribute for awhile and then I can't seem to stop! 
Hope you're feeling well,
Jannie
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freesia
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Joined: 19 June 2010
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Posted: 04 May 2011 at 6:29pm |
Jannie, I'm in the U.S. and I get 2.5 mg and 1 mg tablets! I can't imagine they are not available in Montana, too. I'm sorry you are having so much trouble. I also don't see how you manage to hold down a regular job while having PMR! You're a champ!  freesia
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MrsE
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Joined: 09 July 2010
Location: Italy
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Posts: 370
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Posted: 05 May 2011 at 3:08am |
Jannie - I don't think there is any reason why you can't just do it on consecutive pairs of days - in fact when I switched over I did 10+10, 15+5, 20+0 on consecutive pairs of days with no problem at all, it wasn't until later I found out you are meant to do it a bit slower! So it would be fine to try it in 2mg steps which would mean just halving the 4mg tablets. As freesia says, I would surprised if you can't get generic 1mg tabs - you'd think there must be people who need lower doses on a regular basis, but maybe it depends on the pharmacy and they reckon a pill cutter and 4mgs will do fine.
I'm so glad you've got a nicer rheumy now - it makes such a difference when they admit they don't know it all and can learn from their patients. Having the confidence to admit it makes them a better doctor I think. And to be fair - why should they know a lot about PMR. It's reckoned that in the UK a GP practice with several partners might have one or two patients so some of them may never have met it. And rheumatologists have predominantly much more severe forms of arthritis to deal with and tend to perceive PMR as a minor problem - it doesn't kill or deform. You have to live with it to know the limitations! 
Eileen
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Not a Newbie to PMR - just to this community!!! Hi all!
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linnie
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Joined: 29 December 2010
Location: somerset uk
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Posts: 26
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Posted: 24 May 2011 at 3:38pm |
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hi ......sorry you are hurting. i have been on 10mg for a while and was hoping to start going down but no,all the familiar aches and pains have started to come back and the extreme tiredness wears me down.my doc said to go back to 12.5 mg but i feel such a failure,bloods are ok this time,not sure if to stay and see if it settles down or go all the way back up to 12.5.thought i was homeward bound.....silly me! would welcome some advice.....hope you work out some way also .take care x
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bye bye size 14!
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Celtic
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Joined: 25 June 2009
Location: UK
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Posts: 201
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Posted: 25 May 2011 at 12:31am |
Hi Linnie
Sorry to hear you're having a return of symptoms. I suspect that you are a sufferer who started out with high markers if, as you say, your blood tests are "ok this time". In that case, I am a little surprised that although the present markers are "ok", the pains are returning.
I had very high inflammatory markers at the outset of the illness and if ever my pain increased then my rheumy and I could guarantee that my markers had increased as well and subsequent blood tests confirmed this so I consider myself very lucky to have been able to use the blood markers as a guide through my reductions. There has been only one exception when I suffered increasing pain (I was below 5mg dose at the time) and arranged a blood test only to find that the markers had remained at normal so I hung on in there at the same dose and eventually the pain eased.
You don't say for how long you have been on 10mg and whether or not the pain has been gradually increasing over more than a couple of weeks rather than that initial increase of pain we tend to get from steroid withdrawal. It could be that perhaps you had some physical stress when feeling good that has resulted in a bit of payback. As far as the fatigue goes, that is a symptom that really never went away for me until on the very low doses and even now on 1mg and trying to get to zero I can still fall asleep at the drop of a hat!
Only you, Linnie, can tell whether you feel the pain is bad enough to warrant an increase but please don't feel a failure if you feel the need to increase the dose - you're quality of life is important here and why suffer undue pain if a slight increase would give you back that quality of life? If it was me, depending on how much pain I was in and how long I had been at 10mgs, I would probably stay on the dose for another couple of weeks to see if the pain resolved (at the same time taking care not to overdo things). Then if the pain was still bad, I would ask for another blood test to see if there had then been any increase in markers and, if so, I would then increase back to 12.5. Having said that, if you have already been on 10mgs for much longer than a month or so then it may be necessary to increase the dose, remembering that it is very common to have flares in the first 12-18 months of treatment.
Very best wishes.
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Pearl
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linnie
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Joined: 29 December 2010
Location: somerset uk
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Posts: 26
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Posted: 28 May 2011 at 2:38pm |
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pearl....thank you so much for your reply.it was so helpful and a lot of sense.my first blood test in oct 10 was very high and only came down very slowly.been up and down from 15 to 12.5 on pred then tried 10 which i was hoping was ok. i have had alot of stress at work,being with certain members of staff increases my hot flushes also.i do push my self as i like to get things done but after reading alot of these replies on here i need to re think the management of this illness. i wish now i had perservered on ten and not gone back up to 12.5,but was feeling really poorly and had no incentive even to walk my beautiful dog,not like me! this was the first time my blood did not reflect how i was feeling plus my right hand is so painful and swollen ,dr says it is to do with tendons overworked,must be to do with PMR also.feeling so confused and fed up.....people just do not understand and i try not to bore them about it.sorry to moan.hope you are ok please reply thank you x
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bye bye size 14!
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Celtic
Senior Member
Joined: 25 June 2009
Location: UK
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Posts: 201
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Posted: 29 May 2011 at 3:23am |
Linnie
Please don't feel that you are "moaning" - over on the UK forums we all know that we can unburden and get things off our chests, and KNOW that everyone listens and understands.
I've just noticed that you are posting from the UK and I'm not sure whether you have been on the Patients Experience PMR Forum there - we also have our own PMR-GCA forum now and I post as "MrsO" on both.
There are some people who post on the UK forums who, like you, also work, and us older people who have retired always feel so in awe of younger people suffering with PMR who still manage to work. As you say that you are suffering from stress at work then that obviously doesn't help at the moment.
However, I hope you are having some relief now back on 12.5 and especially are able to walk that "lovely" dog again. I can so emphasise here - my golden retriever was on her last legs (bit like me!) whilst I was 'holed up' upstairs in bed for several months during my first undiagnosed and therefore untreated year with PMR. She would never climb the stairs but used to sit at the bottom talking to me at the top! I felt really guilty that I wasn't able to give her little walks in her last days. So, much as we hate steroids, at least they enable us to lead as normal a life as possible.....and walk the dog!
I haven't suffered from hand swelling and pain, apart from in the very early PMR days when it seemed to stir up an old injury (RSI, for which I wore made-to-measure splints) in the base of my thumbs and for a while they were particularly painful on waking. Steroids can cause fluid retention so perhaps this is the culprit in your case. Plus, as our muscles weaken from the steroids it is so easy to injure them. Perhaps MrsE will be able to add more advice in this connection as I know she has suffered from hand pain.
If the pain has now eased on 12.5, then I would give it a good couple of weeks to ensure that the inflammation has well and truly stabilised and perhaps then get a blood test before trying to reduce again. Then, as you have already experienced worsening symptoms on the 10mg dose, perhaps you could try a very small reduction of 1.5mg, even doing alternate days of 12.5 and 11.5 for a week at first. It's very much a case of finding what regime suits you personally, and always remembering that any pain that appears immediately on reduction may just be steroid withdrawal pain while the body adjusts as opposed to pain which appears a few days later and continues to worsen over the next week or two.
My very best wishes.
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Pearl
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linnie
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Joined: 29 December 2010
Location: somerset uk
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Posts: 26
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Posted: 29 May 2011 at 2:32pm |
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again thank you.i will take in all you said.i did nt realise the steriods weaken muscles.i have an artifical joint in that wrist but dr said it was tendons,could that still be PMR related.my dog has been one thing keeping me going.she is a beautiful tri coloured collie who,even when i feel so rubbish,we have a walk and it makes me feel better.work is mostly ok,but at moment i am tempted to have a few days sick.i had four weeks this time last year and did not know what was wrong,feel really guilty though. take care.....keep well and thanks again lynn
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bye bye size 14!
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