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.
Day 1: 11mg, day 2: 8mg. Total 19mg
Day 1: 12mg, day 2: 7mg. Total 19mg
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!
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!
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!
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
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 xHi 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.
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 xLinnie
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.
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 lynnLinnie
I can just imagine how adorable your collie is.....probably highly intelligent too - we have had two Welsh border collies over the years and I think they're so in tune with how we feel. It's good that she gets you out for a walk every day as in the early days of my PMR I found even if I could only manage 5-10 minutes, I always felt better for it afterwards - it apparently releases those feel-good endorphins, as does any exercise (I find particular benefit from Tai Chi). I don't think you should feel guilty if you are suffering from PMR and need to have time off sick - you have got an illness after all and, as I said yesterday, I'm absolutely in awe of anyone who has to work through the early days of this illness. Look after yourself - lots of TLC!
Hi everyone not posted for a while sounds daft but not been well and been very depressed and frustrated. i to have been trying to reduce steroids and was in terrible pain last week went back to my gp in such a state he didnt want to up the steroids again until i see rheumy on 20th june, i am on 8mg at the moment. he has prescribed something called arcoxia 120mg been trying to read up on them and this seems quite i high dose but they really have worked for me pain is so much better. hope this may help.Hi lynseylou
I'm sorry to hear that you have been suffering from increased pain and other symptoms recently but am glad to hear that the new drug is giving you some relief. I believe it is an anti-inflammatory and I was advised not to take such drugs as the anti-inflammatory Ibuprofen alongside the steroids. Plus, I am inclined to be pill-phobic anyway and worry about drug interraction. I relied on increasing the Prednisolone wherever necessary without taking any other painkillers and concentrated on trying to eat as many anti inflammatory foods as I could. However, I do know that some PMR sufferers do take such drugs alongside Prednisolone but usually only for a very short time, with no ill effects. It is quite a short time to your next rheumy appointment so hopefully you will be able to get some good advice then. Very best wishes.
Hi Lynseylou,
I am not expert, but I was also told not to take other anti-inflammatory drugs along with steroids.
This prednisone reduction is a hard thing to do! I am also trying to taper and having to make some adjustments myself. I am hoping to be at the dose my rheumy wanted by my appointment on june 27th (back to 17 1/2 mg). But the increased pain and just not feeling well is hard to cope with. I am on 19 mg now and hoping to try alternating 19 and 18 in another week. This PMR is difficult enough to cope with, but that feeling that things are getting worse rather than better just throws me over the edge.
Hope you are feeling some better today.
hi all i have been on anti-inflamotarys all along my rheumy decided because i was still in pain at the beginning that it may be due to the fact that i have got oesteo, although i didnt need to take anything for it before i wad diagnosed with pmr, The rheumy that i am going to see is a new one was only diagnosed in february and was started on 15mg for 2 weeks then down to 10mg then after 4 weeks down to 7.5mg everyone on the forum thought this was all to quick but couldnt convince rheumy. when i dropped to 7.5 got a chest infection and had to take antibiotics so went right down hill again dr did up steroids so i was taking 10mg 1 day and 7.5 another for two weeks then told me to drop back to 7.5 that was when i went totally down hill again. Suppose i feel pmr as never really been under control but the pain as i say is a lot better now, just hope when i go and see new rheumy who is at a hospital that specialises in arthiritis that i can get sorted out. Find it very hard to stay happy sometimes the illnes is really getting to me and i work full time as well think the worst part is no one with this disease looks ill so people just dont understand and i personally feel i moan and groan an awful lot but i am just so frustrated. Glad i came back here and got all that out at least there are people here who understand. Hope some day soon we are all free of this terrible disease
Hi Lynseylou,
Know what you mean about looking well but feeling terrible. I have the moon face and hump in my back from the Prednisone, but otherwise do not look too bad until you see me walking. My P.T. has me using 2 canes now or walking sticks to help my gait and people Sunday thought I was worse just because they saw the second cane!
Boy, ditto on the moaning and groaning. Mine is worse at night and I am not even aware of doing it sometimes. I am a little better now getting therapy and my dose of Prednisone is better.
hi nanatjjj makes me feel a little better to know i am not on my own, can i just ask you about the walking ? what i have found is that since most of the burning pain has gone i have got pain in my hip which is making me limp it doesnt just feel like stiffness do you think this is associated with pmr. The highest dose of pred that i have been on is 15mg but have got moon face i had already put weight on before i was diagnosed due i think to the fact that i couldnt get about and do anything, walking upstairs was a nightmare and still is at times, its so hard because part of me doesnt want to up the steroids but until going on the arcoxia would have taken anything for a bit of relief.Can i ask how long you have been ill ? Does anyone on the site know of anyone fully recovering. I do go swimming and find the water really helps but find it difficult because its hard getting dressed in confined spaces. Sorry for going on but feel i need all the info anyone can give me.
regards lynn
Feel like screaming. Just wrote you a 3-4 paragraph reply and the darn server crashed as I went to send it. So I am going to test it first now.
hiya..... what you said about your hips is to do with PMR.i had a bad bout of hip pain/burning at christmas and was limping ....over night it also changed hips,sounds bazzare,but true.had pred increased slightly then it went away.also fed up with people saying about my face,have terrible hot fluses all the time so i have a big fat RED moon face....so attractive!does get you down does nt it?can t seem to pull myself up and feel positive,people ask how you are but get bored when you say,even though i dont talk about it very often.feel so sorry for all of you guys on here.does anyone have problems work wise with PMR? lots love keep well x
hi pearl yes she is very intelligent,too much somtimes.there are some really good replies and info today,everyone is so caring and you really feel you can let off steam without feeling guilty,thanks all,helps so much.take care x
Hi Lynseylou,
Well, I tried to post again and the site told me I had posted too many times in one time frame. I thought, Huh????
Anyway, here is another try.
I was diagnosed in January after 5 days of going downhill after Christmas. I could not get up from the bed or chair or off the toilet. My joints were swollen and my hips and arms hurt. My regular M.D. gave me 60 mg of Prednisone for 5 days which worked great (no diagnosis at this point), but then I crashed on day 6 without any steroid. Finally saw a rheumy mid-January who suspected PMR right away and possible some RA. I already have osteoarthritis (bad right knee and left ankle) and fibromyalgia (currently the probable cause for the left outer hip/thigh pain. Since the literature says that PMR mainly affects the hips and shoulders, I think your hip problems could be PMR related. My gluts are so weak, that I cannot stand more than a few minutes at a time. This muscles weakness is from my PMR and also the Prednisone. I am getting physical therapy now and my therapist says the weakness then contributes to the pain as the muscles try to work harder and also cramp up.
I am not sure how you make it up stairs. I can only do 1 or 2 stairs max and even then I avoid them. Luckily my bedroom is on the first floor.
As far as fully recovering, I know the literature says some do, but I do not know the percentage. There are also those who recover and have relapses and those who require a low maintenance dose of Prednisone indefinitely. My rheumy told me it would take 2 to 2 ½ years of being on Prednisone. I was shocked when I first heard that. Now I understand more.
The extreme fatigue seems better, but I think we get muscles weakness from the PMR and the Prednisone can cause some muscles wasting. So my rheumy and I decided for me to try some P.T. to work on strengthening and also that hip pain that may be FM related. Whatever the cause, it was keeping me from sleeping and that just is the icing on the cake when you are not sleeping! I am already sleeping better.
I wonder if some P.T. would help you with the hip pain? You might ask your rheumy about it.
Back to the Prednisone. When you went from 10 to 7 ½, that was a 25% drop. No wonder you had trouble and went downhill. The literature recommends not more than a 10% reduction and then we are supposed to stay on that dose for 2 weeks to see if we can adjust to it. Problems that start and go away, they say are steroid reduction related. Problems that start and increase are more PMR related. I found that I had trouble going from 17 ½ to 15 mg last month and that was about a 14% reduction. I have a good rheumy, but even with him I am trying to make suggestions without being too assertive.
I would love to start water exercise too and have a great pool at the senior center. But I cannot manage the walk from the parking lot, in and out of a suit, the walk back, etc. The part in the water would be great, but someone would need to put me in a sling and plop me into the water to do that now!!
Hope you are feeling better. Keep posting. I will try to answer your questions and hope that others with more expertise will post too.
Hi linnie thanks for the post so grateful the people on here are so lovely. Know just what you mean about the hot flushes me to and i never sleep longer than 2 hours at night without waking up with one. As for the moon face and the weight gain feel like i am always trying to justify this by telling people i am on steroids and most people dont know what this means anyway. I work full time fron 8am to 5pm i really struggle some days just getting out of bed feel so depressed, although i am told this is part of the illness hate taking time off but sometimes it just gets to much. The problem is when i am at home it does me no good because i get frustrated at the things i cant do. Really feel that the support people with pmr are given is absolutely rubbish, I have received no support at all and without speaking to people on this site wouldnt know what i was dealing with at all so god bless you all.Hi Nanatjj After reading your recent post i feel quite lucky at least i have not got all that going on must be really hard for you to keep positive. At the moment i am managing the stairs and only have to really pull myself up the last few Think i probably would have ended up in the same position as you but got to see a rheumy pretty quick first time round privately, and although he didnt diagnose pmr because inflamation levels where up decided to give me a steroid injection this worked amazingly and i felt like a new woman but it started to wear off after a month and i went down hill very rapidly, this was when pmr was diagnosed. Hope you dont think me rude but can i ask your age i am 53 and my mother who is 75 just cant grasp the fact that i could be less able to do things than she can. It hasnt been that long for me but beginning to forget what it feels like to be able to do normal stuff cant imagine what it must be like for you with the other things going on. Hope today is a good day for you and thankyou for your help.
Kindest regards to all lynn
Hi Lynn,
I am 64. My rheumy thought I was young to have PMR, but after reading more on the subject, there are lots of patients in the 50+ age group. I know what you mean about older people not being able to understand the illness. I look at seniors who are in their 70's and probably 80's and they are zipping along without even using a cane! Oh well, we are all different. And we tend to look OK on the outside. We have the blessing of no joint damage as those with RA have, but we still have the pain and stiffness and disability!
You mentioned the hot flushes. Not sure I have seen that posted before but I do have that problem too!!! I wake up every 2 hours either with pain, stiffness, or a hot flush. I am way past menopause (had that in my late 40's), so I was wondering if this was disease related or Prednisone related. My husband says my thermostat is way off! I am usually hot, rather than cold, even during the day. He will bundle up and tell me his nose is even cold and I still accuse him of turning up the heat or (now) turning down the A/C.
My left hip is hurting more since the P.T. worked on it with massage yesterday. I am going to have to ask her to back off that part of therapy. There is such a delicate line between help and aggravation of the problem. I think the ultrasound is helping, but the massage is too much.
Another day. I try to stay active even with pain issues. Hope to go see the grandsons today and spend some time with them at the lake. Their town has a lake that the city put sand on so we call it our "beach".
Hi folks - hot flushes: can be either the PMR or the steroids - I had them with the PMR before dx and lots of people get them with the steroids. A few of us over on the UK forum have found a herbal remedy called Agnus Castus helps loads - one lady had no probs after taking it and my glowing sessions are much much better. You get pills and alcoholic extracts - pills are convenient but the tincture is more "bioavailable" (you take 20 drops or so in water first thing in the morning).
There are a lot of us over there who are in our 50s (or were when it started).
I think some of the problems we have are because of the way the PMR affects how we stand and walk and that compounds the difficulties so physiotherapy can be very very helpful getting us to walk and do stairs properly - and they are really a problem!
Somewhere someone asked if anyone ever gets over it - the answer is YES, there are some people who do manage to get off steroids. It's not a cure though - the disease has gone into remission, died down enough to not cause a problem, and it can come back, often after more stress or illness.
And how anyone with PMR ever manages to hold down a proper job (i.e., you have to go out every morning to work) is beyond me - I'm freelance! You have my full admiration!
Eileen
Hi Eileen thanks for that tip will try to get hold of some as anything that will make me suffer one thing less will be very welcome. I do remember when i first posted on here some months ago i think you saying about some other things that should be taken i think one may have been viatmin d can you remind me please.
nanatjjj hope you had a great day with the grandsons. Dont know about you but sometimes my grandaughter is the only thing that keeps me going when i am feeling in the depths, i just need to see her happy little face and it gives me hope. lets hope we all have a good day tomorrow here in the uk the weather forecast actually says sunshine for tomorrow that will be a welcome break from all the rain we have had recently so lets hope for once they get it right.Part of PMR can also be tendonitis/synovitis and that was the most painful part for me pre-steroids. I couldn't walk up stairs either without awful thigh pain but that resolved very quickly once I was on steroids although even now too many stairs is a trial! The tendon and joint pain took much much longer to improve - several months at between 15 and 10mg/day.
One lady on the UK forums who had GCA originally developed severe muscle pain a few months ago and it was found she had very low blood levels of vit D. She was put on a shortterm course of very high dose vit D - it is quite expensive so at present can only be ordered by a consultant in the UK although the guidelines have been revised to give a much higher normal level than used to be the case - and the muscle pain improved whilst she was on it. It returned a bit after the course stopped, she was given more and the muscle pain is fine. Low vit D is one cause of muscle pain so checking the vit D level is important - extra vit D is better for you than extra steroids! Many doctors will tell you that you get all you need in diet (not true, very little vit D there except in the foods that are fortified and in Europe there are few, it's better in the US) and sun exposure. This also not true - if it were then 80% of the population of this area of northern Italy where I live most of the year wouldn't be vit D deficient, we get more than 300 days a year of sun! We have been told not to go out in the midday sun, to cover up and use sunscreen - all of which reduces the amount of vit D we make in our skin to levels that are not adequate to do us all year. We have our lowest stocks in the body in the spring. There is a difference between "normal" levels which is what is found in the general population and "optimal" levels which is the level the body works best at and as we get older our skin "factory" works less well so that at 70 we make less than a quarter of the rate that we did at 20. At 20 we also wear rather less in the way of clothes so there is more bare skin to do the job! If you live north of Turin the sun's rays also do not strike the skin at the right angle to make vit D for the vast majority of the year so that reduces it too.
My vit D was bordering on severe deficiency and I took 10000 IU a day for a couple of months (10 tabs/day of Holland and Barrett 25microgram tabs which you can get OTC) and got my blood level to a decent level - still could be better.
Where do you live lynseylou? Can't be in the south of England - they've had a fifth of their normal rain over the last 3 months! But if you are suffering, either the dose of steroid is not high enough FOR WHERE YOUR PMR IS AT PRESENT or there might be something else going on. Several of us on the UK forums have found reducing at 1mg at a time (in some cases 1/2mg) has allowed us to reduce the dose successfully. 2.5mg at a time seems to be too much as you approach the right dose to keep the PMR at bay without problems. It seems even the doctors are coming round to that idea too. The bigger reductions work at the higher doses (though not always) but there is often a sticking point around 10mg - 10mg is fine, 9mg is not - and at that point the reduction should never be more than 1mg at a time whatever any GP (or consultant) may try to tell you. Very slow and steady, edging down the slope, will achieve more than jumping from top to bottom where you may find you have to go back to the beginning to get the inflammation that has resurfaced under control. Once you start yo-yoing the dose it becomes increasingly difficult to reduce for some reason.
Eileen
Lynn - have you discussed antidepressants with your GP???? If you are also still working the whole PMR thing is a nightmare both from the point of pain and dealing with the whole scenario. I know I couldn't have gone out to work and keep to a timetable - especially as mornings are absolutely the worst time of day, getting out of bed is bad enough! By the time I had got out of bed and showered and dressed I need to rest for an hour before I could do anything else - work??? Yeah right!!!!!!
And I forgot to mention in the other reply that you HAVE to remember that you are not cured and now need to get off the steroids as you would with other illnesses - the steroids are keeping the fire of the inflammation under control to allow you to lead an almost normal life. You also have to make some accomodation for that - I do fine at 9mg/day until I do certain things and then I suffer for several days. I know about it but when faced with a necessity I do those things and the pain and stiffness is back and I'm miserable.
Eileen
Hi Eileen my dr did want to put me on antidepressants but really dont want to go down that road. I tried to explain to him that it was the pain that was causing the depression and he knows the pmr is not under control as my inflamation levels have gone up. The steroids have been dropped very quickly when i have dropped and from everything i have read should not have been (started on 15mg 2 weeks down to 10mg for 4 weeks then 7.5mg) Never really felt right at 15 i am going to see new rheumy on the 20th of june and dr has given me arcoxia in the mean time which is helping to control the pain but he wont do anything else until i see rheumy. I actually live in the north of england which is wet most of the time anyway although we did have a nice april but last couple of weeks nothing but rain
Hi MrsE,
You mentioned tendonitis/synovitis. I had a very bad day yesterday after the P.T. was too vigorous with the deep massage to that left hip on Tuesday. Could hardly walk yesterday! Today we talked about it and she used just the ultrasound and electric stimulation to try and calm the area down. She also thinks maybe I have a bursitis going on there too. I agree with her that it could be the case. I really like her, but with any therapy I know that there is a fine line between help and aggravation of a problem with me. She said she will need to be more careful, but was encouraged by my initial success and maybe pushed me a little too much. I told her I didnt think it was the basic core strengthening exercises she was having me do at home, but rather the deep tissue massage. My body just cannot take that.
Thanks for all the information you posted. Have you been away? I have been answering Lynsey, but know I am not the expert. Just tried to respond with some of the things I have learned from you and the links you have sent me. Nan- gently does it - shame the physio was a bit enthusiastic but sounds as if she's learnt by her mistake. Do hope so.
Yes - been toasting my toes on Lake Garda! We have a trailer van stored down there and it takes just 3 hours to get there, choose a pitch and pick it up and get set up! We had a super-duper thunderstorm last Friday - 4in rain in an hour plus horizontal hail! By next day you wouldn't have known - and no serious damage done. But the clear up was hard work - been sore ever since! We have wifi internet access there but I had the netbook which is such a pain to type on so I don't bother too much.
You seem to have learnt well from me
Eileen
Hi all just reading comments again no real pain in muscles at the moment but limping really bad any ideas feeling not that bad still not got a lot of energy but i know thats be expected but is this something else
Nanatjjj, I hope your PT now realizes she has to take it easy on you. Too enthusiastic or vigorous massage can damage rather than help. I learned that by experience !
lynseylou, you are so right, the pain is what causes the depression. I don't think I've ever been so depressed as when I was going through a flare and thought I had to stick with the tapering program. Constant pain is torture! I'd rather do something about the pain than take an antidepressant and add a new set of chemicals to the mix that is already in my body.
What I wrote sounds so cheerless....I hope not!!! I hope everyone is feeling better today!
freesia
P.S. editing this to say, I realize now that I wrote the above while I had a bad night's sleep the night before! No wonder it felt to me as if I were "cheerless" ! Today I feel like a different person,mentally and physically, having had a fairly good night's sleep. Just reminds me once again, how crucial sleep is with this disease PMR!
freesia2011-06-12 11:03:38Hi all,
Thought I'd jump in here with you. Reading this thread was like reading about what I've been feeling. Mrs. E is so right about taking it slowly with the tapering. I tend to yo yo, but have been trying the slow but sure method. Still at 13 mg. My last day of teaching for the year was Thursday, so I'm now a lady of leisure. I've just begun reducing by 1/2 mg. on alternate days. Even at 1/2 mg., I am hurting more.
The fatigue has been pretty bad lately. With PMR I need so much sleep, at least 9+ hours, but I also wake up a lot in the night. Here in northwest Montana, it's daylight from 5:00 a.m until 10;30 p.m this time of year, which makes it more difficult to sleep.
Today I'm feeling pretty rough. I guess it's not enough sleep and the reduction. It seems crazy that 1/2 mg. could make such a difference!
I also have the hot flashes. They come out of nowhere, so quickly! And the moon face....I was at the pharmacy a couple of days ago and someone I hadn't seen in awhile asked if I'd been to the dentist. I said no, this is a prednisone face. I hate it, and I do notice people looking at me oddly. It's embarrassing.
I understand the concern about antidepressants, but I think it's wise to consider them. I'm taking Celexa. I was soooooo down. This disease is so hard to cope with, that I feel that the antidepressant has eased the emotional burden some. Also, I think they've helped me to continue working. I do only work part time. My rheumy wrote a letter to my school employer and they were wonderful about it. It is true though, we don't look sick, so most people have a hard time understanding what we're going through.
One last thing. I go to a massage therapist once a month. She is very gentle and I feel a lot of relief during and afterwards. Wish I could afford to go more often!
I'm beginning my 3rd year with PMR. Sometimes I feel like it will never go away. I try to look at all the beauty around me, and all that I have to be thankful for...
Sending you all gentle hugs. I don't know what I'd do without this forum.
JannieHi Jannie, I cannot believe that I am more stiff in the a.m. when I tried reducing by only 1/2 mg too from 19 to 18 1/2! Today was the 3rd day on 18 1/2 and I am really fatigued! Jeezzz!!! I need to remember to look at the beauty around me too. I have only been dealing with this 5 1/2 months. I know what you mean about the moon face too. I feel like a chipmonk hidding their nuts in their cheeks! I am getting used to seeing myself in the mirror. I try to warn people I am going to visit so that I can avoid their reaction. Guess that wont work when we run into someone unexpectedly. I am surprised though that someone asked if you had been to the dentists. Seems a little rude to ask that. I wonder about going back to my massage therapist. Maybe after I finish with the P.T.
Hope you are all doing well today!
Just wanted you to know you have company.... I've officially joined the chipmunk cheek club. A few days ago I ran into a friend I hadn't seen in 3 years and she said "I'm glad you yelled out at me, because I would have walked right by you--I wouldn't have recognized you--your face filled out". However, it's not all negative. The first thing she said was "you look good" . So maybe there is something good about having chipmunk cheeks. I had to explain about the prednisone.....
freesia, I cant think of anything good about having chipmunk cheeks!!! But I laughed out loud reading your post. What a club we belong to! It's a club we want out of not in to !! Oh well, good thing I am 64 and life looks different to me. I say or think a lot of "Oh well's".
But really, "your face filled out". Cant people keep those comments to themselves? We all change, so saying you might not have recognized someone is bad enough without being so specific. I'm getting a little tired of having to explain the Prednisone too. Hmm, so where did my positive thoughts go today??? I did a lot of errands this morning, then must have overdone it because I had to take a 1/2 of Tramadol at 5 p.m. and I never have to do that. I just was so uncomfortable that I was getting really irritable. It helped take off the edge. (I usually only take the Tramadol at bedtime).
Chipmunk Club closed for the night!
Hi Nanatjjj,
Oh, I know what you mean about people keeping those comments to themselves, but I just wanted to say, this friend wasn't being catty or mean--really. Some people, yes, it would come across as being mean-spirited or hurtful. Still--I don't recognize myself most of the time, so it's not fun being reminded how different I look.
The Chipmunk Cheeks Club is definitely not one I want to belong to! LOL...but at least the company is good!
I hate it when the pain makes me feel like I am looking at people "mean" or I'm grouchy, when it's the pain causing it. I try to explain to people so they won't think I'm staring daggers at them!
freesia
freesia2011-06-18 11:12:12Hi all,
One of the reasons that I hesitated at increasing from 9 mg. to 14 mg. was because my cheeks were finally starting to go down a bit. My rheumy said I was actually starting to get cheekbones again! But the pain wasn't worth it, so now my chipmunk cheeks are bigger than ever. Sigh...I know what you mean about not recognizing yourself. If I glance in a mirror or store window, I'm shocked. I know this probably sounds vain, but sometimes I avoid public places, because I don't want to see anyone, or rather have them see me. I hope you understand. I know it sounds pretty dumb.
One thing the prednisone doesn't help is the fatigue. I cleaned house and did laundry today, gave the dogs a bath and put a stew on. We're having company. Maybe I'm just tired this afternoon. Sorry to be so glum...
I'm so thankful for everyone here,
JannieHi Jannie, I am glad to see that your cheeks were going down at 9 mg. Great. But I know what you mean about the pain. There is only so much we can tolerate every day. Maybe you can look at it as just storing a few more nuts temporarily for the winter! I dont like looking in the mirror either and I understand avoiding public places. No where to hide it when its on your face!!
Sorry to hear about the fatigue too. I am better adjusted to that then I was a couple of months ago. I still have it, and worse some days than others. I think getting physical therapy is helping me some since i am getting a little stronger overall.
Hmm, but if you cleaned the house, did the laundry, gave the dog a bath, and put on a stew, who wouldnt be tired, PMR or not!!!! Yikes, it sounds like you had a lot of energy and just used it up. Maybe need to pace yourself better. I pay for it if I do not pace myself.
Hope Sunday is better for you and you enjoy your company.
Hi Jannie,
I know what you mean about seeing your reflection in a store window or whatever, and wondering "is that me?" That was similar to how I got my first real shock...I saw my reflection in the stainless steel wall of an elevator! "Is that what I look like?"
Hi freesia, I am like you in that if I have any energy I try to get some things done, esp in the morning hours. I may pay for it later in the day, but I have to get some things done and I cant just sit around all day. That just makes me feel blue. I think we get the fatigue from the PMR and the Prednisone. At least now my fatigue is not extreme every day, just some days. Most days I have my usual fatigue, but I get by.Then there are days when I feel exhausted quickly. Those I call the extreme fatigue days.
Hi freesia,
Wow, I am impressed.
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