more info as requested

Hello again carolk

As you've only just increased the steroid dose back to 10mgs, then you will probably need to give it about a week to see if you feel any improvement. If not, then you may need to increase back up to 12.5 if that was the dose at which you felt the most comfortable, reducing after a couple of weeks by just 1mg to test the water, so to speak. But importantly it would be a good idea to have the blood tests (ESR and CRP) repeated to check that the they are heading back to normal. How lucky to have your GP on your side, at least I assume she will be as she is a friend of your's. Don't lose heart as flares are quite common in the first 18 months or so.

MrsO

Hello carol

Yes you do have to give it more than a day or two to feel the benefit As Mrs O has said flares are common so dont panic

I had a major one after 14 months and had to go from 4mg to 15mg to control it and since than ( nearly 2 years ) I have managed to get back to 4mg but it has been a rocky road and i have had minor flares I had to go from 2mg to 5mg earlier this year So Im afraid patience is needed

Do have your blood tests done I have mine done every 2 months now before my next reduction prog is discussed Until I got to 10mg ( from 20mg ) I had them monthly

best wishes

Mrs G

Mrs G

By the way, well done at getting down to 4 again - I know just how hard you've worked on this. With a bit of luck and a following wind you'll be ok now at least getting back to where you were - 2 I think? :D

MrsO(Shirley)

Hi Carol - I've posted a few times about this sort of thing recently! I don't think this is a flare in the sense of the disease getting worse - I think you have just reduced the pred slightly too far and that is what many doctors call a flare instead of accepting they are giving too low a dose (and that is the most common association, too enthusiastic reduction = return of symtpms).

Although the reduction has been perfectly acceptable according to most of the literature, something that has become quite apparent to me from the experiences reported on this forum and on the one linked to the pmr gca uk northeast support group is that even 2.5mg reductions are fraught with the risk of overshooting the lower \"maintenance\" dose that will control the symptoms over a longer period. 15mg will deal with the symptoms fairly quickly, the most recent report from a group in Italy is that 12.5mg will work in about 70% of patients within a few weeks and they suggest that using this as a starting dose will contribute considerably to the overall steroid dose.

It looks as if 12.5mg was doing the job well - but the reduction to 10mg has taken you down to the level just below what you need for where the activity of the underlying autoimmune disease is AT THE MOMENT. What I have seen is that patients apparently are doing well but they do see the markers creeping up very slowly - and to me this is an indication that the inflammation was not as well controlled as it could have been before the reduction and the slightly lower dose let it \"get away\".

If I were you, I would try 12.5mg again for a week if the 10mg doesn't bring an improvement in a few days - mainly because the 10mg didn't really seem to be holding it anyway judging by the figures. I'm sure I'm preaching to the choir - but just in case - I assume you do know that the pred isn't a cure here, this is symptomatic control? It's working on the inflammation caused by the underlying autoimmune disease that nothing much is known about. If the autoimmune bit is continuing at the same level then too little pred lets it cause the inflammation to bubble up again and the bucket fills up like with a dripping tap and then suddenly overflows.

As MrsO has suggested - once the symptoms are under control at a slightly higher dose try reducing at 1mg at a time the next time. And as she says - you are so lucky to have a doctor who will discuss this and treat you as the intelligent human being you are!

And as a reference: I have had PMR for about 7 or 8 years, 5 years undiagnosed and untreated. I have been on pred for nearly two and a half years and am currently on 8mg/day methylprednisolone which is equivalent in anti-inflammatory activity to 10mg of prednisolone. I've been lower and higher but this dose seems to work OK - and the rheumy here (I'm in northern Italy) seems to accept this as a perfectly reasonable longer term dose. You didn't say how old you are but I do get the impression that those of use who develop this in 50s/early 60s seem to have a more tortuous journey sometimes - maybe because we have higher expectations of how we want to feel.

Don't fall into the trap of desperation to \"get off steroids\". You know as well as I do what steroids CAN do in terms of side-effects - but here they are the only thing between you living a normal life and being stuck as an invalid. I've tried both ways (not through choice I assure you) and this way is a lot less painful and depressing. There is no joy in sitting at home alone because you can't get anywhere alone and crying into your cup of tea because of the constant pain of the bursitis that can be part of PMR if left to go on a long time. I know - I've been there. Using the steroids properly should prevent any need for painkillers that don't work anyway but also have nasty longterm side effects. They aren't all bad!

So I'll echo MrsO again: don't lose heart - this is a temporary blip and you will get

i realise now i should reply rather than post a new message each time please forgive i will get used to it !!!! you have helped me a great deal and it has helped to clarify my need not to see it as failure when i have problems with reducing i must not see it as a race to the finish line .i will leave it at 10mg for a few days and if it continues to be this painfull i will get the ok to go up to 12.5 i only have to phone in, most of the gps know me and the new ones look young enough to be my granchildren in saying that you are right i am 65 years old and i find it really odd been the patient ,i do have concerns re side affects because i have developed cataracts and dry eye ,i have eye drops that have helped with the dry eye and the opticians are keeping a watching brief on the cataracts .my gp gets my crp and pv done monthly and i have just had diabetes liver heart fbcs etc so i am well looked after .thank you again for all your info it has helped tremendously carol

Nothing to forgive - as long as you post somewhere we can answer you although it is easier if it stays within a thread so then we can look back and see what else you have told us more easily.

If it is really painful don't worry about going back up - as I said it really did look as if the 10mg was barely holding it anyway and just upping the dose by 1mg from 9 to 10 wouldn't really be enough to deal with the resurgence. People often make the mistake of edging up a bit when the pain returns - some GPs like to hit it hard by a much higher dose for a few days and then quickly back to the dose where you were comfortable. In your case that sounds like 12.5/10 alternating. Some GPs also feel that at a good status like that where the next drop is a problem (as has been the case here) a few months at that level is a good idea before trying another drop. I think it is a good idea to watch the markers (CRP, viscosity) over a period and see how long they keep dropping for to find your lowest level - and then try to keep them there. Some of us don't have that luxury - mine are obstinately low permanently however bad I am - but the \"normal\" ranges are only an indication and it would be helpful to know where each of us is normally. A GP might be happy with a patient having an ESR of 15 to 20 which is well within the normal range, but that particular patient may be best at an ESR of 8 and no more (I know ESR is a bit dodgy anyway but that is what most practices use).

I think that when patients on steroid develop cataracts it is merely a speeding up of something that was going to happen anyway and the dry eyes part could be the PMR - I had sore itchy dry eyes UNTIL I started on pred and then it all cleared up to my optician's amazement. Many of the side-effects you hear along with the wails about how awful steroids are not half as bad as they are painted. I don't go a bundle on being as cuddly as I am now and the chubby rosy cheeks REALLY get my goat - but the best way to deal with them is cover up the mirrors and don't have too many photos taken :wink: . The alternative doesn't bear thinking about. There are 80 documented side-effects of steroids (we've added a few more unofficially) and noone gets them all. Most of them happen at the really high doses and at the lower doses (10mg-ish and down) they get progressively fewer and milder.

It is a very interesting experience being on the other side of the desk/blanket isn't it? All sorts of things you used to sit and marvel at when a patient said or did something suddenly make sense. And you realise why they got so confused when it was SOOOOO obvious to you! What was your background? Have you done nursing training or what?

hope you feel better soon,

Eileen

i have been so impressed with your detailed reply i printed it out and stuck it up on my cupboard as a timely reminder that i am not failing to respond as the rheumy so delicately put it but just taking a little longer than the book says !!! i cant begin to tell you what a difference this has made its a sort of eureka moment and now i have a plan!!!

my gp is keen for me to manage my illness because of my background but with the back up of bloods and contact when ever i need it , this sounded good in theory because i am a great believer in getting on with life its so precious ,but i felt i was walking in treacle now i know why the bloods were rising despite no change in symptoms and now i know why they are sudenly getting worse i can up the steroids not feeling as if i am prolonging the process of been steroid free , that will happen sometime in the distant future .i shant worry about the chipmonk look i was overweight anyway and so far my weight has not changed much just my appearance ,.my career backgound is i am qualified srn with lots of different nursing experiances it theatre /burns / qualified district nuse /my last nursing post was clinical nurse specialist in pain and symptom control palliative care , advising gps families and patient supporting them in their own homes and following through in bereavement .i was on call 24hrs aday with a team of nurses and hospice/hospice consultant back up joint funded by nhs and charity donations.i became interested in children and bereavement and lectured on university and post grad courses it was very rewarding but i always seem to get the slot before lunch !!!!!now i look back and wonder how i packed it all in to the days with a family etc but retirement is a joy and my career in cancer care makes you value every minute even with the dreaded pmr .thank you again for taking the time to help me carol

I asked so I knew better how \"translated\" I needed to make info about medical papers :wink: You'll understand medical terminology when you read it - where you miss it will be when in a one-to-one with a doctor because we all do whatever our background! Even doctors do :shock: :lol: You must have told patients this but do you do it yourself? Take a notebook with your questions and write down replies or take someone with you. If you get an eejit consultant it's disgusting how much difference taking a man with you makes :roll: :x Several ladies on the forums have experienced THAT!

\"The patient failed the drug\" - how I hate that in the notes and especially when that wasn't the case. PMR isn't like other illnesses where pred is used but even the people who should be most aware of it appear not to accept it takes time and patience. We're all different. Deal with it docs!

And please can we all get a shottie of your GP? Wouldn't we all like one of them!!! :D

Eileen

carolK

I noticed you are located in Devon.

Please either visit the website - directions on the 'stickie' or email me on this website.

you are so right eileen i used to say take in a notebook but what did i do ,ignored my own advice ,however i intend to steer clear of consultants if i can and if i need to go my gp is going to refer to someone else !!!! my gp is a gem we have worked together for years so i am aware how lucky i am .thank you once again i went out today with a spring in my step metaphorically speaking !!!! carol

[quote:22f29b53c6][color=red:22f29b53c6][i:22f29b53c6]If you are happy enough it is PMR - work with your current lovely GP but proceed more warily with reductions[/i:22f29b53c6][/color:22f29b53c6][/quote:22f29b53c6]

I second that. I gave up on the rheumy dept. before I even saw the consultant. There's nothing to beat a doctor who knows you and with whom you feel comfortable and who will listen and not just lecture.

I'm currently aiming to get down to 3.5 ( I've had PMR for nearly four years and for three years twelve years ago so I have plenty of records to refer to ) and I had to chop the 1mg. pills into quarters last time when I got this low. I know that Eileen has remarked elsewhere on how much difference even a small increase or reduction can make.

There's lots of stuff on the other forum, too, and several of the same people. God luck

thank you betty e i am finding this support fantastic ,i will look on the websites but it is all new to me so expect blips now and again carol

hi eileen tried hard on 10mg but as you predicted no improvement in fact some pretty poor days but i am preparing for xmas visitors so more active ,decided to go with 12.5/10mg alt days ,started today so will let you know how it goes after a few days ,fingers crossed !!!!!not able to discuss with gp still on leave but she believes i know my body best and is happy for me to adjust as needed its me thats reluctant to go back up but now i have a different mind set i am keen to try and nip this inflamation in the bud, and i will not reduce until the bloods and i show improvement .thanks as always for all support carol

hi i said i would get back to you re increasing my steroids from 10 to 12.5/10 ,well the the first few days there was an improvement but yesterday i blew it was on my feet too long and by the evening i was paying the price with low hip pain . today is not good no shoulder pain but the hips ache and sometimes quite sharp pain but i am trying to be positive it did improve and i have only just upped them plus i have rested more today . i must share with you a letter i received today from my rheumy he wrote to my gp saying i had not attended an opd appointment for treatment of tendonosis of ankle this was quite untrue and i wrote to him and said i would never disrespect another professional by non attendance !!! he has sent a letter of apology blaming others naturally but this is not the first time he has not got his facts right, he informs me he will write to my gp to tell i did in fact attend which will give helen my gp a laugh .thanks as always for the support this forum gives carol ps if i do not write again before 25th happy christmas and a pain free family time .

hi good news i decided to go to 12.5mg od for last three weeks and have just had blood results back cpr gone from 14 to 6 and plasma vis gone from 1.78 to 1.67 and feeling much better less stiff moving easier still no physical get up and go but can get around providing i listen to my body when it needs to rest something i find hard to do !!!!! seeing my gp thursday would you reduce by 0.5mg or 1mg ?????? she likes me to be in control because its my body and my condition and i now know i am in it for the long haul and understand why thanks to eileen .thanks as always for support carol k