Hi everyone.
So glad to be back online after 7 weeks..but feels like a lifetime away! Flare seems under control and pred down from a high of 25mg to 16mg (first week at lower dose). However, still in some discomfort over shoulders and down arms but bearable. Have good days and bad depending on weather. Very cold and damp here in Oxfordshire at present! Probably goes for much of Britain lol.
Currently reducing 1mg per week although new gp wanted 2mg reduction and to be at 12mg by now. I said that the pain needs to settle before any further reduction should be attempted. Hence the compromise. I still feel that this is going too fast and I need time for pain to settle before reducing further. Am I being reasonable or just a wooss? By the way I have only just printed off the link to the Bristol programme for pmr, but have yet to show him suggested reduction plan advised due to internet problems. I am not due to see gp again until Mch 9th.
Hello Kay, welcome back. No I don think you are being a wooss at all. You say that you are currently feeling some discomfort, maybe you should even up your current dose and as you say only reduce when all the pain and discomfort has settled under the current dose. I also agree with your instinct in that your Dr wants you to reduce to quickly and by too big a reduction. I would want to stay on each dose for a minimum of 4 weeks so that as you say, the current dose can really get to work on the current level of inflamation.You don't want another flare and it's obvious to me that you know more about how to avoid them than your new gp dies. Slowly and by little. All the best christina
Many thanks for your quick reply Christina. I was in so much pain when the flare took hold, such that I couldn't even dress properly and really affected my quality of life. It is not so bad now, although I still have a slight problem lifting my right shoulder. GP has referred me to physio but 1st appt not until 24th Mch. In the meantime I have joined a local gym which offers pilates classes and has a pool with spa area (the jacuzzi is bliss!). I am back down to the beginners class but that's fine as I don't wish to overdo things. A session - be it gentle swim or pilates - knocks me out for the rest of the day but am beginning to sleep better for it!
Kay
Kay, I got down to 9mgs last October and then I attempted to reduce to 8mgs and all hell let loose. A flare up! After 2 weeks I upped my dose back up to 9 mgs and all seemed ok. I saw the rheumatologist and after reading the forums go slow and almost stop regime asked my rheumatologist if I could reduce by a half of 1 instead of 1mgs. He agreed so I went home and the following day attempted my new reduction 9mgs one day followed by 8 mgs the next and so on and so forth. But I was very very silly. I had only been on the upped dose of 9 mgs for 2 weeks before I attempted the new reduction and guess what I only experienced flare number 2. After about a week I simply upped my dose to 10 mgs so that the prednisone could really take charge. I stayed on that dose for 6 weeks and then I reduced my dose to 9.5. I've been on that dose for 3 weeks now and will stay on it for a further week then reduce to 9. I'm going to reduce by .5 all the time and if I can get away with it reduce by the current dose one day followed by the new .5 dose the next day. Now that really is slow! I'll stay on each new dose for at least 4-6 weeks. I definately do not want another flare.
i went and played tennis on Friday for the first time since PMR symptoms, (sep2013).i could barely run and I had no power and I couldn't serve but I just loved it. I suffered for the following 2 days but I took things very easy and I'm sort of feeling back to my normal PMR self! I also am doing plenty of walking and exercise at home and as you say I do feel very old doing all these exercises on half power (I'm only 53) but I realise this whole recovery process will not happen over night and any little exercise is better than no exercise. All the best, christina
hi kay i reducing quater at a time and also wait til reduction pain settles
im on 1.5 1,2 alternate i do still have a little pain and scared of a flare, but so far so good/ so keep it slow and do what your body is telling you good luck
I'm a newbie here since you've been away (GCA only), but the thing i'm learning about this tapering thing is that I'm in control, not my doc. I'm tapering this weekend from 70mg to 65mg and it has been pretty good. my doc's suggestion was to jump to 60 but I said "no way" and gave her my schedule that I wanted to do. I figure i have to go thru the pain. you should do what's comfy for you.
Hi Kay!
How long were you off prednisone before your flare up or were you ever off prednisone completely? The reason I ask is that I have been off prednisone approx. 6 months now, with minor aches and pains that mimiced the main bout. My doctor thought i was cured because my sedimentary levels were within the "normal range|. I told her (when she asked me how I felt) that I had minor pain similar to when it first started two years ago. Her response was "well, your blood levels are normal". So, I felt that I was, to use your word, " a woose" and soldered on. Having found this wonderful site and learned so much over the past week or so, I now know that I have had a relapse and must go back to my doctor for more treatment i.e. prednisone. I was originally on prednisone for 2 years but obviously that was not enough time in my case. I naively thought that a person could be cured of PM never realizing that it only goes into remission. Getting back to my original question, how much time passed before you relapsed?
Hi Kay!
How long were you off prednisone before your flare up or were you ever off prednisone completely? The reason I ask is that I have been off prednisone approx. 6 months now, with minor aches and pains that mimiced the main bout. My doctor thought i was cured because my sedimentary levels were within the "normal range|. I told her (when she asked me how I felt) that I had minor pain similar to when it first started two years ago. Her response was "well, your blood levels are normal". So, I felt that I was, to use your word, " a woose" and soldered on. Having found this wonderful site and learned so much over the past week or so, I now know that I have had a relapse and must go back to my doctor for more treatment i.e. prednisone. I was originally on prednisone for 2 years but obviously that was not enough time in my case. I naively thought that a person could be cured of PM never realizing that it only goes into remission if you are lucky. Getting back to my original question, how much time passed before you relapsed?
1mg a week is far too fast - it isn't allowing your body to adjust nor does it allow you to see if you have reached the lowest dose that manages the pain and stiffness AT THE MOMENT. You need at least 3 weeks at each dose. So no, you are being neither unreasonable nor a wooss. Cold and damp do not do PMR any good at all and slow and steady is the watchword in the winter - it could be different come the spring!
The shoulder discomfort is most likely bursitis and that takes a lot longer to settle down than the muscle pain and stiffness - again, slowly, slowly.When you get to 15mg I would ask very politely but firmly to be allowed to reduce in 1mg steps but much more slowly. Have you had ESR/CRP measured? Were they high originally? Have they been checked since? If so, have they fallen (if they were high) and have they stopped falling? That should be the aim before progressing with the reduction. I suppose at least you were started high and haven't quite got to most people's starting dose yet.
Good luck
Hi Kay i am new to this group and ondered what you did to help yourPMR when you moved as we are moving in about 7 weeks time o a bungalow.The last time i moved i nearly split up with my husband because i did too much and got really niggly and moaning, followed by a big flare up straight after. i tried to pace myself but things have to be done as and when on moving day.so any tips will be useful. i am actually diagnosed with fibromyalgia but prednisolone takes the pain away, i am having blood tests tommorow to check my imflamation levels perhaps i have PMR it seems to be very similar.
Having done a couple of moves with PMR the best advice I can offer is get the removals firm to do as much as possible and someone else to do the rest. Make sure your bed is erected and ready to sleep in and that you have a basket with tea pot, kettle, tea bags sugar and milk (or whatever your poison is) and mugs handy in the car so it doesn't get lost. And a box with plates, cutlery and other basics in the boot. If possible, book a couple of nights at a B&B/hotel/motel for the first couple of nights. And don't panic about unpacking everything asap - if it takes a few weeks, so be it. It won't rot in the meantime. Label every box so you can see where things are. Breakfast and lunch are relatively easy - get ready meals or eat out for dinner.
It's all cheaper than a divorce.
Liz, I understand patients can have PMR and fibromyalgia at the same time. You mentioned blood tests and inflamation which sounds very PMR ish. Fibromyalgia does not involve inflamation and cannot be diagnosed by inflamation levels, and therefore does not respond to prednisone. So any response to your pain with prednisolone will be PMR pain. Please correct me anyone if I'm wrong. All the best with your move. Christina
Hi Kay, Im quite new to PMR only being diagnosed in Nov. i reduced by 3mg and my inflammation levels were up so it obviously was too much im waiting for my next blood test to see where i go next, i wish i had joined this forum before i reduced it by 3mg and i certainly wont be doing it again although phsically i am fine except for the dull ache behind my knees. I too live in Oxfordshire(drayton) maybe we could start a group
Hello Liz, normal reduction is 15mgs for 6 weeks, 12.5 for 6 weeks followed by 10 mgs for anything up yo a year. However, their are some who find the reductions too large and therefore from the first dose of 15mgs reduce only 1mgs every 6 weeks and then at 10 mgs stay on that dose for anything up to a year. If the 3 mg reduction was too much what dose are you currently on? And it's good yo know that someone else experienced a dull ache behind their knees to. Christina
Thanks Christina - I knew there was something else I meant to say!
Fibromyalgia doesn't respond to pred, PMR does. And Christina is absolutely right, if you are really unlucky you can have both. One at a time is bad enough - having both is just greedy!!!!
Ive been on 12mg for about 6weeks( i didnt realize the importance of maybe keepin a record, i am due blood test this thurs if no change do i go up or stay the same its a dilema
hi kay i have been on 10mg for3 weeks and dropped to 5mg this week, gained some relief when on 10mg,but dr wants to get me off asap but slowly
Kay, may I ask how long you have been diagnosed with PMR and on medication. I ask because from 10 to 5 mgs is a huge leap, and surely not suggested by your Dr? You should be on 15 mgs for 6 weeks, 12.5 for 6 weeks, then on 10mfs fir anything up to a year, then it's a small reduction, slow taper from then on. Christina
Liz, I presume you started on 15 and went down to 12mgs. The most important thing about reducing is that you should never reduce more than what is needed to control the inflamation. The inflamation is there all the time bubbling away and the prednisolone stops it from flaring any higher. The condition hopefully will burn itself out and as the condition burns itself out that's when we are able to reduce the medication to then match the new lower level of inflamation.
if the prednisolone is doing its job and controlling the inflamation then your next blood test will come back normal. The blood results will only come back high(er) if the medication is not controlling the current level of inflamation. If your results come back normal and you feel really well and there's no PMR pain then you can try and reduce to the next level, but if the results reveal some inflamation then you don't reduce. You wait abit longer for the inflamation to burn out abit more then attempt the next reduction dose.
There are patients who find that the 15-12.5-10 mgs are too big a leaps and will reduce only 1mgs at the higher doses and stay on each of those doses for 4-6 weeks, then at the lower doses, under 10 then adopt the .5 reduction and reduce slowly.
You say that you still experience some pain behind your knees, you may well be better getting that pain under control before reducing further anyway. See what your gp says when you see them but I would probably up my dose just by 1mg and see if that brings the pain behind your knees under control. What is important is just because your Dr says they want you to reduce, you should only reduce when the current level of inflamation is under control. In other words the dose should be enough to control the inflamation because the inflamation cannot be reduced to fit the dose of medication, no matter what the drs say. Christina
Hi I am on 19 mg was on 40mg have been coming down 1mg every 2 weeks which has been fine butbi have been getting symptoms back over the last 10 days due to go down again by 1 mg on sun bur don't think I should go down until things settle also is it safe to take co-codymol while taking pres
Mo