Hope I can explain myself!

Bones, joints and muscles
1

Have had PMR 5 yeras now, with Fibro as well....I have  (or had) a rheumie that dosen`t listen, so doctor works with me (mostly)  I have been in so much pain recently, but doctor still wants me to drop pred dose (was 11mg) agreeing for once with rheumie that I mostly have fibro pain!....I have dropped on the very slow method to 10mg over many weeks....but I am in intolerable pain...legs/Lower back/hips/groin/shoulders.....I am struggling evan to sit down . I have been last two weeks to physio, had very gentle massage/acupunture, only result beeing I actually got a few hours sleep!

​My question is.....I know I have to up the dose again (much to horror of doc and rheumie)  but how come if I up to say 12mg the pain eases, or higher, and then drop quicker to 10mg again it halts the pain, but can start lowering......why dosen`t it ease the pain on the slow method??

​Eileen for example, has said she had to up her dose several months ago.....it eased her symptoms, and she was able to drop to lower dose quick again....but why is that....I just don`t understand....what am I missing here.....

​I know I have two things going on, but it certainly is more PMR pain.....everyone seems hell bent on getting me off pred......I wish!  would be happy just to be at 5mg and stay there!

Sorry for this muddled posting.....hope someone has some answers, before I go to the doctor.....in a few weeks...or before if I can`t bear it any longer!

​Thank you....

 

2

Hi Linda, I certainly feel your frustration. You are not missing anything. You are listening to your body and trying desperately to get the Dr's to listen to you. Unfortunately they are not. Advocating for yourself is hard. Stay the path of your belief, it is your body. Sometimes we do have to stay on the higher dose longer, sometimes years. Sometimes going up and down on a dose helps. This is individualizing how our bodies respond. Even different things one might do in a day can affect how our body reacts. I started tracking my activity by journalling daily. Maybe that might also help you. Good luck.

3

I would suggest that any of your pain that improves at a higher dose is PMR pain - what's left is fibro. Fibro DOES NOT RESPOND TO PRED - don't care what any doctor tries to tell anyone!

I don't quite understand your question really but I'll try to answer as best I can. I had a flare and took 15mg to cover the symptoms in February - that was what my GP told me to take and she is rheumy trained, I was intending to try with 10mg first of all. One of my problems was breathlessness - I don't think it was PMR as such, I think there was some vasculitis going on in my chest arteries causing the lack of puff but it was something I'd never had before. I tried to reduce a few times, got to 12mg and the breathlessness was back after a few days, I was checked for a load of other possible causes - but eventually was able to get down to 10mg, can't get lower yet though without a return of PMR-type pain. My husband had also had a chest problem about the same time - nothing new for him but could it have been a infection that caused my chest problems too?

The pred doesn't cure anything in PMR, it just relieves the inflammation that is being caused by the underlying autoimmune disorder that causes the symptoms we call PMR. No inflammation equals fewer symptoms. You take a dose of pred to start that is enough to relieve the symptoms - they used to use a higher dose then decided you got a good enough response from 15mg and that would mean you had a lower total dose of pred over the illness and that was a good thing. Now they have decided that maybe a slightly higher starting dose may achieve a better long-term result. Whatever - the starting dose is almost always well above the amount you would need day-to-day to manage the new lot of inflammatory substances that are shed every morning and then cause more inflammation.

So you start with a higher dose until all the existing symptoms have improved as much as they are going to and then you reduce the daily dose in small steps to find the lowest dose that manages your symptoms as well as that initial dose did. When you go below that dose your symptoms will reappear if the autoimmune disorder is still active and you still need pred to manage the inflammation. At that point you stop reducing and go back to the last dose that managed the symptoms and that is your longer term maintenance dose if you like. However - you still need to try a small reduction every couple of months or so to see if in the meantime the activity of the autoimmune disorder has got less and you could now manage with a lower dose. If it hasn't the pain will return. You do this in the smallest steps you can to identify that right dose more accurately and to avoid the shock to the system that reducing the dose of pred can be. I would suggest that you have found that point with 12mg, It doesn't make any difference how slowly you reduce - if you go below that "right dose" symptoms will come back.

There is an added complication that a lot of doctors appear to be totally unaware of: you don't absorb all of the pred you take. It varies from 50% to 90% and that is called the bioavailability. If someone only absorbs half of what they take then obviously it isn't going to have as big an effect as if they absorbed 90% - but without investigating you can't know how much this particular patient is absorbing. That means that there is no fixed "right" dose and that is why you have to "titrate" the dose to find YOUR right dose. It's exactly the same with warfarin - I needed 4mg but my husband only needs 2mg to keep his blood clotting measure stable where it is meant to be. We are all different.

Does that answer what you are asking - or did I misunderstand? I think you need a better rheumy - where are you? And you have to explain to your gP and get through to him that the pains are different and what is returning and which goes away at a slightly higher dose is PMR-related not fibro.

Just one other though - you say you have had physio, are you still going? Ask the physiotherapist what sort of state your back muscles are in, Are they soft as they should be or are they hard and in spasm? That is what happens to me, it isn't directly PMR. it is myofascial pain syndrome, it responds to some extent at higher pred doses and improves but comes back with a wallop when i get below 10mg. It definitely responds better to targeted treatment and then I can manage on a much lower oral dose. I'm about to investigate that - unfortunately the doctor at the pain clinic I saw last time is now a GP and only does the pain stuff privately which means if I see her I'll have to pay sad  But like you, at the moment I'm stuck.

4

Thank you so much Eileen for taking the time and trouble to reply......I think you have got the "gist" of my question......

​I know myself that Fibro dosen`t respond to steroids, and I also know which pain is which, I just wish the medics did!

​I have posted before about my "won`t let me ask questions" rheumie.....I am in Norfolk, my doctor usually works quite well with me, which surprised me when she said, for once I agree with rheumie that it`s more than likely fibro!.....well, feeling how I am, I know it`s not!

​I emailed the physio before I went to her, to explain my situation, and made sure she was aware of myofascial pain.....when she massaged me, she said parts of my back were tight, I have to sit bolt upright, and on a very flat seat, if my pelvis tilts, I`m in big trouble.....physio tried to get me to do just one or two very gentle pelvic tilts (like Pilates core exercise)....but I really paid the price from the next day.....and for several days onward....( I`m paying privately, feel desperate for some relief) can only tolerate 1 paracetamol a day.....

I don`t get breathless as such, but get a weird breathless second or two like everything stops....hard to explain, but think maybe it`s the pred....

​I started on 15mg....5 years ago.....have been up and down, but at 12mg was able to cope....even though I had some stiffness/pain, but could leave the house!.....getting to 10mg....terrible, (even doing it very slowly!) have been at this 2 weeks now, and don`t think things are going to improve.....too much pain to wait......

​Will go back to 12mg and see how things are.....

I know people don`t understand....I`m know some members of my family think I`m pathetic for not being able to come off steroids.....too which I answer.....there is nothing else.....to which they answer......Painkillers!

Can`t print what I like to say to them

​I hope you don`t remain stuck for too long....keep us posted.....and big thank you again.....I am going to print your answer, so when the ignorant ones amongst here give me stupid suggestions they can read it!!

 

5

Eileen, my experience is that shortness of breath is part of my PMR and that it definitely is alleviated by medrol. My current rheumatologist says that there is clinical evidence of this, but that it is not usual and there is not yet an explanation for it.

6

Thanks for that, I might give it a try.....anything to ease the struggle.... thank goodness for this forum!......good luck yourself....

7

Linda, ask your physio if she knows anything about dry needling, and if she does would she consider giving you a few treatments to relax the tightness in your bakc muscles.  My physiotherpist said my back muscles were like bricks.  Dry needling works, apparently, to reset the electrical signals in a muscle so that it ceases to spasm.  In turn this relieves pain spasmed muscles can cause - often far from the site of the guilty muscle!

8

Philoso - It definitely wasn't in the PMR originally. This was most peculiar, it happened from one day to the next when I couldnt walk up the slope into the village. It was a week or so before the tell-tale PMR signs appeared. I did have signs that there was inflammation in my chest arteries originally but was never breathless. It would be a perfectly reasonable effect if the pulmonary artery/arterioles were affected at all - but they don't do the right sort of imaging to show that very often.

9

Linda - describe your breathlessness a bit more for me?

The physio needs to sort the hard back muscles FIRST - then she can do the other stuff. Anhaga has put up another post today that was me to a T - what she had was the same as I did and it worked. I also use Bowen therapy which helped a lot in the pre-pred days.

I'm going to be really annoyed now - I'm sure someone told me about a good rheumy at the N&N...

10

My shortness of breath showed up very early in the manifestation of definite PMR symptoms. It also was completely relieved (as was the PMR pain) with the first medrol pack. 

Clearly, all PMR victims don't have exactly the same problems.

11

During the spring and summer of this year I went through a phase of sort of "cutting out" quite frequently, like a radio signal fading in and out.  I also noticed that I seemed to skip heartbeats quite often.  My doctor was not very interested in this and suggested I needed to drink more water.  As I was already sloshing around it occurred to me that maybe the problem wasn't the amount of water but perhaps I wasn't retaining enough fluid.  So I very slightly increased my salt intake and over a couple of weeks noticed a definite reduction in both symptoms.  I still occasionally get the caged bird flutter in my chest but the light-headedness has all but disappeared.  

12

Which is one of the confusers...

13

Hi Linda, Have read all the excellent advice below and have had a few OMG moments as stuff has related to me.

One of the things that gave me great relief was heat. Often a hot pack helped and best of all when I was at my worse I would get into a hot bath. I imagine a spa would also help and on a couple of occassions I have used my daughters spa for relief when pain was bad. This was all pre diagnosis !

 

14

But beware of getting in a warm bath if you are alone in the house! And don't lock the door. There are several of us on the forums who have had embarrassing incidents either getting stuck in a rapidly cooling bath or being unable to get out without heroics due to PMR!

15

I can more or less say it`s the same as Anhaga desribes.....cutting out is a fairly good description I`d say.....like for a second or two, not even doing any thing strenuous....I have to catch my breath, and feel for a second or two that I`m not there, (lightheadedness like Anhaga said) if that makes sense....I have to purposely settle my breathing.....a friend who has panic attacks says it`s something like how she feels before it happens.....but I`ve never had those, and I definitely get them more frequent when I up my dose of pred....hope this makes some sense........

​Would love to know of a good rheumie at the N&N......if  the name  comes to mind, please PM me!!

Thank you again.....

16

Have got a heat pad.....wonderful I agree......

​Had a shower cubicle put in a few years ago, could not get in and out of bath.....stand in the morning with very hot water in shower, which helps me to get moving a bit.....all these little things help!....Keep well

17

Will do that, thanks for the advice.....don`t care what anyone does to me, if it brings relief!.......

18

Have you ever had a 24-hour ECG or BP monitor done to check your heart is beating regularly and your BP OK? These lightheaded spells can be due to irregular heart beat or variations in BP - I have had that problem. Some was due to atrial fibrillation probably caused by the underlying cause of PMR but more recently it was due to a wildly swinging BP - it would drop suddenly for no apparent reason. It is always good to rule things out. Mind you - all the checks in the world are only any use if they are being done at the time one of these episodes happens!

19

Actually I do have a BP monitor myself ( a xmas present!) so will try to take my BP at the time if I can....when I do take it (about once a month) last one 145/79....pulse 92......  my doctor did say BP can be raised with pred....(do you agree?)  I will mention it again to my doctor next time I go in a couple of weeks....

​Perhaps I should carry the monitor around with me!

​Did you find the cause of why the BP suddenly drops?

20

The only thing we could identify was that I was on slightly too high a dose of medication for BP and atrial fibrillation. So we tweaked it a bit. But generally the problem had been in response to sudden changes in temperature and/or hot flushes.It hasn't been so much of a problem over the summer - winter again now, cold outside meaning winter coats and shops will be overheated. It will be interesting to see if that makes a difference. 

BP can be raised with pred - so your GP should be checking it regularly to see. It doesn't matter WHY BP is raised - if it is raised enough it needs to be managed somehow.