Can I raise dose temporarily on holiday?

Posted , 5 users are following.

Greetings from Sardinia where I'm on holiday. Before I left I went back up to 5mg from 4mg which I'd been on for a week or two, as I was not feeling good and my CRP levels had gone up to 14 (which is high for me). My consultant was determined to get me off steroids because she now thinks I don't have PMR (on the somewhat dubious basis that my CRP levels had gone down while I was on 5 and my main symptoms are now a swollen knee, frozen shoulder and pain in lower back and upper arms)

Having stirred the inflammation up again I am not sure 5mg is now enough and as I'm on a boat I'm finding it quite difficult getting out of a bunk bed and generally not feeling as energetic as I'd like on holiday.

I know Eileen takes her steroids on alternate days and I wondered if I could do that while here - ie take 10mg every other day so at least I'd feel good on the first day...

Ideally I'd like to try and keep to 5mg as it worked for me before and I can certainly cope on that when home. 

The consultant wants me on 3 mg by my next appointment in July/August (ain't going to happen!) so that she an do more tests to see what's going on.

0 likes, 13 replies

13 Replies

  • Posted

    Hi Dinah

    I have only had PMR for 4 weeks now but as other members have said on this forum we are the ones who are suffering the pain and know exactly what our bodies are feeling, whereas the doctors have probably never had PMR. I personally would up my dose to whatever I felt was best for me (within reason) and that made life more comfortable and less painful. Others may disagree. Good luck and enjoy your hols.

  • Posted

    Not an expert on this, Dinah, but my guess is however you raise your dose, you'll have to come down slowly again.

    Alternating a higher dose so as to have one good day...? I don't know what to say, but i can't imagine it would be much different from taking 5mg a day as far as prednisolone quantity is concerned.

    And how will you feel on the off day?

    If it's any help, my rheumy also once suggested if, while on holiday, I was having a hard time I could temporarily up the dose. This was for RA though, not PMR

  • Posted

    Dinah

    "The consultant wants me on 3 mg by my next appointment in July/August"

    You're quite right in saying "that aint going to happen"!  As tavidu has already said, only we know what our bodies are doing and feeling, and as far as PMR is concerned it's no good anyone wanting us either down or off steroids in X length of time because the illness has a mind of its own and will only go into remission when it is ready and not before.

    You are at a very common sticking point where the adrenal glands are trying to get up to speed with producing their pre-steroid amount of natural steroid (cortisol) after being suppressed by the long term steroids and until that happens you will have a shortfall in your body which can and does lead to increasing pain. It happened to me at 5mg but I continued to reduce by 1mg a month as instructed, only to find myself becoming almost bedbound again at 3mg.  My rheumy then increased me back to 10mg with a staged return back to 5mg where he kept me for many months.  I then proceeded with reductions at a snail's pace

    until successfully reaching zero Pred.

    If, as you say, 5mg isn't proving enough, then if I were you I would increase back to 7.5 at least.  If you feel better after a couple of days then you'll know that is the dose you need for now.  If you leave the inflammation to gradually build even higher then you will end up on an even higher dose to get it under control again.

    I don't think you will benefit by starting to take the dose on alternate days particularly at this lowish level.  Better to get the full dose in as early in the morning as possible.

    I know this might sound harsh as you are on holiday, but really don't go overboard with trying to be "energetic" as that won't help - you really need to rest as much as possible and allow the increased dose to get control of what sounds like increasing inflammation.  I hope increasing the dose helps so that you can enjoy Sardinia - one of my favourite holiday areas.

    • Posted

      Thank you Mrs O - excellent advice as usual. The only problem is if I am back up again to 7.5 when I next go to see the scary headmistress/consultant she will say they can't do any investigative scans to see what might be going on if it's not PMR because the steroids would be masking things. I haven't had any scans of my shoulders or hips despite having what I still believe is atypical PMR for nearly two years.
  • Posted

    I tried taking pred once every couple of days and in my case it was a disaster although I know others who find it fine. I am not sure I would try to experiment on holiday. You should up your dose to where you are comfortable.

    I listen to the consultant when he says you must cut down to such and such a dose by next month. Every time I know it is not a good idea but I still try and every time I have had some dreadful flareups the last one being last week with my CRP and ESR shooting up around 40%. I think I have now got to the point where I am going to say "ain't going to happen" too. I must have been mad going along with it this far.

  • Posted

    LO Dinah. MrsO has has said all that needs for you to do.up your dose for a few days to find your comfort level and stay there for a few weeks, plus dont over do tkings,enjoy your break.
  • Posted

    I find this so interesting as on my last visit to the rheumy it was announced the PMR has gone but you have becosme steroid dependant at 9mg.

    I have carefully worked my way down another 1mg but all the old symtoms are coming back . . . are they due to steroid dependancy or am I having a flair.

    My Doc is great and a quick blood test showed I was on the up, not much. only one point, but up. I've held at the eight level and supstituted with various pain killers as needed. But its two hours to get up and really face the world.

    I am going to stick where I am and have another test to see which way I'm heading then make a decision with the doctor. Trouble is I have an appointment with the rheumy very soon . . . . . . .

    If I had not had this forum to dip into over the last eighteen months dont know where I would be.

    Thanks

    • Posted

      I am not a expert but i would say your rheumy is talking Bull s**t. perhaps one of the girls with more knowlege will reply to you with sound advice.
    • Posted

      Davidmelville

      "PMR has gone but you have becosme steroid dependant at 9mg". [/b]

      No, not steroid dependent, more likely to be steroid withdrawal or a flare simply caused by reducing the steroids in too large amounts or over too short a period.!

      Generally the way to tell whether you are having a flare in inflammation or simply experiencing steroid withdrawal pain is that if pain starts re-appearing/worsening a week or two following a reduction in dose we generally consider that to be a flare, whereas if the pain returns almost immediately following a reduction, that can point to it being steroid withdrawal pain and it should start to ease up after a week or so.  

      I never took painkillers once on steroids, preferring to stick to just one medication and ensure I remained on the right dose long enough to control the inflammation.

      Have you tried one of the slower tapering methods, such as one whereby we reduce to the new dose on just one day, returning to the old dose for 6 days, then the new dose on one day, old dose for 5 days, new dose for one day, old dose for 4 days, etc?  If you haven't, definitely worth giving it a try - it seems to trick the body into not noticing the steroid withdrawal.

  • Posted

    I am totally sure that you are right. Eighteen months of living in my body and reading have taught me well.
  • Posted

    This discussion is so near to my heart!

    The role of the rheumy and the doctor is such a vital part in the curative  and quality of our PMR path. My doctor has been totally supportive, completely sympathetic and always encouraging. Whereas the consultants have been basically disinterested - and having seen a different one on each visit - there is no continuity of advise or path. X-ray shows I have a small amount of OA on one side of one vertibrae in the lower back and like wise on one knee joint. In itself no problem at the moment but to the rheumy of far, far more interest than the mysteries of Polymyalgia Rheumatica.

    So, the bottom line is, my doctor and me! The doctor has indicated that I don't need to see the consultant if I don't want to . . . Bit hesitant on that in case I do at some point really need a referral.

    i have to be honest that when I read of so many peoples suffering I feel a bit of sham! However as I sit here at eleven in the morning stiff and aching with shoulder girdle so sore and hip and knee girdle just aching I know I've got 'it'.

    So, how much would I have to up my dose to cover everything? My guess is another 5mg putting me up to 12.5 . . . But that will take another six months to ween off! So, hanging on at 8mg in the real hope that the pmr will balance out and then I can consider the next (very gentle) drop.

    PS. I have to say there is another side that on a good day you'll find me pursuing my hobby of bird photography, camera and long lens in obscure places, courtesy of a mobility scooter . . . it's my hips and knees that always let me down . . . they just give way (but not on high disses if steroids)

     

    • Posted

      I'll answer the lot here if noone minds since I'm on holiday! MrsO has said it all - really nothing to add.

      You don't NEED a rheumy if you have a good GP who understands PMR properly (not all rheumys know about PMR anyway as some of us know to our cost).

      If you are on a dose that is too low - the PMR will reappear. Being at too low a dose means you have all the downsides with none of the upside  - pain relief. Basically - never reduce when about to do something special - like going on holiday! 

      I no longer do alternate day dosing - I had a flare that was possibly/probably mild GCA and it isn't recommended in GA. I have however been able to reduce to 4mg (nearly) using my "dead slow and nearly stop" reducing technique! 

      If you feel you have a flare it is possible to have a week at "current dose plus 5" until the symptoms resolve and then go back to the last dose you were comfortable at quite quickly. But remember: the most common cause of a flare is reducing too fast (i.e. in too big steps) or too far. 

      As long as the underlying autoimmune disorder is active you will have symptoms if not on pred. The only way you can truly say the PMR has gone away and you don't need pred is when you can reduce to zero without problems - I would hope the blood tests are normal - the pred is keeping them there!

    • Posted

      Thank you, some nice little gems in there . . . . Much appreciated.

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