Fluctuating Prednisolone dose

Hi, I have been seeing my rheumy for over 2 years now and am down to 5 - 7 mg of Pred. We seem to be at loggerheads as to my use of Pred. I have a physical job and can now only work part time 2 - 3 days a week at most. To get through these work days I take a higher dose of Pred 7mg and on none work days I take 5mg. My Rheumy is not very happy with this regime that I have been using, but I find that I can cope much better than before while on the same 5mg dose everyday. All he seems interested in is getting me off Pred. He never wants to know about pain levels or any other symptoms. I am also on 15mg of Methotrexate.

Has any one used Pred like this or got any advice about what I am doing I feel that people on this web site have a much better understanding of this condition than my Rheumy and can give me better idea if I should go back to the old same dose regime the Rheumy wants or keep fluctuating my dose.

has any one else used Pred like this?  

Thanks horas

13 Replies

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  • Hi horas 

    I am no expert ... But plenty on here ARE and I am hoping you will get more replies.

    I was diagnosed with PMR early November 2015, started on 15mg PRED and currently down to 10mg at my own pace. 

    Luckily my GP has provided me with access to repeat prescriptions of 1mg, 2.5mg and 5mg Prednisolone and left me to decide how to taper.

    Reading advice on this forum on a daily basis, I realise it is WE who know how and when to taper the dose as WE have to live with this condition.

    Personally, I think you are being very wise and the system you have is working for you so ... Why change it ?  All the very best and hopefully you can persuade you rheumy that YOU know best !  It's YOUR body and you are managing your life very well x

  • I personally cannot see a problem with you fluctuating the dose like this if it is working for you.  I'm tapering using " dead slow" method and that calls for different doses, for example I am currently on 7mg to 6mg.   

    How will you taper from your current 7 & 5?   Maybe 6&5 for a while then 6&4.  Maybe that's what your Rhuemy is not happy with?  That you want to stay at 7&5 with no tapering plan?  

    I'm sure PMRPro will reply soon with her great wisdom and advice.  Good luck x

  • I agree that but it should be up to you.  My only query is whether each time you drop , presumably once if not twice a week, you aren't getting withdrawal symptoms.  I know I do, each time I have to adjust to a lower level. You dint say whether your work days are consecutive or not. 

    I wonder how alternating 7.5 and 5 would be, giving you a daily average of, er, um, somewhere in between!

    Good luck.

    Jora

  • you are so right!  People forget that there is a rebound pain effect when you slip down even a little.  My husband complains so badly after a couple of days after going down on a a couple mgs. I tell him to wait it out a day or two and then he levels out.   We can't seem to get a diagnosis of PMR. One minute he has it , the next nope!  We just found out he needs a cervical fusion. Now we really don't know what is causing all his symptoms and pain.

  • In my experience of a LOT of people with PMR, the ones who work need a higher dose than people who don't. It's perfectly logical - your muscles are intolerant of acute exercise as a result of the autoimmune disorder that causes the PMR (it is just the name for the symptoms) and if you do more, they get more sore before they recover.

    Your experience with your rheumy is fairly typical of doctors who don't stop to think about the practicalities of daily life and what the patient has to cope with. If this rheumy has his way and gets you off pred altogether the chances are you won't be able to work at all - so how are you supposed to live? If you have a doctor who is only concerned with stopping the medication that allows you to live reasonably well - and that is all they can offer us at the present - and who shows no interest in what you are actually experiencing during a chronic illness that came when it wanted and will go into remission (maybe) when it wants then I would be voting with my feet. 

    Since 7mg is what they call a physiological dose, most doctors stop panicking when you get to there - so why is yours got such a problem with you being below that? You have to have a rheumy because of the MTX of course - or I'd say discuss it with your GP. 

    As the rheumy the question: "Are you saying i have to give up work altogether just so I can take less pred?" And ask if he will pay your bills.

  • PMRPro and horas: Clearly the doctors think that something is bad about too many continuous adjustments up and down instead of just down. I'm not sure exactly why they are concerned. I have been battling this and GCA for 3 years, 7 months of which I was undiagnosed and did not have Prednisone. When I flare, I increase my dosage. One time after increasing I tried to decrease it every 5 days by .5 mg. (before I got too accustomed to the increase). My Rheumy said that this is not good for me. Maybe she meant that increasing the dose in general is not good for me. (But in a flare I have to do this in order to decrease the pain.) I now decrease more slowly after I have to increase the dose, maybe a reduction of .5 every 2 or three weeks, until I again run into more minor GCA or PMR symptoms. (Usually it's GCA symptoms.) Regardless, I have noticed symptoms of adrenal insufficiency since I have been adjusting the dose on my own, first using PMRPro's method (trying to reduce in general below 7.25) and later just trying to make up for the increase on account of a flair faster than PMRPro's method. I don't know if the symptoms of adrenal insufficiency are what the doctors mean by saying "it's not good for you." I have experienced an emergency hospital stay one time trying to reduce below 7.25 in .75 mg. increments (on PMRPro's method) and later, a darker melanin patch of skin on my back, hair loss under the arms and in my private parts and sometimes intermittent days when I can hardly move because I'm so tired--all symptoms of adrenal insufficiency. Until now luckily (I guess) it seems that eventually most of the symptoms of the adrenal insufficiency abate (I wonder about the hair though). But Re: The problem horas' doctor has with his changing doses, maybe his doctor is worried about adrenal insufficiency, and the risk that it will become permanent. But clearly doctors think that something is bad about too many adjustments up and down instead of just down. I go back in June and I'll ask my Rheumy to be specific as to the reason for the worry. Maybe they mean that horas should take 7 mg. each day. I now believe in (PMRpro's suggestion of) a little jolt of increase under conditions of stress which stress is not scheduled as in work day stress--stress like international travel, or huge family problems. Without the jolt I seem to have a flair during these times and the set back is much greater than that of a little increase (jolt).

  • It has been said for some time that yoyo-ing the dose in PMR/GCA is bad - but that tends to be if you get into a pattern of reducing to such a low level you induce a flare (reducing too fast or too far is the primary reason for flares), having to go back up to manage it, reducing, flaring, rinse and repeat.

    If you use enteric coated tablets then you can only smooth your reduction by alternating the old and new dose - say 7.5 and 5mg - because they cannot be cut or by using plain white tablets as well which are absorbed at a different rate. Horas is doing nothing other than that - and it is often suggested by doctors. His alternating doses like that is often done so shouldn't pose a problem.

    As for possible adrenal insufficiency - you have only one way of dealing with that and that is to reduce very slowly - small decrements and with a few weeks at least between steps. If, once you are down to about 5mg, there is fatigue that gets worse as you reduce, however slowly you go, then really an adrenal stimulation test should be done to assess whether the adrenals are CAPABLE of producing cortisol. If they are potentially able to do so, then you reduce even more slowly, remaining at about 5mg for months if necessary before continuing the reduction. If the stimulation test indicates that they are not going to be able to produce cortisol at all - the answer is replacement therapy. Which is a low dose of pred or hydrocortisone. Hydrocortisone is also an option instead of pred, some endocrinologists think it is more likely to result in return of adrenal function.

  • As usual PMRpro you have the answer. Now I know that Yo-yo- is what my Rheumy was recommending against. I'm sure that everyone knows: Once we slooooowwwwwly get down we hate to raise it and then start again so very slowly. But it's necessary. My prednisone is not coated. And I DO have many different dose pills. My brain tumors are probably "no problem." My heart and carotid arteries are good. And I am not blind. I have visual trouble "navigating." (Apparently that is a term of art.) My 6th cranial nerve acquired "palsy." My left eye turns in (o...something). I have diploma (cross eye-ness separate from the turning in.......) Maybe some of it can be corrected by surgery when the eyes "settle down." But again I am not blind. These are the things which I need to concentrate on. I admire DorsetLady and Ray so very much. It's possible that with my hard contact lenses (one out) I can work with one eye, leaving the other not seeing into the distance [-8.25 diopters so without a lens it doesn't see into the distance]. Maybe then I will not see so many images and can "navigate." But for right now I'm pretty blue. But I'll get out, feel the spring and get over it. Nothing else for it, really. Thanks again.

  • Hi Asbeck,  Your post has made me realise that I too may have sypmptoms of adrenal insufficiency.   I have an almost total loss of private parts hair, underarm and leg hair, bad fatigue some days and darker patches of skin.  I havent mentioned this to my doctor as I thought it was just side effects of pred.  I also have in the last few days felt slightly faint on getting up from a chair or bed.   Did your doctor tell you that you had the symptoms of adrenal insufficiency?

    I am on 7 1/2 mg of pred, have been for over 5 weeks.   

  • Hi Jan24. All my doctor told me was that I was "right" to go the hospital one early morning. (Those symptoms were terrible.) She also said that certain things are not good for me. PMRpro identified these "things" as probably being my yo yo-ing my dose (after having to raise it for a flair). (I just couldn't stand the slow reduction all over again.) But it was a dermatologist who pointed out the dark patch of skin without calling out my adrenal glands. If you research secondary adrenal insufficiency they mention the darker skin and the loss of hair as a symptom. If it makes you feel any better, my skin became all the same color again. And now most of the time my fatigue isn't that bad. Most doctors here in the US (after you've been on prednisone for a while) try to give you 2 or even 3 weeks at a dose before they try to lower it. They do this so that the adrenal glands can catch up. (My pulmonary guy told me this. People with lung problems sometimes take pred.) And PMRpro's method seems to ease the adrenal glands along and maybe even trick the underlying disease. Personally, I feel that some adrenal insufficiency is almost a given. PMRpro says that your current dose is about where your adrenal glands need to begin to pitch in again. My hospital saga was when I was trying very slowly and properly to decrease from 7.5 to 6.75. The dark patch of skin was at about the same dosage. Now I've been at 8 for about 2.5 weeks. The intermittent, horrible fatigue is abating. I think that most of the time the adrenals start working perfectly again eventually. Generally they test them at about 5 mg if you continue to have trouble.

  • Hi Thanks to everyone for your Replies.

    Personally I think PMRpro has got the right idea about this fluctuating. I don't notice any withdrawal symptoms in what I am doing maybe because it's masked by the pain. I am probably at a realistic level of 7 mg to control the symptoms but my Rheumy has kept pushing the dose down. When I am on 5 mg even on an easy relaxing day I still have pain by the afternoon but it's bearable. If I work on 5 mg I can barely get to lunchtime before the pain really kicks in. I then can't even pick something off the floor without extreme pain. On 7 mg I can get through the day fairly Ok and have just low levels of pain by the afternoon.

    I am self employed so can just my work schedule to make sure I work for 2-3 days and then have a long weekend to recover I guess I am lucky in that sense.

    On the last visit to my rheumy he asked me how long that I have been working for. I told him that I am 56 and have worked since I was 16 years old. His response was that I have worked for over 30 years so should be able to retire. It just shows how disconnected that he is from real life for most people. I was quite shocked that he had no understanding of the retirement plans in the UK. I do probably need to think about changing the type of work that I do but that is not so easy at my age especially to find something that I can fully support  my wife and 3 children. He is trying to get me to drop to 4 mg but I explained to him I would then be just stuck sitting down all day in pain. He has no understanding of the pain in this illness and he seemed surprised about my response. 

    The next time I see him I'll suggest that I increase to 7 mg daily and see how he reacts. 

    I'll also explore the option to see a different Rheumy.

    It's really helpful to hear your responses. I hope all of you continue to make a recovery in good time. Regards Horas

  • What a numpty! 

    Yes, until this year you only required 30 years of contributions to be entitled to a full state pension, now it is 35 years of contributions - but even if you have 40 years you can't have that pension until you are 65, soon to be 66. As a doctor he will have a very nice pension thankyouverymuch - not free, he will have paid for it - but he may retire at 55 (with 5% deducted for each year before 60). He may retire for one day and then go back doing locums or part time or... 

    Honestly - get in the real world Mr Rheumy! We self-employed people have a very different reality - not sure how long I have to live to break even on my private pension that pays me the grand sum of well under 1K a year.

  • Tapering prednisone at the 5 milligram level has been an issue for me  as well as many other PMR patients... when I was down to the 5 to 6 milligram level my sed rate was normal at 5..... morning to midday fatigue was quite common. I am trying to use oral temperatures as a gauge as to whether I am prednisone depleted... since my wake-up oral temperature falls below 97 degrees Fahrenheit, I assume that I cannot lower my prednisone levels below 5mg yet... I like your idea of elevating your Prednisone during "stress days".... but "thinking like an adrenal gland" is quantitatively  an inexact science... has your rheumatologist considered giving you saliva tests. Also it might be important to check your thyroid levels... ultimately it is very difficult to depend upon your subjective feelings concerning your steroid needs.. get all the pertinent objective testing that will help you with your decision making such as sed rates, oral temperatures, and ultimately cortisol levels utilizing saliva testing. In my case I started prednisone at the 30 milligram level 13 months ago. I now need 6 to7mg to function and occasionally take an extra milligram or two on my "stress days"... also may I ask my doc to check out my thyroid levels, which in some cases can be a confounding factor....Good luck....jbarie

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