Well my goodness how amazing it is to read a post by someone,in this case the person above,and learn so much from those who respond that might be applicable to my situation.
I was instructed to reduce from 15mg to 10mg by my rheumy' and of course received lots of advice about that in a previous post. However having incurred the wrath of said rheumy on a previous occasion I have continued as instructed. For the last ten days every single day has had a clear pattern,wake up,take the waste to our recycling area,tidy the apartment,breakfast then after sufficient time for water tablets to work drive to the sea front and do a walk.Back home for coffee,probably second coffee before lunch at one p.m. Some days cleaning,others a quick hoover,some days make dinner,some days shopping then carrying shopping up two flights of stairs, but generally always on the move doing something such as odd jobs etc,
Anyway,the last ten days have revealed a big change around lunchtime,absolute loss of energy,sick feeling,not interested in eating anything,trembling, just a complete wreck. Then I read SheffieldJane,SnazzyD and others explaining that OscarandChloe was describing them to some extent.That seems to me how I feel.
I take 100mg of Zomorph(morphine tablets,) 24/7 (plus Oramorph when needed,morphine liquid )now 10mg Pred/day,Omeprazole,Bumetanide twice/day,Alendronic and Folic acid/Methotrexate 15mg/weekly,Adcal-D3
With all this junk inside me,reducing too quickly,taking Pred' on a split dose of 5mg morning/5mg teatime,fairly active days/incorrect diet is it possible that mid day my system has run out of cortisol and at this level the Adrenal system is not supporting my needs ? I would add that whatever is happening I am not getting any PMR symptoms. (yet)
I would love to hear any opinions please.
Written by
yorkieme
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You SHOULD be OK in terms of adrenal function on 10mg, especially split .
However - just reading that timetable makes me feel exhausted! I don't think you are running out of cortisol - if it were that you'd feel less good in general - I think you are just overdoing things in general and hitting the brick wall of fatigue!
Thanks for your response. Your previous advice proved quite cathartic,probably what I needed,after much discussion my wife and I ended up in tears something I just cannot recall happening ever. I just seem to have reached a point where everything seems impossible but that has changed somewhat thanks to you and many others on here.
How in Gods name have so many of you survived for so long with this terrible disease but still able to give support to others ? x
We learned all we tell you from personal experience first and listening to others second. We squirrel away all that information and offer it up in the hope that it will help you. Some of us worked in healthcare, some are just lovely people who suffered unnecessarily because of ignorance on the part of doctors and hope no-one else will lose their sight if we get there first. It's a vocation I suppose. Our charitable work - everyone has a place. Ours is here.
I am sorry that you feel rotten too and a definite departure from what is normal for you. You maybe someone who absorbs less of the Cortisol and perhaps an Endocrinologist referral is called for. My practice pharmacist certainly thought that on 10 mgs of Pred it could be a factor with me ( in spite of me, PMRPro trained, arguing that it was too high a dose of Pred for adrenal insufficiency ).
I like the sound of your neat routine. Mine is get up, have a shower, get dressed, wobble, lie down again. 🙁
Have you had a medication review ? You are on a horrible lot of meds. They can just suddenly stop being our friend in my experience. That lot would drain me. Keep in touch. I envy you the seafront, never cut that out. 🌈
Thank you. I think my time for listening has arrived,really listening. I will discuss the review with my G.P. His standard response to my feedback on side effects has been "well Mike it's the medication," "Mike it is a complicated case," "Mike you are getting on a bit," lol. Maybe I need to stop laughing.
Not long after being diagnosed with PMR, I spent a double appointment in tears at my GP's surgery. Since that day we have the best relationship! Sometimes we do really need to tell them 'how it is'.
At that dose, no PMR (GCA) and aged 55/56 at the time I couldn’t do all that even before my adrenals needed to work, especially with all those powerful meds in as well. I would check the theory by doing more or less nothing for a week and then see how you feel. I was still having a hour’s sleep in the afternoon just to get through the evening of domestic activity. It could be that your body is just plain exhausted, but yes it could be low cortisol if you are a low absorber, but the remedy is the same, slow down!
Hi, im now down to 8mgs of Pred from 40mgs. Other tabs for BP etc. I have to say now im on a lower dose my energy is slowly coming back,like you i seamed to run out of steam in the afternoon and the shaky jelly like feeling of weakness in my body was awful. I dont know about you ? but mine felt as if i was getting over a bad case of flu ! Im seeing my Dr soon and am going to ask for blood tests to see exactly where i am now . I now feel like im in control of the Pred instead of it being in control of me !! Hope this helps and you feel better soon. Best wishes Viv.
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