I can’t believe it. I have a dosset box and in 7 years never forgot my dose. (6mg). I’ve always been a bit scared what would happen if I missed a dose! This morning I was shocked to realise I missed it yesterday. I never noticed any difference in the day. Took my normal dose this morning and feel ok.
Am a bit confused what it means though - does it mean adrenals kicked in? How come I didn’t collapse? I’ve been too scared to even try reducing after a horrid flare last year but think I’ll try now.
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Temeraire
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I remember when I was on 4mg and had to avoid Pred for 24 hours for a Synacthen test I didn’t feel too bad at all before I took it in effect 27 hours later. My result was not brilliant either. I suspect spending the night sleeping helped but I did find the hospital very tiring and was a bit useless for the rest of the day. My point is that it may not be obvious at 24 hours and it may have been a different story had you spent the nighttime hours engaged in more activity or being ill.
Just missing a single day is not usually a problem - but I wouldn't want to try more. A friend in France set off for the UK and forgot her pred, went a whole week without it. SHe had a bit of a PMR flare but nothing more. But it is something I wouldn't want to risk and the pharmacist I saw when I forgot to take pred with me for a few days agreed!!
That sounds like good news Temeraire! The fact you felt no different may be a good sign? It is difficult when you're on a low dose and I sometimes forget with no ill effects. In fact I've heard some people, when on low doses, take pred on alternate days. But, don't forget too often!
I’ve missed a day here & there over the five years & assumed everybody had done! I didn’t notice anything…but I think you would if you missed a few days!
I did the opposite- I took 7 mg of Prednisone twice plus an extra Synthroid. That happened because I was on the phone while getting my pills ready for the next day. Taught me a good lesson.
The daily shed of inflammatory substances [cytokines] that cause your pain won’t be controlled..and if your PMR and GCA is still very active, you will feel pretty rough until you do take your medication. Definitely not recommended when you have GCA
Thank you. I still don't understand the illnesses. The steroids take away the inflammation but I still have the illness. I don't understand what is meant by illness. I think I must be really stupid. X. If it's controlled with steroids how can I still be ill. What symptoms would I have. Sadly I'm going into work tomorrow to resign. I want to get better . Stress at work turns my brain to mush x
If you read my link it explains…but you might have to read it a couple of times
Maybe also have a read of these explanation on the charity webpage -
What is polymyalgia rheumatica (PMR)?
Polymyalgia rheumatica (PMR) is an inflammatory condition of unknown cause. It is recognised to be an autoimmune illness. It causes pain, tenderness and stiffness in the large muscles around the shoulders, hips and back. It mainly affects people over the age of 50 with the peak being in the 7th and 8th decades of life. It tends to affect women more than men.
While some people recover after a year or two of treatment with corticosteroids (steroids) some individuals may have disease resistant to treatment and need long-term steroids.
…
About giant cell arteritis (GCA)
GCA is a disease known as ‘giant cell’ because of the presence of very large inflammatory cells in the wall of the arteries, causing them to swell and sometimes become occluded.
The condition affects large arteries of the head, neck, upper limbs and the main artery of the body – the aorta. In old times, the condition was sometimes called ‘temporal arteritis’ because the temporal arteries were seen to be visibly swollen and the involvement of the deeper blood vessels was not recognised.
GCA typically afflicts people over the age of 50. Although it’s rare, it sometimes occurs in people in their 40s. The peak age for developing GCA is between 60 and 80 years. It typically affects women more than men and those of northern European descent. It is most common in Scandinavians. GCA is an auto-immune disease (disease of the immune system). People who get it have done nothing to get it, and scientists still do not know how it starts.
The main early symptoms of GCA are headache, feeling generally unwell, weight loss, drenching night sweats and loss of appetite. Over time, the blood vessels on the side of the head can be visibly swollen with tenderness on touch. Things like brushing your hair may become painful. In more advanced cases, people may find difficulty in chewing. Typically, it is chewy foods like a piece of chicken or a hard piece of toast that cause problems. The chewing becomes progressively painful rather than being painful from the first bite. If ignored, the condition can affect either part or whole of an individual’s eyesight. Very rarely, individuals may not notice any early symptoms and develop sudden painless loss of vision.
People with GCA need urgent treatment with steroids, which will usually prevent serious complications such as eye problems and blindness.
On the subject of work, not sure what country you live in [it’s useful if yiu put that in your profile but most have an Equality Act which means that employers have a duty to make provisions in your working environment to enable you to remain at work should you wish to. Have you discussed with your line manager and/or Human Resources?
I'm uk. I have tried. Was shouted down. I'm on a 16 hour contract. I'm 69. I waz told company regulations are that I have to be available to work over 50 percent of my contact hours. I've been there nearly 3 years and waz unaware of thst
I believed that stress at work had turned my brain to mush before my PMR diagnosis. Then after diagnosis, I realised that a lot of my stress was actually due to the illness having turned my brain to mush and then finding things really difficult that I used to find easy. Do not underestimate the effect that the auto immune activity can have on cognitive function. I was reading something a few days ago about it affecting concentration and recall and it also affects some language skills.
The PMR symptoms that we are mostly familiar with are symptoms of the underlying autoimmune illness. The steroids do not tackle this. They only work on the resulting inflammation responsible for the pain and stiffness and do not act upon the underlying autoimmune illness that causes the inflammation.
I have forgotten my morning dose quite a few times. I usually notice after lunch when my whole body deflates from exhaustion and the pain overwhelms me. I take it as soon as I notice and have survived so far. My worst was when I missed three doses in a row and realised after lunch on day 3, wondering why I felt so awful. I wouldn't recommend it as a thing. How your body deals with it seems to be very individual and you don't want to be one of the unlucky ones. My memory strategy is to link turning the kettle on for my morning coffee with taking my pred. It has to be first thing that I do, so that I don't forget. It goes wrong when my routine is disrupted for some reason. I've never been good at taking tablets and it a blooming miracle that I have managed the last 2 years as well as I have.
To remind myself to take my meds I start each get up by writing in little note binder the date time and my seven meds I take, and also I take my blood pressure. Then when I take my meds I write the time and check the med slotI record blood pressure and heat rate too. It’s a ritual. It’s not totally fail safe as I have forgot to record taking meds then I’ll check Later on to realize I didn’t put check or time so I then have to track my 3 brain cells to recall what I did earlier.
Good to hear the missed dose didn't affect you this time. If I miss mine I certainly know about it by late afternoon....feel ill, hollow feeling in chest, more tired than usual and generally achey!!! But I am on long term pred of 5mg.....10 years into this now!!! 🤷♀️
I know what you mean. I’m 7 years and have a feeling I’ll never get off pred but who knows. I’ll be happy to get low as I can though, at least to 5mg or less if possible.
I am absolutely fine on 5mg. The rheumatologist said I would be on it for life but there was no harm in me trying to reduce if I felt I could. To be honest I haven't felt able to yet, especially as I've had a couple of viruses this year. Maybe when the summer comes 😊 I still take all the accompanying drugs...Adcal and I was on Aspirin and Omeprazole but am now on Clopidogrel and Lanzoprazole 🤷♀️ Keep well and good luck x
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