Hello Everyone,
What happens if i just "Cold Turkey" Stop the 6.5 mg of methylprednisolone?
I'm so sick of it all.
I've gotten very low on meds (even zero for a few days) and the pain and stiffness return so bad i can't function.
If i just quit, what's the worst that can happen?
Your adrenal glands may not like it too much dropping to zero in one go after long term use, although you are on quite a low level of cortisone. If it were me I would not just stop one day, I would alternate between zero and a small dose.
If i just quit, what's the worst that can happen?
You could have an adrenal crisis and be very poorly
Think you need a frank discussion with your medical team and tell them how bad you feel. You obviously cannot continue as you are.
Thank you.. Yes I have made an appointment with my awesome doctor from 2 years ago. I moved 4 hours away, but i'm going to him. Thank you.
Glad to hear… please let us know how things go.. all the best.
The worst case you become seriously ill from an adrenal crisis. All it needs is some kind of physical challenge that overwhelms any cortisol output you do have to. 6.5mg Pred is plenty to keep your adrenal glands suppressed to some extent. The lesser version is you feel dreadful in every way as you suffer a lower grade cortisol adrenal insufficiency for as long as it takes for your adrenal function to catch up which can take days, weeks or months. Depression or feeling overwhelmed is a feature of adrenal insufficiency when you get below about 8mg.
You need to be listened to, to get to the bottom of what is getting you to feel this way.
I can sympathise with how you are feeling and have felt like this too. I do know that there is a danger that I could die and I am sure you do as well, if I went cold turkey. The stiffness and pain would come back at the very least. I feel better having joined a joint pain programme at the local Nuffield Gym. It involves supervised use of gym machinery , health talks and floor exercises. There is free use of the swimming pool. Astonishingly this programme is free. It does change the mindset and makes the frustration of dancing with Pred recede. Something like this will make this bit more bearable
So many of us have felt fed up with it all along our journeys! We get it. As another member has posted, lower doses of pred impact our mood (as does high doses).
A chat with your medical professional is called for to discuss your options moving forward in the safest way. Drastic decisions made in the middle of feeling overwhelmed come with health consequences. Remember….these conditions impact our physical and mental health and most of us deal with PMR/GCA for years (not months). Sometimes it feels as if things are dragging on and healing is still yet so far away. Know you are not alone, we are here for you. Please keep us updated.
Hello, would you be able to direct me to the post you referred to above—“as another member has posted, lower doses of pred impact our mood.” Thank you, Jane
Have a look at this link in from the FAQs relating to adrenals glands - contains and advice and others experiences -
I was referring to SnazzyD’s comment in her post to you:
“Depression or feeling overwhelmed is a feature of adrenal insufficiency when you get below about 8mg.”
Additionally in the link that DorsetLady provided there is a list of symptoms associated with adrenal insufficiency including “Irritability, Depression or other behavioural symptoms.”
Hope this helps.
Thank you DL for following up on this question related to my original response.
You’re welcome, didn’t mean to butt in... force of habit.. 😊
Unfortunately, steroids offer immediate relief and mostly a pain free experience, including from other discomforts, not just PMR but, unless you cut back successfully within weeks of starting them, after being on steroids for a longer time it just takes long to wean yourself off them. As you have seen in other posts, body functions that get shut down just need time to restart and will do so very gradually. Also, because very few of us know what caused the imune disfunction in the first place, it could well be that the root cause of your PMR is still there, so symptoms are being masked by the steroids but will resurface when you stop taking them. Your doctor should be able to explain this and other things to you always in the context of your current and past health condition.
if you have tried before and been in terrible pain why do you want to now? I totally understand the 'sick of it all' quote! But I'm not sure you'll fair any better this time and as others have said your adrenals may have something to say on top of your pain. Do you have any support?
Heading back to my really good doctor from 2 years ago.. he is 4 hours away, but my health is worth it. my doctor here thinks she knows everything, says i don't have PMR, and all but refused to give me prednisolone. She finally offered a 15 day supply and made me get a ton of tests that I've already done... it was after that horrible appointment that i wrote the above.. so discouraging to have a doctor tell you don't need the steroids.. I'd like to see her manage this disease just for a day.
having a disease that goes on and on is incredibly tough....it robs you of life. Sometimes people refer to quality of life...my quality of life for the past 5 years has felt like it is practically zero...because of side effect of pred destroying my muscles. But would I suggest managing without pred...never! It removed the pain and that meant I can get out of bed and wash myself...cook etc . And I have manged to work every day (online). Now off the pred for a month and still have some fatigue and muscle weakness...but I am grateful to be alive, working, and looking after myself and my home. And things might improve...
Thank you for your personal story. I don't know how to do this for 5 years. I got this when i was 52. I'm a science teacher. i have to be functional everyday.. prednisone is the only way i can function. I'm so happy for your success getting off of this medication. i know things will improve.. Thank you for sharing.
I am sorry to hear how p...ed off you are with PMR. It is a bastard of a condition and most of us understand how depressed you might feel. (Actually, feeling 'down' can be a side effect of taking corticoids - or their withdrawal.)
Please, don't try to go 'cold turkey' from 6.5 mg/day. If you have been on corticoids (e.g. methyl prednisolone) for more than a couple of weeks, they would have suppressed your natural production of cortisol, which is an important hormone. Not allowing time for your adrenal glands to start up again is likely to cause problems.
If there is PMR pain, that indicates there is inflammation, which you need to get rid of. (Deal with the elephant in the room, before worrying about the mouse in the parking lot.) That may require further discussions with your MD or rheumatologist.
In my case, my first attempt at tapering down was too fast. Pain returned (which I tried to live with); then the inflammation increased (also confirmed by a rise in temperature), my temporal arteries became prominent and I got headaches (which I do not usually get). Note: around 15 % of PMR cases can also develop giant cell arteritis (GCA) - a.k.a. temporal arteritis.
You ask 'what is the worst that could happen'? (I expect, as a teacher, you know that in an exam it is important to answer the question asked.) I suggest that, in the runner-up spots, we have blindness and stroke, while the worst outcome is death. (Yes - melodramatic, I know, but you asked.)
Happily, I suffered none of those possible outcomes. After a brief return to a higher dose (30 mg/day prednisolone), followed by a slower taper, I came off the steroids completely in March, this year (34 months after my PMR started). So that is 4 months, now, without needing the 'Devil's Tic Tacs'.
Hopefully, if you 'stick with the plan', you will have a good outcome, too!
Oh please find some help; you seem in a very dark place. Tell your doctor how your mental health is suffering; they will help you. How bad are your side effects from the pred? I would be wanting to get that pain under control and up the pred - being in long term pain does nobody any good, physically or mentally. Can you get signed off from work? I too was a teacher the first time I had PMR - you just can’t do it while you are in so much pain - believe me I know. Don’t do anything drastic, we all know how you are feeling.
Sending love xx
I have made an appointment with my amazing doctor from 2 years ago. we moved and he is 4 hours away but my health is worth is. i was doing great with him...
My new doctor here doesn't even believe the diagnosis. says its arthritis...
I have to work... These responses have breathed new life back into me.. Thank you.
What is the worst that could happen if you stop longterm corticosteroids cold turket at 6,5mg? You COULD become seriously ill, requiring hospital care and - potentially - intensive care. It is not outside the bounds of possibility you could die.
Your adrenal glands have not been producing cortisol while on long term pred, that is the natural corticosteroid which is essential to life. If you stop the tablets, your adrenal glands require a few months at least to adjust, by which time you could be seriously ill.
And the PMR symptoms will come back in full force.
Please seek medical help as soon as possible.
Thank you..
I have made an appointment with my amazing doctor from 2 years ago. we moved and he is 4 hours away but my health is worth is. i was doing great with him...
My new doctor here doesn't even believe the diagnosis. says its arthritis...
I love this forum... thank you so much for your response
Adrenal crisis? I wouldn't like to try it. That can make you feel worse than ever and possibly get you admitted to hospital.
Hi, I too have felt like you but sometimes you have to accept how much your body depends on them! I am on many different medications which also mirror my PMR symptoms! I gave managed to get down to 5 1/2 mg with the help of this group do thank you! By taking a little Pred at night and the rest in the morning I can manage most of my symptoms and then top it up with paracetamol and can then get on with my day. If you just stop you will probably find you won’t be able to do all the basic things like getting dressed or climb the stairs and will then go back to a very high dose! I now balance some exercise and rest when I feel tired! Hope this helps 🤗
You must tell your doctor how poorly controlled your symptoms are at 6.5mg of methylprednisolone per day. Your profile is not complete or up to date, so I skimmed through your previous posts. I was concerned to see that your knees swelled up, despite being on 12mg/dy of methylprednisolone (which is equivalent to 15mg/dy of prednisone) and, after only 4 days of relief, the full-blown symptoms came back before you'd even started tapering! That is very unlike PMR!
PMR is a disease of the muscles (usually) near the joints, not the joints themselves. It is quite common for PMR patients to also have sub-clinical signs of arthritis, but swollen knees is not sub-clinical! Perhaps you have developed rheumatoid arthritis (or something similar) alongside the PMR? If so, your doctor should not expect the RA to respond to the same medications and dose as PMR, nor the odd pattern of burning itself out after a few years.
The current approach is clearly not working. Ask for a reassessment.
Hi ifeelold, please come back and tell us how you are doing. I find it helps to remember that I am juggling three issues, for me they are (1) PMR itself - pain, (2) being on Pred - buzzy, (3) reducing Pred - exhausted and woolly headed. When I don't feel OK I try to work out which it is. and then increase or reduce the Pred SLIGHTLY. At times I have felt so uncomfortable that all I could do was set off for a walk and put one foot in front of the other to see if it would help. It did a bit. I got into trouble going down from 12.5 to 10.00 too quickly and ended up in A & E, so now I would be afraid to reduce the dose quickly. Am currently trying to go from 6mg to 5mg. This is my second try at this as had to go back up from 5 to 6 on the first try. Rooting for you.
Thank you everyone.. Update.
I have reached out to my origianal rheumotologist. I see him next week. He is 4 hours away, but he cares and he listens. I am going to keep him because he tries so hard to figure this out. my swollen knees are the biggest problem. they just don't fit the diagnosis.
The doctor here in Crystal River is a complete joke. wont listen, knows, everything, made me get all new tests, etc.
Thank you to everyone who responded. It helps so much. Thank you
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