Reaching lowest dose of Prednisone
Posted , 47 users are following.
I was diagnosed last November with PMR and started on 20Mg of Prednisone. It relieved the pain
immediately, and I have slowly been reducing the dose. I was on 8.5 mg on 3/30/14 and started using Eileen H's slow reduction method. I was in the midst of the reduction schedule and took 7.5 on 4/23. The next morning I was in agony. I took an 8.5 dose that day and wasn't completely better when I went to bed. However, this morning I woke with only mild stiffness that disappeared with an 8.5 dose. My question is how common is it to have a flare-up or does it indicate that 7.5 is too low for me. I really was hoping to get off of the prednisone. Any comments would be appreciated.
7 likes, 138 replies
EileenH gloster
Posted
The pred has not cured the PMR, it is there to manage the symptoms and as long as the underlying autoimmune disorder is active you will need some pred to control it. The idea of the very slow reduction is to reduce the likelihood of pain due to pred withdrawal which is so similar to PMR pain you can't tell which is which and often go back to a higher dose that you don't necessarily need. It also means you find the dose that controls the symptoms more accurately because the step between what controls and what doesn't is smaller.
This suggests the "lowest dose that controls the symptoms" for you at the moment is 8.5mg, possibly 8mg - but 7.5mg is not enough. If I were you I'd stick at the 8.5mg for a few months - as I say, Kirwan keeps patients at 10mg for a year but if 8.5mg does it for you that is significantly lower than 10mg.
We all know about the desperation to get off pred - it doesn't work like that though. You need the pred as long as the disease is active - in a way it's a bit like diabetes, you need the medication to control the blood sugar level and you wouldn't dream of stopping that would you? Pred is your friend, not an enemy. It allows you a decent quality of life with minimum pain - and that is the choice: you take enough to control it and learn to live with the other bits. No pred leaves you in pain and immobile - high risk for weight gain, osteoporosis, high blood pressure and depression. Plus there is the level of inflammation in your body which increases the risk of cancer and cardiovascular disease. Does this all sound familiar? It isn't a simple case of pred += risk, no pred = no risk.
gloster EileenH
Posted
jacqui35798 EileenH
Posted
5 minutes agoThe Rheumatologist gave me Methotrexate and told me to immediately drop from 15 mg pred to 10 mg.
The Methotrexate made me so extremely fatigued, nauseated and half my hair fell out. I stopped it.
After several Rheumatologists who told me I was crazy (only 1 told me not to dose down no more than 1/4 mg (.25) in a month), when I said every time I dosed down I relapsed. The one rolled her eyes at me! Then says that never happens and anyone she has had she just doses down and it is gone.
Do they overlook the obvious.... If it keeps relapsing, then I still have it! The SEDs etc. are slightly elevated, but I am also on prednisone that helps disguise it.
I went back to my GP, and he is willing to work with me on dosing down.
I am soooooo grateful I found this group, because I have made it down to 3 mg., but I am in terrible pain. I want off the prednisone so bad. The lethargy is really zapping me physically and emotionally. It seemed to start getting worse under 5 mg.
Has anyone else experience a "fight or flight" type reaction to a situation of extreme stress or something terribly emotional that was unexpected, and your body can't kick in because it has been on artificial steroids for so long, that you have a relapse?
I am just so glad to read that others are experiencing this same dosing down dilemma, as well as to read about the side affects and especially the lethargy. I thought it was just me.
Last question... has anyone had problems with their eyes, vision, blurriness and extreme tiredness in their eyes. We are trying to figure this out, and I did not know if it is another side-affect that others are experiencing. Of course there is always the fear of Giant Cell Arteritis, but my GP says as long as I am on prednisone that won't happen, but what if the dose is too low? So many question I have.
Thank you all!
Thank you so much! This has been an eye opener, and makes me feel somewhat "normal" in a very not normal situation.
Last note- Cut out all salt. I read every label and there is so much salt in processed food. I rarely eat out because of it. I even make my own tortilla chip, homemade soups, etc. to avoid salt. I am 5'2 1/2 anf gained 30 lbs. I lost 20 of that just cutting out as much salt as I can. I know when I had too much salt, because I will have that "pie face" in the morning. The only good thing about that is it hides any wrinkles [smile]
Anhaga jacqui35798
Posted
Jacqui, Eileen is great and she will likely see this post. But please be aware that the post you are replying to is four years old and most of the people you have replied to here may not be using the site any more or may not see your comments. You have some important questions. Please make a new post that all the current forum members will see. 😉
MrsO-UK_Surrey gloster
Posted
gloster MrsO-UK_Surrey
Posted
jacqui35798 gloster
Posted
5 minutes agoThe Rheumatologist gave me Methotrexate and told me to immediately drop from 15 mg pred to 10 mg.
The Methotrexate made me so extremely fatigued, nauseated and half my hair fell out. I stopped it.
After several Rheumatologists who told me I was crazy (only 1 told me not to dose down no more than 1/4 mg (.25) in a month), when I said every time I dosed down I relapsed. The one rolled her eyes at me! Then says that never happens and anyone she has had she just doses down and it is gone.
Do they overlook the obvious.... If it keeps relapsing, then I still have it! The SEDs etc. are slightly elevated, but I am also on prednisone that helps disguise it.
I went back to my GP, and he is willing to work with me on dosing down.
I am soooooo grateful I found this group, because I have made it down to 3 mg., but I am in terrible pain. I want off the prednisone so bad. The lethargy is really zapping me physically and emotionally. It seemed to start getting worse under 5 mg.
Has anyone else experience a "fight or flight" type reaction to a situation of extreme stress or something terribly emotional that was unexpected, and your body can't kick in because it has been on artificial steroids for so long, that you have a relapse?
I am just so glad to read that others are experiencing this same dosing down dilemma, as well as to read about the side affects and especially the lethargy. I thought it was just me.
Last question... has anyone had problems with their eyes, vision, blurriness and extreme tiredness in their eyes. We are trying to figure this out, and I did not know if it is another side-affect that others are experiencing. Of course there is always the fear of Giant Cell Arteritis, but my GP says as long as I am on prednisone that won't happen, but what if the dose is too low? So many question I have.
Thank you all!
Thank you so much! This has been an eye opener, and makes me feel somewhat "normal" in a very not normal situation.
Last note- Cut out all salt. I read every label and there is so much salt in processed food. I rarely eat out because of it. I even make my own tortilla chip, homemade soups, etc. to avoid salt. I am 5'2 1/2 anf gained 30 lbs. I lost 20 of that just cutting out as much salt as I can. I know when I had too much salt, because I will have that "pie face" in the morning. The only good thing about that is it hides any wrinkles [smile]
jennissw gloster
Posted
Ive met some people who have to do 1/4mg once they get that low and still use a plan for than like Eileens. I hope to get to 10 or 9 and stay on that for the year as advised. My Gp lets me do my own plan.
EileenH jennissw
Posted
We've got a few doctors in tow on this - but others are still ignoring the evidence in front of them that their patients simply aren't getting anywhere with their big steps version. Once that happens they start digging out labels like "steroid resistant" and "steroid dependent" or even "not PMR" and want to add in other drugs which still don't work.
I keep saying - never mind the vastly expensive trials with new drugs that no one is going to approve for use in the NHS as it is at the moment and concentrate on using pred BETTER. It's cheap as chips and works - just make it work without as many flares.
gloster EileenH
Posted
muirkelsi EileenH
Posted
I have just been given Prednisolone 2.5mg Gastro-resistant tablets by my doctor after having a blood test which still shows inflammation. I have always had that result with a blood test, but seemingly that does not show where the inflammation is in the body. I am now down to 10mg daily for my PMR, and apart from slightly aching arms and wrists I am ok. Being very lethargic is really my problem just now, as I really do not feel like doing much at all. Quite happy to sit with my feet up and read a book, but I know that I must move myself which I do under sufferance.
Thanks for all your help in the forum.
Regards,
Grace
EileenH muirkelsi
Posted
I had enteric coated for a long time and liked them. Then I got a dodgy batch of 5mg tabs, it was as if there was no pred in them! They 2.5mg ones I got were fine but of course I got through them a bit fast! Then I was switched to Medrol here in Italy - and that was a whole other story!
linda82701_USA jennissw
Posted
EileenH linda82701_USA
Posted
Basically you have a choice - you get the inflammation under control with 15-20mg pred over a period of about 6 weeks and then reduce very slowly and accept the side effects or you accept the "side effects" of PMR, if that is what you have and that is what it sounds like by your response to the initial pred dose.
Most people have experiences like this with pred - some worse than others. But unless you take enough pred you won't manage the symptoms and then there is little point taking any at all. To be on 20mg for 3 months is rather a long time - and does suggest there may be something else going on besides the PMR.
If you follow this link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find links to all sorts of resources and the "Bristol paper" in it is a paper written for GPs to help them manage their PMR patients without recourse to specialists. They start at 15mg - and then reduce in 2.5mg steps. We, as patients, have had the experience that there are many patients for whom this is too large a step once their body has got used to its pred supply. In the replies section you will find a very slow reduction programme which has worked for everyone who has tried it so far - you are looking for the lowest dose that manages the symptoms, not aiming for zero. In the early stages this management dose may be relatively high, it will reduce later but it is very dependent on the activity of the underlying autoimmune disorder that causes the symptoms to which we give the name PMR. The fatigue is part of the underlying autoimune disorder - the pred does not help that, you must try to manage it with rest and pacing yourself. Google "the spoons theory by Christina Miseriando" for a parable about that.
At various times I have put on something like 40lbs in weight - I'm a whole 5'1". And I have lost it again. I have never had blood sugar problems - maybe because I have cut carbohydrates drastically and lost that 40lbs as a result. Cutting carbs is also a good way of managing raised cholesterol levels.
But it is also not a case of pred is bad, no pred is good. PMR causes inflammation all over your body - and it is not innocent. In the long run it can give rise to other illnesses, especially cardiovascular disease and cancers. Accepting the downsides of pred reduces those aspects.
I know it sounds hard - but it isn't a simple equation.
linda82701_USA EileenH
Posted
EileenH linda82701_USA
Posted
Yes - my daughter is a whole 4' 10 1/2" - I'm tall in comparison! There is no place for an extra pound or three is there! She has bad asthma and has been on high doses of pred for the last couple of months - immediate blossoming as a result!
linda82701_USA EileenH
Posted
EileenH linda82701_USA
Posted
The rheumatologist I saw wasn't interested in my response to pred, he wanted it to be something else and use another drug - in the UK you are referred by your GP to a hospital. I never went back. A different GP in the practice accepted it was PMR and wrote the prescriptions - I wouldn't have seen the rheumy had I seen her first. Here in Italy I see my GP for prescriptions and that is all. She worked in rheumatology in a previous life and trusts me to manage my dose - I'd like to get lower than the 4mg Im on, she isn't bothered!
Follow this link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and download the "Bristol Paper" and the Mackie and Mallen paper from the BMJ in the research guidelines link. They are aimed at non-specialists to help them manage PMR. Maybe your internist will be interested and find them helpful.
ros85177 EileenH
Posted
EileenH ros85177
Posted
We on the forums have pushed SLOW for a few years now - from personal experience - and have found there are far fewer flares or discomfort from reducing the pred dose as your body protests at losing its fix of pred. The "king of GCA" in the UK tells his patients to reduce very slowly, 1mg over 3 months, once they get to 8mg, by doing 1 month of 8/8/7 repeat, 1 month 8/7/8/7 repeat and one month 7/7/8 repeat before getting to 7mg every day
The Spanish have good research groups - but I'd be surprised if the doctors have as many GCA patients as a UK rheumatologist though I might be wrong. Can you explain to the Spanish doctor that you want to be able to keep on good terms with your UK doctor - after all, if you return to the UK you would have to work with him in future! Who provides your prescriptions? Your UK doctor will provide enough pred to do the 1mg version presumably. I have PMR and when I had the same "problem" before we moved here to Italy full time I just said the symptoms were flaring if I tried to reduce faster. Now it isn't a problem, my GP here is the queen of slow reduction - she thinks even I try to go too fast! And I'm the queen of the "dead slow and nearly stop" reduction plan.
ros85177 EileenH
Posted
EileenH ros85177
Posted
My husband decided he couldn't take the NHS any more - all admin and cutting his budget instead of research and patients - so he helped them cut the departmental budget by taking early retirement as soon as he thought we'd enough income until our state pensions started. We had had some spare money about 10 years ago and had a choice: pay off the UK mortgage or buy a bijou little residence abroad. We lived/worked in Germany when our daughters were small and always said we'd return to a German-speaking area at some point. Our favourite skiing area was the Dolomites and it is German-speaking on the northern side - so we came to look and found a 3-room flat we could afford. That's all 2 people need to live in - there is an enormous balcony, cellar and enclosed garage. And we have a camper van. My husband works with someone a couple of days a week in Innsbruck - an hour and a half drive - which keeps the brain in gear and provides a bit of pocket money. I have been translating until last year - the "crisis" turned that tap off eventually but I don't mind, I "do" 3 PMR forums, moderating and providing "expert patient" info. I do some stuff with one of the research groups - again as a patient advisor. All good fun.
ros85177 EileenH
Posted
Will keep in touch!!
EileenH ros85177
Posted
Flutterbie57 linda82701_USA
Posted
EileenH Flutterbie57
Posted
sandy82540 linda82701_USA
Posted
I'm in Canada and was recently diagnosed with PMR in March, 2015. The disease came on very fast, the pain was excrutiating, it started in both my knees and quickly spread througout my body. My GP sent me to a Specialist at Toronto Western Hospital, who put me on a daily dose of 40 mg of Prednisone and within 48 hours the pain magically disappeared! My problem is - I'm a diabetic! Prednisone is wreaking havoc with my diabetes so much so that I've ended up in hospital a number of time with a blood sugar level of 31.1 mmol/L. Both my GP and Rheumatoid Specialist are now rushing me through the weaning process of Prednisone, Like you, I've been dropping 2.5 mg every two weeks with the hopes that my symptoms don't come back! I've experienced some aches and pains througout my body, mostly in my neck and shoulders but it's hard to say if it's symptomatic of PMR or part of the Prednisone weaning process? I'm down to 12.5 mg daily...Like you Linda82701 I too just want to feel normal again...my diabetes is currently out of control which, in turn, makes me feel quite ill and the Prednisone just exacerbates my feelings of not feeling well. Luckily, I haven't gained any weight while on Prednisone but I put this down to being a diabetic and habitually counting calories. I want to get off Prednisone as soon as possible so that I can be back to the way I was.
EileenH sandy82540
Posted
As long as the autoimmune part of PMR is active you will need pred to manage the symptoms - or you have to accept the pain and stiffness so it isn't as simple as just getting off pred asap. PMR comes when it likes and goes when it will - there is nothing you can do to hurry that.
Can you not reduce your carbohydrate intake to help manage the diabetes rather than calorie counting? The American Diabetes Association has recently approved the low carb approach as a means of short-term management of diabetes - up to a year or two I think, mainly because they feel that low carb is a difficult diet to stick to but I know plenty of people (including me) who have no problems sticking to it. I do it to lose weight while still on pred but there are diabetics who find it ideal. It is an obvious approach for someone who needs pred and for whom management of their BS becomes challenging.
You might find a blog called Diabetic Mediterranean Diet blog of interest. It is written by a diabetic doctor so not total internet hype.
Some people find that methotrexate does help manage on a lower dose of pred - they are in a minority but it is always worth a trial to see if you are one.
sandy82540 EileenH
Posted
The suspicion at first was that I also had GCA, I was experiencing many of the symptoms, so rather than wait and possibly have vision loss, they gave me a higher dose of Prednisone.
As a diabetic, I do limit my carbohydrate intake, if I didn't my numbers would be all over the place, but as a weight loss tool I would find it too difficult to stick to - that wouldn't work well for me. Counting calories is something I've always done, I do it to maintain my weight.
My doctor has mentioned Methotrexate to me and that she'd like to get me to a point that she can introduce this to me and see if I respond to it better than Prednisone...not sure if she wants me to take both Pred and Methotrexate? I'll know more when I see her next month.
Thanks for the diabetic blog information, I'll most definitely check it out.
EileenH sandy82540
Posted
Good luck and keep in touch
dan38655 ros85177
Posted
So you could say that I am in between what your two doc's are recommending.
linda57064 linda82701_USA
Posted
EileenH linda57064
Posted
You won't stay at 20mg for ever - the doctor will reduce the dose slowly to find the lowest dose that manages the symptoms as well as that starting dose is doing but it is a slow process and if you try to rush it it will cause problems. Be patient - the sode effects of pred do settle down some after a while. Don't give in to your feelings of hunger and cut your carbs lots - that will help quite a bit with any tendency to gain weight. But it is worth it, honestly!
Anhaga sandy82540
Posted
Tinaj linda82701_USA
Posted
Hi Linda, I was diagnosed with PMR in March 2016. Extreme pain & stiffness to my neck, upper arms, hips, groin, & knees. My Rheumy wanted me to take 15mg of prednisone. I refused. He then said 10mg daily was the lowest he could go. I thought since I was in pain the past 3wks. I'll try 5mg the first day. It worked!!! My CRP went from 16.8 to 3.5 almost normal. My pain & stiffness was 95% better!!! After 1 month I started having SOB, chest pains, hyper and fatigue, irritability, sleep disturbance, intermittent headaches, & just feeling out of sorts. I weened myself off after being on it for 2 1/2 months. I take supplements and foods for inflammation and immune building. I still have the pain and stiffness. I will take a NSAID 1x a week. Tylenol arthritis a couple times a week. That does alleviate the pain and stiffness. I'm hoping the PMR will burn itself out in the year or two as they say. I'm 64 and still working as a nurse. I can't wait to retire in a year and 6 months.
jacqui35798 sandy82540
Posted
The Rheumatologist gave me Methotrexate and told me to immediately drop from 15 mg pred to 10 mg.
The Methotrexate made me so extremely fatigued, nauseated and half my hair fell out. I stopped it.
After several Rheumatologists who told me I was crazy (only 1 told me not to dose down no more than 1/4 mg (.25) in a month), when I said every time I dosed down I relapsed. The one rolled her eyes at me! Then says that never happens and anyone she has had she just doses down and it is gone.
Do they overlook the obvious.... If it keeps relapsing, then I still have it! The SEDs etc. are slightly elevated, but I am also on prednisone that helps disguise it.
I went back to my GP, and he is willing to work with me on dosing down.
I am soooooo grateful I found this group, because I have made it down to 3 mg., but I am in terrible pain. I want off the prednisone so bad. The lethargy is really zapping me physically and emotionally. It seemed to start getting worse under 5 mg.
Has anyone else experience a "fight or flight" type reaction to a situation of extreme stress or something terribly emotional that was unexpected, and your body can't kick in because it has been on artificial steroids for so long, that you have a relapse?
I am just so glad to read that others are experiencing this same dosing down dilemma, as well as to read about the side affects and especially the lethargy. I thought it was just me.
Last question... has anyone had problems with their eyes, vision, blurriness and extreme tiredness in their eyes. We are trying to figure this out, and I did not know if it is another side-affect that others are experiencing. Of course there is always the fear of Giant Cell Arteritis, but my GP says as long as I am on prednisone that won't happen, but what if the dose is too low? So many question I have.
Thank you all!
Thank you so much! This has been an eye opener, and makes me feel somewhat "normal" in a very not normal situation.
Last note- Cut out all salt. I read every label and there is so much salt in processed food. I rarely eat out because of it. I even make my own tortilla chip, homemade soups, etc. to avoid salt. I am 5'2 1/2 anf gained 30 lbs. I lost 20 of that just cutting out as much salt as I can. I know when I had too much salt, because I will have that "pie face" in the morning. The only good thing about that is it hides any wrinkles
EileenH jacqui35798
Posted
"The one rolled her eyes at me! Then says that never happens and anyone she has had she just doses down and it is gone."
Any doctor who rolled their eyes at me would find it wasn't the PMR that had gone but me! How unprofessional. She is of course totally wrong - not just because the PMR doesn't go away with the starting dose which is presumably what she thinks but also some people are so sensitive to a change in dose they suffer steroid withdrawal pain that is indistinguishable from PMR for many people.
Your excess fatigue since 5mg is because your adrenal function is lagging behind your reduced dose - and do be careful. I realise you want off pred, who doesn't, but if your adrenal glands are not making up the amount of corticosteroid to the amount your body needs to function (the equivalent of about 7mg pred) then you can become seriously ill with secondary Addison's disease. The pain COULD also be to do with adrenal function - but far more likely is that - as you are obviously aware - the cause of the PMR (which is just the name, not the disease) has not yet burned out. If it is still active and you force the reduciton you will just end up back in the same state you were originally and need a much larger dose of pred to manage it. Anyhting under 5mg is a very low dose and won't cause problems.
But your GP is wrong - as a lot of people will tell you. if you reduce your pred dose of course GCA COULD appear. If a low dose of pred protected you rom GCA they'd use it. They don't.
This is a 4-year old thread - I really don't know how many people in it are still here so you would be much better starting a new thread that more people are likely to see.