Hi all, I am on week 2 of reducing to 12mg but feel very tired and right leg achy. Tried to get down from 15 to 12.5mg before but struggled so have been reducing by 1mg per month. Falling asleep when I sit down early afternoon. Just wondered if this will pass as managed until this point with 14 and 13mg. I feel I need to reduce a but as have been on prednisolone for 4 months now.
Reducing to 12mg very tired: Hi all, I am on week... - PMRGCAuk
Slow but sure. I have been on prednisone since October 2018. Currently at 8.
Thanks alvertta maybe I'm trying to lower too soon. PMRpro suggesting I try 12.5mg so will give that a try.
I just got moved up to 8 as 5 mg was not enough. My GP kept trying to reduce me down too quickly. I finally got into a specialist & he moved me up to 8 mg so at least I don’t have the pain during the night and morning hrs. Now I suffer from insomnia! I’m hoping this will pass as my body gets use to the new dose. Does anybody have a couple of alcoholic drinks once in a while while taking prednisone? I’ve been on a low dose of prednisone since February & didn’t drink at all, but lately on Friday nights I’ve been enjoying a couple refreshing gin & tonics.
I'm on 15mg - after 12 years of pred! I have been lower, managed 4mg once but then had a relapse of the PMR and haven't really got down below 10mg since then and have had a few flares. You might even find 12.5mg is better - just 1/2mg can make a big difference. The underlying autoimmune cause of the PMR symptoms tends to be most active in the first several months - something a lot of doctors don't appear to take into consideration - and often it takes longer than the 2 months they want to get down to 10mg in. PMR sets the parameters - not the textbook or their timetable. If you try to force it, you will flare and need even more pred. Often waiting a month and trying again will work better.
Thanks again for your help. Will try 12.5mg and see if that is better. Don't feel as good as I was when on 15mg but assumed that was to be expected. Should you feel as good when you lower dose or is it just a case of coping?
No, it shouldn't be a case of "coping". You shouldn't feel worse in terms of PMR symptoms at the end of a taper step than you did at the start - although as you get to lower doses non-PMR related things such as osteoarthritis may reappear having been masked by the pred.
If you go to too low a level of pred for the inflammation being created every morning, all that will happen is that the left-over inflammation will build up, like a dripping tap eventually fills a bucket if you don't take some water out, and you will end up back where you started and needing more pred.
Some people get a bit euphoric on pred - and in that sense 15mg probably has more effect than 12mg, Can't really comment - pred never gave me wings!!!
Thanks PMRpro it is a hard thing to call. Feel as if it is all consuming knowing how to move forward. Other illnesses you are just given medication but PMR is something you just don't know what to do and how to progress. Get a bit depressed thinking about it all the time. Take it you are left to decide your dosage now that you have been on it for such a long time.
Here the local rheumy (a big name in the field), like a lot of other non-native English speaking rheumies, is not fixated on reducing pred at any cost. He knows I take what I need - not for fun. He knows and admits that many patients have PMR for many years and need pred ongoing - although usually at a lot lower level than I do. UK and US medics don't seem to have been willing to admit there is a variety of versions of PMR - although I have come across one or two in the last few months. I've suspected it for at least 7 or 8 years now - but it is all anecdotal.
tangocharlie has talked about her experience just below - and there are a few of us now on the forum. With a sample of thousands since I started on the forum, these things click more easily than one doctor seeing one such patient out of his possibly hundreds of different diseases -and I have a memory like an elephant for that sort of thing!
However, what is evident to many of us is that going slowly and not forcing a reduction is the way to a relatively smooth journey for a majority of patients. And it identifies the ones like me who have this blasted "Long PMR". But we are older and no longer of financial interest so we aren't interesting ...
Glad you can deal with it yourself and thank goodness you have a memory like an elephant as you have been very helpful since I joined!! Definitely don't take pred for fun that's for sure. As I have said before I am so grateful for the information I get from the forum and it is great to know you are not on your own. Thank you again.
On prednisone for 2 yrs now and presently tapering down to 5.5 mg. I'm the kind that higher doses of pred gives me "wings". I love it but still desperate to get off of it due to the other side effects. I have a hard time going below 7mg. My adrenals just don't kick in easily. I have been successful in getting down to this point by alternating daily .5mg doses for about a week before I go full time to the lower dose and stay there for another 2 weeks or till a feel strong and safe. I then try alternating doses till I get down by another .5mg. In the past I always had a terrible time in the mornings, but I have found the solution for me. I take 400mg of ibuprofen before I go to bed. (I do this with my rheumys blessing.) I have been pain free in the mornings and very happy. I think it relates to your dripping faucet concept. The ibuprofen lowers my inflammation a bit during the night which carries me to my pred dose in the morning pain free. This is the most successful I have been. Wish me continued success.😀
Definitely sounds as if you have found your formula. Will try similar small .5mg reduction too. Well done.
If the truth were told, many people's adrenal function doesn't kick in easily! Ask Snazzy about her experience. It isn't an overnight thing.
And just doing alternating doses is, by our standards, pretty speedy. It takes weeks for the body to catch up.
has links to some slowed tapering plans which can take up to a couple of months to get down by 1/2mg and there are people who had to slow it down even further to succeed.
"I'm the kind that higher doses of pred gives me "wings". I love it but still desperate to get off of it due to the other side effects. I have a hard time going below 7mg. My adrenals just don't kick in easily."
Truth be told ... this will potentially become a huge problem down the road. I do admire your honesty though. I can relate to this feeling as well. The trouble is, in order to sustain that, you will have the need to constantly increase your dose to control the pain, deathly fatigue and generally not feeling well at or about that 7mg level. That is what people always seem to do anyway. That's why so many people have a problem at that 7 mg level ... in my opinion.
Every time you have to increase your dose, it will just make it that much more difficult for your adrenals to kick in. I'm not being critical, I just think that's what happens more often than not.
I agree, I’m down to 12.5mg for this month (10mg) in the morning and (2.5 mg) in the evening seems to work. I still have stiffness in my hands from 15 to 12.5 but hoping to get through it soon. My Rheumatologist has me on reducing 10% per month till I get to 1 mg per month so it will be a while for me too. Thank you PMRpro for all your information and support. 😊
Hi, have a question about stabbing, searing and painful right thigh. After starting 15mls. liquid prednisolone I finally got relief after months on regular prednisone for my PMR symptoms. I have malabsorption concerns because of previous stomach bypass surgery. After starting on the liquid I immediately started with the thigh pain. Within days my rheumatologist ordered an ultrasound. It was normal. My question is I am still experiencing the sharp pains especially when I get up from bed in the morning and sometimes during the day. I am frightened by the chance of a potential blood clot because of the prednisolone dose. What does this sound like to you? I highly respect your abundant knowledge and experience. All help from any and all of you will be deeply appreciated.
I've just asked on another place you mentioned it - where is the pain? Could it be a sciatic problem? Back muscles, particularly the piriformis, can pinch or irritate the sciatic nerve - and it can be upset by changes in muscle tension in the back. If the 15ml pred was relieving the PMR inflammation that could change the state of your back muscles or it could be coincidence.
The risk of blood clots related to pred is very low - seen more in patients with lupus who have other risk factors anyway and at higher doses of pred. In all the years I've been on the forums I think there have only been a couple of DVTs or PEs with no real indication that the pred was solely responsible. When my husband had a femoral DVT he didn;t have sharp pain in the thigh - it was restless feet and calf cramp if I remember rightly. Long time ago...
I read your other response and replied. Your comments are interesting and have somewhat relieved my anxiety concerning a possible blood clot. I will continue to monitor the pains in this area (lower back, hip and right thigh)? All these mysterious aches and pains are mind boggling on top of the PMR and RA inflammation. I have started taking Omega 3 and Glucosamine with Chondroitin, plus a multivitamin per my Drs. orders. I also take 1300 mgs. Calcium with K2 and 4000D3. I also have osteoporosis. I am more conscious of my health needs now at 70 years old. All the information and tips on this forum are so helpful. I found this site quite by accident but thank God everyday.
Mine is a similar story to PMRPro's, 9 years and thanks to a massive relapse last Oct am back up to about 15mg-20mg a day. In my experience there is absolutely no point in taking less pred than your actually body needs - it is like PMRPro's dripping tap analogy, the inflammation just starts to build up like a puddle, resulting in a flare. You need to reduce the dose as the inflammation goes down, which is a bit tricky. As others have said go slowly and you are more likely to be on the best dose for your body at any particular time. Just enough to control inflammation.
Thanks sounds like I'm trying to reduce quicker than body needs so will increase to 12. 5mg as PMRpro suggests and stay there for a while and take it more slowly although gp will not be happy with me again!!
Remember the doctor works for you, not the other way round. You're only 4 months into what is likely to be a 6 year course of treatment. It's a little soon to be concerned about this level of pred dosage.
Hi Rosshigh. I've been trying to think of a polite but firm response you might consider making to your GP if he is 'not happy' with your wish to increase your Pred in order to reduce your symptoms. You know how Pred works to manage the inflammation in your body and it's clear that you need a slight increase in order for this to happen. If he/she protests you might respectfully say that you would be grateful if he will work with you on this and see how things go, especially as this would be only a small increase.The feeling of not getting the support you feel you need is unsettling and many of us here have learned to advocate for ourselves in a similar situation to yours. Stick to your guns!
You may not want to hear this but even though I'm currently feeling well on 2mg Pred, I still often need a nap on some afternoons. Might be old age but what the body needs is what the body should get. 😏
Hi 123-go thank you for your response. I know what you mean about gp as I have already told him when he said I would put on weight (hoping that would make me reduce) that it was all down to quality of life!!
Must confess I was not used to having a nap in the afternoon but maybe it is age related as you suggest. Glad you are well on 2mg but how long has that taken?
Weight management is possible on pred - we have a lot of people on the forum who never put on weight to start with and others who were able to lose much of what they gained.
There will be an FAQ post collecting the wisdom together soon - but in the meantime, cut your carbs, especially processed ones and added sugar. How much you need to cut varies - some of us (me included) have to cut carbs to approaching keto diet levels but not everyone does. Achieving keto is next to impossible when on pred - as it makes the liver release random spikes of glucose from the muscle stores and you can't influence that. You can cut dietary carbs though
is a good place to start
Thanks PMRpro will check out link. I must confess I have a sweet tooth at the best of times but it is worse now. Will need to reduce carbs as well. Don't want to end up with diabetes.
That is the pred - when it releases the glucose into the blood, that trigger release of insulin. The blood glucose level plummets and you crave carbs to bring it up. That triggers insulin production - same thing happens to create a roller coater effect that is difficult to escape unless you cut the carbs - including fruit, healthy carbs maybe, but carbs nevertheless. Cut the carbs - and you break the vicious circle and the cravings are reduced.
I have been eating fruit thinking that was good but obviously not. It is snacks that I want to eat as don't like large meals so need to find something to replace fruit and chocolate obviously. Will need to have salad and vegetables instead.
Carrots in limited quantities, cucumber sticks or rings give a good crunchy mouth feel, bits of cheese, cold meats, hard boiled eggs are good to keep ready in the fridge. Use blanched cabbage leaves or lettuce instead of carby wraps but with low carb fillings. If you use google you will find dozens of sites with low carb recipe options.
But you also need to cut portion sizes probably - so eat the same sort of food you would eat for a main meal, just a quarter of it.
Great thanks for the advice. Will definitely do what you suggest although not a fan of cucumber but plenty more I can substitute.
I can sit and eat a whole cucumber However - it was just suggestions to get your mind onto the snack track Most people think of snacks as being the carby options - but there are lots of other things you can adapt.
Hi PMRpro. It's that crunchy mouth feel I crave, ALWAYS after a meal, when I'm actually full. What on earth is that all about?
All sorts of theories about why we crave particular things - this
suggests it is a sensory and conditioned need - so maybe your meals don't have that, all too similar in what I call "mouth feel". There is a similar thing about "needing" dessert - and of course the joke is that that goes in a different stomach
So including a small bowl of really crunchy salad as a side might deal with that - I'm eating an enormous bowl (in salad terms) of cucumber, lettuce and radicchio with a dollop of hummus on top - the calorie count will be low but the satisfaction level enough until this evening's dinner ...
Quality of life as a result of correct management of the condition is your goal.
To answer your question, it's taken me three years and four months to reach 2mg Pred. I've had one or two blips along the way (see my profile) which have been handled successfully by my rheumatologist and only one disagreement with his research fellow over a tapering plan which was resolved amicably.
I can tell you that one day, some time into my own journey, I had this sense of being in a good headspace. It's hard to explain- I just felt 'different' and in a good way. This state of mind has largely continued and enabled me to remain positive much of the time with rare off-days. I'm sure there are others here who have felt that kind of 'Eureka' moment. I have come to realise that accepting what I have, continuing to learn about the disease, eating sensibly, adjusting my lifestyle as and when, staying active but not over-doing things and particularly-during this pandemic-keeping in touch with friends and family is the way forward.
I wish you well, and suggest, if it comes to it, that you print off some of the brilliant links our 'experts' have included in their replies to you and politely ask your GP if he will read them when he has time. He may be interested to know that a renowned rheumatologist famous for a lifetime of research into PMR/GCA had a hand in founding this forum!
Thank you so much for your reply 123-go I really appreciate everyone's advice. Think not knowing how long it will last or if it will settle is the hardest to get my head round. Wondered if I should ask to be referred to rheumatologist or stay with gp. I am very grateful for all the help and advice you gave given me 🙂
Good morning, Rosshigh.You are certainly within your rights to ask your GP for a referral to a rheumatologist who specialises in PMR. Tell him that you are struggling physically and that your mental health is suffering as it's been 5 months since your diagnosis and you feel you aren't making headway. By the way, you are also entitled to ask to see any letters or emails he writes about you that are sent to any other doctors/specialists.
You aren't by any means alone in not knowing how long this condition will last, none of us do, but it is in your power to advocate for yourself and to do what you feel is right for you.
Keep coming back to us as and when. Questions and conversation are a mainstay and there are so many knowledgable and trustworthy people here: there is no need ever to feel alone.
Thank you so much for your help and advice I cannot thank you enough. I will be speaking to gp in 2 weeks time so will have that conversation with him about referral. I cannot tell you how much speaking to you guys has guided me and made me understand the illness so much better 🙂
I had poor experiences with the rheumies I saw - although there are very good ones out there, they are few and far between. There are some who seem to think that PMR is a poor relation and beneath their pay grade to manage - either that or they really don't understand it at all! Some of the top names in the field have said recently at a meeting I attended that PMR and GCA are very complex and heterogenous disorders and one size definitely does not fit all.
A really helpful GP who is willing to learn with you is preferable to a poor rheumy who won't listen.
Not only will you do best by tapering in tiny steps, but you also have to live life more slowly. You say you fall asleep in the afternoon. If your life allows for that, then, just fall asleep, rest without guilt. Your body is working hard to get better, and PMR in particular can react badly to efforts to get back to our old pre-PMR activity level. I've found that even now, after several years of PMR/pred, that I need to rest for every period of activity. Even before covid made getting together with friends for a coffee a rare event I used to be exhausted after two hours of such socializing, so even pleasant activites can take a lot out of us.
I'm sure it's in a post somewhere on here, but can't find it right now. Google "The Spoon Theory" and "The Gorilla in the House" for descriptions of what it's like to live with chronic illness.
The link to "gorrila in the House and Spoon theory" is below.
Yep - what they said! I do think the trick is managing your energy levels - not expecting to be as you were pre-PMR, and knowing when you need to take a rest. It might only need 10 minutes, but if you don't do it, exhaustion, pain and low mood are probably the result.
Good luck! and don't let your doctor intimidate you 👍
As a long timer (pmr diagnosed 2012) and one who reduced too quickly at the start I can only stress the slowly does it bit. It was a while before my diagnosis so I guess the inflammation had built up a lot. I was a bit fearful of being on steroids at first, so it was all a lot to get my head round. The precursor to this forum, and now this forum provided really valuable help and support. Often we have to manage our condition, but also our medics! I only reduce by half mg now and use the DSNS method. At last I have reached the lowest ever for me, but have had flares along the way - almost certainly by trying to reduce too quickly.
My general rule of thumb is one output energy needs two recovery, but currently it is 1:5 at least. The fatigue needs gentle management and nursing. You definitely can not beat it. All this, of course, is easier said than done, but there is great advice on here.
As an aside, cucumbers have developed well into less repeating versions! I find they make a very refreshing snack, but also decent courgettes (not too old).
They always reckoned peeling cucumbers was what made them repeat ...
Noted. Will give them another try
I prefer English cucumbers as opposed to field cucumbers.
I can't remember there being field cucumbers in the UK - in recent years at least - but they have both sorts here. Though the "English" cucumbers all come from the Netherlands!
Some years ago it was being said the British-grown English cucumber was on its way out ...
I stopped buying English cucumbers (grown in Nova Scotia of course) because they persist in wrapping them in plastic for the supermarkets, only get them now when available au naturel in the summer from farmers markets. Hubby likes cucumbers so I get the field ones for him and he does peel them.
We do get them not wrapped in plastic sometimes - though I have seen organic ones in plastic which I really cannot get my head around!!!
Oddly, all our eggs come in that exploded cardboardy stuff - except, in the supermarkets, organic ones which are in plastic. Which is one reason I don't buy my eggs from a supermarket.
Mixed here but Italy changed the law so we are getting less and less plastic. Best of course is to recycle the paper boxes - the baker sells loose eggs so happily takes empty boxes back.
Yes, I can take my empties to the Farmers Market We actually have a really good recycling program here, but it's moot how much of the stuff does get properly recycled. However someone is making fake lumber out of some of our discarded plastics now so at least it's providing local jobs.
I am the same. After lunch just have to rest and have a sleep and then OK for the rest of the day. Have been so much better since taking my 13mg at 3 am no dizziness and breathlessness is much better. Legs not good but that probably due to the lack of exercise since March.
Rosshigh the waters ahead are rough. I have managed coming down from 60mg per day to 3mg per day for GCA. It has taken me 2 years in July and I would say that even now I almost sleep as much every day as I am awake. You really have to force yourself to do things rather than let yourself doze off in front of the telly. It really has been a battle for me - mind over matter. Steroids dont't mind and you don't matter!!
slow and steady is the way to go and listen to your body it will tell you when the dose is right for you. It is finding the dose that allows you to function and live a normalish life. Luckily for me both my GP and rheumatologist just ask what that functioning dose is when I see them. That dose can change due to flairs etc for example before Christmas my functioning dose was 7mg going down to 6.5, 6 too low. In Feb following flair (lockdown, loss of 2 friends and grief following death of my mum) 12mg was my functioning dose. I have tapered down since to 10mg. Managing the symptoms is the key rather then getting off the meds. Exercise and cutting down on sugar helps.
I am also a slow go on proper reduction. Now at 11.5 mg and PMR since October 2018 same as you. My first year was not managed properly by doctors who wanted quick reductions. I plan to start taking Leflunomide in June to help get down to at least 5 mg, this at my Rheumatologist's constant urging. We will see.
Like others, I'm one of the Long PMR'ers, 7 years and counting, Have been reducing by .5 mg for years. Been down to 10 mg a couple of times, but have been hovering between 13 and 14 for the last two years, thanks mostly to all the stress related to Covid, months of isolation in Panama and related stressors.
In the past I've tended to cheat and not religiously follow the DSNS reduction plan and suffered dreadful fatigue, often for the entire day. That kind of fatigue where the house could be on fire and I'd sit and burn. For almost a year now I've stuck to the plan, often repeating steps and have had very limited fatigue. When it happens for a few days in a row, I back up and repeat the last step of the reduction. However, I do need a siesta after lunch for 30 minutes to an hour most days. I would characterize my need for a nap as feeling tired rather than fatigued. Like others, it may be age-related, I'm 72, or due to the fact that I don't sleep well.
“…I feel I need to reduce…”
Feel the need to “attempt to reduce”. It’s not about getting to a specific dose or to zero in some arbitrary time frame. It’s about finding the minimum dose that will manage the disease without significant side-effects from the disease. I use zero side-effects although for some I understand that may not be possible due to other complications.
PMRpro as always hits the nail on the head. If 12 mg isn’t cutting it, increase by 0.5mg. It’s possible you may have to go back to 13mg for awhile (week or two) and trying 12.5 mg again. This isn’t a horse race to see who can get to the lowest dose or zero the quickest. Stop focusing on how long you’ve had the disease and instead focus on managing it. If you feel like crap the dose is too low.
I’m just a couple weeks shy of 2 years, currently in tail end of week 4 attempting taper to 3.5mg and even if I am successful, who’s to say 2 weeks from now I may have to bump it back up?🤷🏼♂️
I’ll tell you this it’s easier to decrease the step or bounce back to slightly higher dose than it is to manage a flare and restart trying to recover from the spike in inflammation and taper again to that magical dose that keeps issues at bay. I’ve learned that the hard way, but it finally sank in.
Don’t push it!
Please tell me about the leg ache. Am experiencing since starting liquid prednisolone 15mgs.Sharp, searing, stabbing pain in right thigh. I had a negative ultrasound almost right away. But still symptoms not relieved. It still scares me about a possible blood clot. I don't know if I should ask my GP about having another test. Any suggestions or similar complaints appreciated especially the from the well of experts on this forum.
Where in the right thigh? Do you have low back pain too? Could it be a sciatic nerve problem?
The right thigh pain is about 10 inches above my knee. This knee was replaced several years ago successfully. As far as sciatic I know that pain. I have had two major back surgeries in the last 40 years. I have noticed when I wake up the stiffness is located more on the right lower back and hip area. I also get a popping sensation when I move suddenly. Never felt this before. These symptoms are almost always early morning. I am an early riser now because of the prednisolone. Only sleep about 4-5 hrs. Thank you for the quick response. Any thoughts?
On the front or towards the side? Greater trochanteric pain syndrome might fit - and if it were me I think I'd want an x-ray to rule out other stuff ...
Sounds like you’re in a rush. Don’t be. You can always reduce by 1/2mg rather than 1. Slow and steady. Seems to me that suffering doesn’t help.
Wow Rosshigh you've gotten a lot of responses to your question! I was diagnosed in October 2019 and am congratulating myself for being down to 7.5 mg yay! I've tried before and the PMR pain came back, had a flare and had to go back to 15 mg and start all over. I agree with everyone who says slow and steady wins the race. So far I haven't felt any of my PMR symptoms so I am encouraged by that. Everyone is different and some have PMR for many years and others for just a few. As everyone has said, listen to your body, get exercise and rest when you need to and reduce slowly. I recently started taking DHEA which was suggested by my Rhemy. It may be the reason I'm having more success this time, I don't know. It is 100 mg and I ordered it from Amazon.
Hi Whitner some of the replies were actually not for me but that was OK I'm just glad to get advice. Will check Amazon for your suggestion and see if it would suit me. Well done to get down to 7.5mg. I have gone up to 12.5mg and feel a bit better so going to stick to that dosage meantime. Thanks for your reply.
Hi again just checked amazon and not sure what DHEA is. Can you let me know thanks.
They obviously are not enthusiastic about taking it.
Oh thanks for the link. DHEA was suggested by my rheumatologist. The last time I had reduced to 9 mg I had terrible fatigue and depression so I think that’s why it was suggested. I’m down to 7.5 mg and feel great so not sure if the DHEA is the reason or if my PMR is better. Time will tell I guess.
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