I am using DL's slow taper and have reduced to the dose which has caused flares in the past - between 5mg and 7mg. I have been on 6mg for over a week and have noticed feelings of hunger and the associated feelings of low blood sugar plus, this morning, tightness in the neck muscles and across the shoulders - also misty eyes with close vision. The muscles do not feel like PMR tightness - more stress related. The only thing stressing me at the moment is the reduction in pred.
I follow a low carb diet, so protein and veg for breakfast and lunch, yoghurt and berries for pudding and bone broth and linseed roll for supper. The only sugar I am aware of consuming is 2 squares of 90% dark chocolate plus, once a week, I might have a glass of white wine. If I am hungry then I eat raw nuts. I did develop pre-diabetes once I was on pred but that has been brought under control with diet.
My questions is why the symptoms of hypoglycemia now? Is it because the pred is being reduced and I am also keeping sugar in take low or what? I hate the jitteryness that comes with it as well.
I don't want to increase the dose again - this time I want to try to get through this stage even if it means fatigue or whatever.
If anyone has experienced something similar I'd love to hear about it and any advice is, as always, very welcome.
Many thanks.
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Miserere
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Would say it probably adrenal related, but as you say you are stressed it could be PMR struggling a bit as well.
As you know with adrenals the only thing is v.slow taper, small steps, etc…etc..
Perhaps stay at dose you are, and give the adrenals a chance to catch up… there really is no hurry at these doses.. and try and avoid increasing dose unless you feel really rubbish - sometimes you to have to grit your teeth and just get through the rough patches.
Thank you, DL - much appreciated. I am not stressed at all, at least not by anything I can think of; it's just that the feeling of tightness in the neck and shoulders is similar to feeling stressed as I remember it. I just wondered if the reduction in pred might affect the blood sugar levels if I am already keeping sugar intake as low as possible. I shall stick with it. Again, many thanks.
I rarely eat anything sweet but I think it does. So, for instance, I had a very small slice of Michael Mosley's orange cake (so low sugar and carbs again) and it feels slightly better.
It isn't just the obvious sugar that you look at - most non-animal foods and even some dairy products such as soft cheeses and yoghurt contain some sugars whilst all plant-derived foods, fruit and veg have some carbs.
The lack of cortisol/pred can lead to decreased glucose production by the liver and decreased glucose uptake by peripheral tissues, leading to hypoglycemia. So it could be.
Thanks PMRpro. I shall stick with it and see if things improve; it's just a bit disconcerting but I can't keep going up and down like a yoyo so will take it slowly and hope to get past 5mg and settle there for a while. Just hate the hanxiety, though and multi-tasking is now something long forgotten. A single question while I am doing another task throws everything out of my mind 🙃.
Below 7mg does become a bit of a problem as it is not just the pred reduction symptoms you have to deal with but also the fact your adrenal glands are having to leap or crawl back into action. For a lot of people they complain that they cannot go on sleeping.
Sleep! Well, the increasing ecxema in the scalp since I've reduced pred ensures I don't sleep! As soon as the head warms against the pillow (anything from 5 mins to an hour if I use an ice pack) and I'm awake and scratching and turning over and over. It disappeared altogether at 15mg and has returned with a vengeance! Not a lot going for me really, is there?? 🤣🤣
Did you know you can get cold caps? They might have a longer effect than an icepack though will cost more probably. They are usually thought of for hair preservation during chemotherapy
Wow! Quite expensive and it does say that they are usually changed every 30-40 mins. I can't wear a hat at all these days as they set me off as badly as a pillow. I will bear it in mind, though. Thank you.
That's for chemo - not as essential for just cooling. Something at the back of my mind is saying you can get pillows that keep cool - maybe that might help?
I need to get a new one - they are different now. I used to have a plastic one that was full of sponge that you soaked and then put in the freezer. Again, it worked for a while. I use talking books to get me to sleep - only way. Takes me forever just to listen through one book. 😂
I have had the sensation you describe and perhaps foolishly, just put it down to low blood sugar and I have eaten or drunk something ( a banana or fresh juice). You don’t have much wriggle room with your exemplary diet - hurrah for the tiny wine and chocolate. See your doctor though, your body is telling you something.
Did you break through it, though, Jane? I could try and see a dr - more likely just a discussion on the telephone as they leave me totally alone with this and have done since 6 months after diagnosis. I don't want them trying to introduce something else, like methotrexate etc. I've enough to deal with.
Strangely, put a similar question on to FB PMR group and two others have come up with exactly the same problem and both experiencing it at 6mg. No answers, though.
I am at the same reduction point as you, M, and have the same issues (except the misty eyes). And, sadly, I'm not quite as disciplined as you re the diet, though I do try to keep to less-inflammatory foods.
It will be worth it if we can continue to taper down (even though it feels like it's taking forever!).
Hallo CaraDee, I have come across two other ladies at exactly the same point as well - all of us at 6mg. Strange, isn't it? We have decided to keep in touch to see how each of us fares over this patch. Wishing you well!
Likewise at 5.5 mg. Good to know others are sharing a similar struggle. Grateful for all the helpful input. It is a struggle which requires much patience it seems. Thankyou all. X
I'm going to look at supplements for adrenal support and see if there is any evidence for their efficacy. If there is then they may be worth a try and I will also have to find out if they are compatible with Pred. If so, I may give them a try and will report back.
There is nothing that will persuade your adrenal glands to wake up quicker. Some of the products sold for "adrenal support" have had some rather dodgy ingredients - such as extracts of animal adrenal glands ...
The bottom line is low pred in the body at midnight-ish - so don't take pred too late in the day - and patience, sticking out the grotty feeling, It takes time, up to a year after stopping pred altogether, for normal service to be reliable. And there truly aren't any magic solutions.
Thanks, Pro - I'm sure you are right. Of course, I want to do anything that helps the situation and I want to be sure I've not dipped back into pre-diabetes for any reason although I can't think why I should. Onward and upward.
After being off pred for a few weeks I decided to try and loose some weight and reduce my calorie intake a little. I had a couple of hypoglycemia attacks and an episode of fast pulse which felt like it could be PTSD or heart problems. After speaking to a paramedic and a GP who checked me over it eventually subsided. I decided just to eat heathy and regularly. Perhaps we underestimate the powerful effect steroids have and how our bodies take time to adjust to reductions in medication and eventually coming off it.
Hallo Animalover65 - I am sure you are right and I shall increase my intake slightly if I feel the need as my diet is a healthy one. These little pills are wonderful and awful at the same time, aren't they?
They are wonderful and awful Miserere! I used to keep emergency milk chocolate in the fridge. The only problems was if I knew it was there most evenings watching TV seemed to involve an emergency!😂 Hope you feel better soon.🌺
Hi AnimalLover, I so agree that we underestimate the power of pred. They look like such innocuous, tiny little pills yet even a half can make all the difference. All we can do is to try and avoid stress (HA how do you actually make sure that LIFE doesn't happen?) eat sensibly (the Mediterranean diet seems to be the ONE) and get some moderate exercise - as much as our PMR will allow. All the best as we continue on, with a positive attitude, thanking God for this forum......
Hi Louisa 1840, absolutely! And what is really unhelpful is that the doctors don't seem to understand the powerful effects of pred! I was thinking that one of the strange twists of life and getting PMR has meant sharing experiences and knowledge with such lovely and interesting people on this site. I wish we could all meet up for a party but we are rather spread out.😊x
I am a bit of a technophobe but I have mastered Zoom. When I was working I had a counselling client in Australia I think we managed the time difference so it was morning for me and early evening for her.😊I know how to book a meeting and send you a code to join it. Perhaps if we could experiment and then see if any one else wanted to join.
Well done on mastering Zoom - I have used it in the past as well as Adobe connect but that was for work. It would be good to meet and share experiences.
I think you get 40 mins or so free each time before you have to pay - that should be long enough I would think? I will see if I can find messages - told you I was a technophobe!
You used to be able to leave the meeting before the 40mins was up and rejoin immediately from the original link - haven't used it for ages so they may have cottoned on!
Why don’t you and Animalover65 talk via Messenger (part of Facebook) -no charge. My daughter in New Zealand and I rabbit on that for ages.. and no faffing about with meeting codes etc
hello. I’ve also followed DL reduction plan & struggled to get below 5 & then 3. I’m currently on 0.5 & the tiredness, soreness, stiffness has flared twice now but just about manageable with pain relief. My appetite has increased alot since starting Pred 5 years ago & all the weight I lost has returned, but I’m determined to get off it!! I just go with the flow & try not to stress about things (life!) I’m currently have lots going on stress wise so try & eat sensibly & excercise as & when I can.. I hope things go well for you, it’s a marathon not a sprint!!!
Absolutely, Seasidelass. I will adhere to the diet and pay attention to exercise (I had a new knee 5 months ago so we are getting to know each other). Stress is a nuisance and hard to avoid all of it but I do try. Good luck and I hope things go well with your final reduction when you get there. Getting to 0.5 is so impressive!!
Thank you. Getting down to 0.5 has been a long,slow journey with some bumps along the way, but I hope it might inspire others that it can be done & Ive every inspiration grandkids who I need to run about after!!
As you are down to 0,5mg… I’d be staying for for some considerable time… especially as you say things are only ‘manageable with pain relief’. No point pushing too hard at such a low dose, and tbh 1mg of Pred is probably better than 0.5mg plus pain relief…
Just a quick question, Seasidelass - although your found it difficult to get below 5 and 3, with perseverance you did eventually manage it - just wondering how long it took. I've increased my dose as feeling not so great and will start the taper again,slowly, soon.
hi, you say you get the symptoms of low blood sugar. Do you actually test to see if you have low blood sugar? It could simply be that it is your adrenals struggling
Hi, no I don't have a blood sugar monitor - I rely on the diet that reversed my pre-diabetes so it is very low carb. I think it is probably the adrenals, so I am going to take things steadily, adhere to the current diet and see it through. If anything untoward occurs then I will contact a GP but I shall wait and see. It does not feel like a PMR flare, which is the good thing.
Well done on reaching below 5mg - that's my dream dose at the moment! Symptoms seem to vary at differing doses it seems to me - hopefully, once I get through this patch they may calm down again. Good luck with your reduction.
Have you had your Ferritin/ Iron, Vitamin B12 and Folates and Vitamin D level and a new Diabetes test checked in the last 6 months? Insufficiency (very low normal/ borderline levels) or deficiency in these can cause issues with insulin sensitivity and sugar levels as well as causing other issues like excessive hunger, change in fat distribution , dizziness, increased fatigue, joint and muscle pain and vision problems . The pain and stiffness in the body can feel very similar to that suffered with PMR before a full on flare up.
If you are on steroids for some time , and also take a PPI it can reduce how much B12 and Folate you absorb from your diet. The knock on effect is that you also begin to reduce how much iron and vitamin D you absorb and it can affect how much if your dose of medication you absorb too.
Add in the change into the Adrenal Phase of tapering steroids and the effect any adjustment the body needs to do to cope with taking over reacting to your environment and it can be a perfect storm.
If you don't really take it easy on the first few days of a new taper it can make you feel awful too, the lack of a speedy reaction to normal body needs can also cause a feeling of dizziness, brain fog and palpitations which is similar to and confused as hypoglycemia, particularly if you are linking it to feelings of excessive hunger.
If your diet has been very low carb for a considerable amount of time your body may also be indicating that you could need to increase the portion size of your complex fibre rich carbs that you include in your meals, which also include higher levels of B vitamins.
Thanks Blearyeyed, I shall look into this. It is at least a year since my last HbA1c and much much longer since any other tests so I think it is reasonable to ask my GP to do these blood tests. Whether I will get anywhere with it is another matter.
I am pretty sure that it is not a flare of PMR symptoms - it is purely lack of energy, feelings of low blood sugar, brain fog and odd feelings of a headache that does not develop.
I am also looking at increasing complex carbs in a sensible way and am finding that Yotam Ottolenghi offers a lot in the way of ingredients, flavours and recipes without compromising on sugar content.
At the same time I shall research supplements that support the adrenals and ensure that they can be taken with pred. There HAS to be a way ...
If you are in the UK and have a chronic conditions requiring drugs like steroids and PPIs Nice recommendations are that your GP should do the tests for B vitamins and Iron every 6 - 12 months for monitoring , along with your kidney and liver function tests and full blood count specifically because you can get medication induced deficiencies because of them.
Vitamin D can only be done every 12 months , a yearly diabetes check whilst on steroids is important because again, these can cause temporary changes in your diabetes status even if you have a good diet and a normal BMI.
Glad to hear you are progressing into the long term diet transition , I love YOs recipes , I find Micheal Moseleys recipes very adaptable and tasty too, similar to things I invented myself over the years for my husband before everyone realised the need to control blood sugar . My OH is Type 1 , so I just need to increase the carb element for him a bit but the recipes are so flexible for that it's easier to adapt what you make to each person's individual needs.
My GP leaves me alone - for which I am grateful. When first diagnosed she used to check by telephone for the first six months and then she disappeared from the surgery and no-one took her place. She seemed to be away with stress and was off for some time, and our check in sessions ended up with me counselling her rather than the other way around. Unfortunately, during this time, she neglected to tell me that a blood test showed pre-diabetes but I found out separately during a workshop with Sarah Myhill and was able to remedy the situation through diet.
So, I am probably off the radar as far as the surgery is concerned and they don't bother with blood tests or anything else but I have made the request and will see what happens. What I don't want them to do is to start adding medications - which they are wont to do with people. I twice had high BP readings in the surgery which resulted in the practice nurse lecturing me about stroke etc. and persuading me to take a calcium channel blocker which left me, after 2 days, wondering where my next heartbeat was going to come from. After a week I could feel 'nothing' happening in my body - a weird experience - and my digestion ground to a complete halt. The upshot was that I took the tablets back and said I would deal with it myself and bought a BP monitor. My BP is now fine and I don't let them near it. (It actually turned out that she had put the wrong figures into my records - far higher than they were). Understandably, I think, my BP shoots up as soon as I see the surgery doors and wonder what the hell they might come up with next - but requesting a blood test is OK.
I love YO - lovely flavours and simple recipes. I have all his early books and am just buying Simple having borrowed it first from the library to see what it offers - otherwise my husband begins to wonder where I am going to put all these cookery books which are a weakness, I admit. I now mainly use adapted MM and YO recipes plus my own. There is a pleasure, at least, in good food!
I shall continue investigations into adrenal support.
Just to let you know - B12 in blood above reference range and so is folate. Vit D normal, ferritin normal and HbA1c has dropped from 36 to 34 which I am very pleased about. I don't take a PPI at present.
Not sure how many of you will see this but I had a thought on my way to the farm shop this morning. I am reducing to 6mg from 6.5, which is causing me some fatigue, brain fog and feelings of low blood sugar. Is this because my adrenals are struggling and because the body wants more energy than they can produce it stimulates the hunger feeling. In other words, it's not necessarily heading towards pre-diabetes again but it is part of the struggling to get some energy to keep things working, i.e. some sugar I guess. This would make sense to me and sounds more easily copable with than worrying that I am pre-diabetic again.
I think reductions of .25mg from now on might just be a good idea ...
Many thanks DL - I think I shall try the 7 week taper and I may go back up to 6.5 and begin the taper again. I need to learn to pace myself better as well - from my new knee's point of view as well as the PMR. I appreciate your time and guidance - it's worth a lot.
Low adrenal function can cause low blood sugar levels - and that is what triggers the craving for carbs, If you eat carbs to cope with it, make sure it is complex carbs together with some protein/fat or you will just get a sugar rush and be back in the same placce an hour or less later.
Thank you for confirming this PMRpro - it makes sense and you are right, I need to avoid sugars and concentrate on protein and 'complex carbs'. I will have to add some in as I have very few carbs at present, however, I do eat a good amount of protein. Gosh, this part of the journey is a rocky one. Many thanks to both you and DL for sparing your time to help us. It really is very much appreciated!!
I assume it also accounts for the jitteryness, fatigue and generally feeling as though you are falling off the edge of the world-ish? I hate this so have taken an extra mg this evening and will increase dose from tomorrow prior to tapering more slowly again.
I hope this will be a final question. Do low sodium levels affect adrenal function as one reduces the steroid dose? I ask because I tend to run low on sodium. Because a blood test showed low sodium before the knee op I was given a month to raise it before a second blood test, and then after the op I was kept in an extra night so that they could top me up with a saline drip.
Everyone talks about keeping salt and sugar intake at low levels but following a healthy diet means no salted nuts, crisps etc. which one nurse suggested but I do have an electrolyte salt that I use when I think about it. People bang on about it increasing BP so I suppose I've kept the intake low and add salt at the table rather than during cooking.
It's just a thought - I shall shut up now but am beginning to feel a bit more like myself. Thanks.
Other way round: poor adrenal function leads to low sodium - and a craving for salty foods is a marker of adrenal insufficiency. And any patient with persistently low sodium should be investigated for adrenal insufficiency.
I went back up to 10mg for one day and am now down to 7mg again, where I shall stay for the rest of the week as we have a lot on.
At 10mg, after a full day, I felt so much better. On Saturday morning I crawled up the stairs, heart hammering etc. to get to my physio appointment (wish I'd picked one on the ground floor). However, by Sunday I could take the world on. I realise this is not a good thing to do (increasing to that level) but I am still trying to understand how this works.
There are many things that crowd in as I reduce, i.e. I clench my teeth from 7mg and the neck muscles just begin to tighten; My eczema gets much worse; emotionally I can feel like a wreck, certainly at 6mg and get very irritable (my poor husband). I think I am realising that I just need to go through all this but I hope it doesn't last all the way to zero - if I ever get there. I'd like to know what other symptoms that others have had - just a heads up in case they ever happen. If there was a place where these could be shared that would be great.
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