PMRGCAuk
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Flare at 50mg and carbs

I inadvertently ate too many carbs without realizing now am suffering a flare after being at 50 mg for 10 days.... my question... can too many carbs do this? I have GCA and pmr. Upped my dose today to 55, after 3 hrs no relief but now have low grade fever also, took another 5 mg, afraid of blindness, took another 5 mg, total 65 mg today. Totally depressed. Am resting. Will try to contact my doc tomorrow for advice but I think y’all know more on this site. Will CLOSELY monitor carbs!!

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Hi gtate1914,

Wouldn't have thought carbs would affect you in that way, more likely to be down to the fever - or at least whatever is causing that.

How quickly have you reduced down to 50mg? That probably has more of a bearing on things.

Please speak to doctor when you can, and don’t worry about blindness, you are now on a good dose of Pred; the most dangerous time is pre-diagnosis, pre- Pred!

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Hello, can I ask, what are you calling a flare and when did it come in relation to the reductions?

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On day 10 of being at 50 mg, down from 55. Temple aches, eye aches, jaw soreness, though not severe, but defintley felt. Vertigo, fatigue. Low grade fever 99.1

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Had not had the low fever since early diagnosis of gca, about 2 months ago. Having a hard time reducing. Maybe instead of 5 mg go down 2.5 at a time for what length of time I am not sure. Maybe by how I feel.... weekly?

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Going by how you feel is the way in my book. So many factors come into play. Generally if I start to feel rotten on days 1-4 it is withdrawal which can cause headache. If it is 1-2 weeks, it see GCA as having a bit of a go which has always passed, so far, when I’ve slowed right down (from not much) or addressed the stress.

A week of too much sugar (still low by normal standards) twice, has brought the GCA knocking at the door.

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When you see GCA a having a bit of a go or comes knocking, what do you do? Up your pred?

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and what are your GCA symptoms that come knocking? Are they strong or very light?

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No, I don’t, I have just stopped doing anything, rested, destressed, visualisation. It has gone away in a day or two. However, everyone is different and you get to know how your body is working. I wouldn’t just go up without speaking to my GP at the very least. I guess if I had full blown GCA symptoms again like I had in the beginning, I would go up and then speak to the doc the same day. It is a case of not getting oneself stressed out and ending up doing knee jerk actions that may be overkill. You may have had a virus which just stirred things up a bit or be getting some withdrawal which used to feel very similar in the early days.

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Sounds reasonable.

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Hmmmm? I too have PMR & GCA. I have, on occasion, since I stopped eating them, cheated and eaten to many; I experienced bad digestive problems and felt wicked sick, but nothing resembling a "flare."

Also... I did not think we needed to be concerned about blindness if we were already being treated with Pred for GCA? Can someone tell me I misunderstood this?

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Deviation coming gtate excuse me.

We all know when that was mamici1! So glad you survived your birthday and your typing finger at least is in good working order! Sorry you got digestive problems and felt wicked sick. I wonder if when you go on an exclusion diet, it makes you more sensitive. I can honestly say that carbs and sugar do not warn me with ill effects except of course looking like a heifer in photos, which I can’t destroy because I am always with a beautiful grandchild in them.

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Photoshop 😈 😉

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I wish I knew how. My daughter told me off for minding telling, me that it is more important to have photos together. It’s all right for her, 5 ft 10 and reed slim. Vanity, vanity. 😩

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I completely understand. There are very few pics of me throughout my adult life, mostly because I've been the picture taker. When on our holiday one of our fellow travellers insisted on taking a picture of hubby and me with my camera. I look okay, actually, but because hubby was leaning slightly forward, and with the angle of the camera, he looks twice my size. Sigh. I only hope that at some point the pictures one of the tour escorts was taking all the time gets posted somewhere and there will be a half decent one of me. Of course, every time I noticed what she was doing I would tend to look away, or duck out of view behind someone else so if there isn't anything I've only myself to blame. :D

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I sort of make a funny face, too self conscious. I used to wonder why my granny hated being in photos. To me, she was just herself. Now it’s me 🙁

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I remember my gran asking who was in the photo she was looking at. "YOU" we said..oh god I look as old as Methuselah she replied. We didn't even notice as everyone over 25 was ancient to us kids at that time. I will never be 5 10 or slim. But got to say seeing myself at opticians with those weird testing rigs on was strange. Without my glasses I don't have any wrinkles in the mirror. Get new glasses this week. May the goddess be kind and my steam cleaner robust. Suspect new glasses will be revealing!!!

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😎😊

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; )

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Obviously the biggest danger to sight is pre Pred (or too little Pred), pre diagnosis. But you still need to be aware for the first few months even when on Pred. Not paranoid, just aware!

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Cool, thank you for the clarification! I'm 6 months in and still on 45mg, I should be okay, right?

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Yes you should be fine...but as I said just be aware of anything that doesn’t seem quite right with your eyes. Don’t let it consume your thoughts, but you know if something doesn’t “feel” right then get it checked!

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got it. cheers xxx

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It depends on the dose - at 40mg and above it is very unlikely you would lose your sight but never say never. PMR doses are NOT enough to prevent the sort of inflammation that could lead to blindness - although a few factors would probably have to coincide. Sometimes patients need 100mg to get the inflammation under control - you aren't likely to get to that sort of state when still on high dose pred but I have come across doctors announcing that 10mg is enough to protect your sight. Er - NO!

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Probably not carbs, still in the learning stage. I thought my tapering was going ok then whamm! On day 11 symptoms began. So hard to know what to do.

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Day 11 is always the day I feel the effects of the new dose, reduced dose I mean. Ano increase in dosage improves things in 3 or 4 days usually.

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The low carbs advice is because we gain weight so easily and quickly. It wouldn’t precipitate a flare, well not in my experience. It doesn’t sound as if 50 mgs was enough of a start does and you did right increasing it. Do keep your doctor informed as a matter of urgency. It would be normal to be under the care of a Rheumatologist with GCA. It is quite logical and sensible to fear for your eyesight and Prednisalone is giving you the protection you need. Depression and mood swings can be a side effect of Prednisalone but it is not inevitable. I actually had a lifting of low mood when I finally got a diagnosis and treatment. Perhaps you feel depressed because you are frightened and don’t feel in control of your symptoms. You do still seem quite ill and it is early days. Things will improve. Stick with us. It’s a big boost to talk to people in the same boat who can advise and support you along the way.

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What you say makes sense. Yes, I am frightened and don't feel in control at all. I'm not even sure how much to take tomorrow...... I will leave a message with my rheumy in the morning. She does have a tendancy to want to taper me more quickly than I think I should be ..... Thank you for the reassurance.

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Also, please remember you are fighting several battles... the symptoms of the diseases', the side effects of the Pred and withdrawal symptoms from the Pred.

I felt okay on 40mg, but disease symptoms (headache) still in the background. I was increased to 60mg and felt great! Until we started to taper down; the withdrawal was too aggressive and by the time I got down to 45mg I thought I would die! Rheumy had to increase me to 80mg, to get the same relief I had been getting on 60mg.

The increase to 80mg presented it's own unique problems! Like a cat on a hot tin roof!!!! I was hanging from the ceiling by my fingernails! Horrible!

Then we started a more reasonable taper down and it is working... I'm at 45 again and feeling good. Fingers crossed.

I wish you luck at the Rheumy and hope you find a plan that works for you.

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What did your more reasonable taper down involve? How quickly, amount? How long are you staying at 45?

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So after having been increased to 80 mg; I stayed there for 30 days and then started reducing by 5 mg every 30 days... it is a slow and agonising process, and right now I'm only down to 45mg (which is where I was months ago, when I crashed and burned!) but I feel good, so I cant complain! When I get to 20mg (which will be like September) we will go to a "dead slow and nearly stop" method, but she has not told me what tat plan is yet.

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You will learn to recognise your own symptoms and how steroid withdrawal feels. Usually if I get symptom around 12 to 14 days after a taper it's usually a sign I need to remain to slightly higher dose a bit longer. Pains that start within a couple of days might be steroid withdrawal and you can try simple pain killers. The first few months are hard as you get to know the nature of your beast.

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"The first few months are hard as you get to know the nature of your beast." Oh dear I am definitely a slow learner. Almost a year in and still confused by taper. Got gradually down to between 7 +6 but felt bad. Doc said go back to 8 for a month and see me again. Now due to see her again and realised I haven't made appointment and they usually have to be made way in advance.🙄 pred head indeed

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Well at least you can fully see you are settled at 8. 🌻

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Part of the weight gain is that high blood sugar is difficult for the body to process. It is a complex biofeedback process. But basically the excess glucose cannot be used effectively so is stored as fat. Thus if you become insulin resistant you start to store the fat. The more carbs equals more "excess energy" your body stores but seems to be in specific places due to the involvement of specific organs/hormones. Far more complex than I have stated here but my brain won't put the words together. 🤢

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PS for most of you that had "normal" blood glucose you should go back to usual biofeedback process. With obvious caveats re adrenals etc.

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Not sure what this means Poopadoop. My last bloods were normal.

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That's great. It was more for people who have been told they are prediabetic or have steroid induced. They should go back into normal ranges.

Your system is dealing with the glucose as it should if your hba1c is okay. You probably still have spikes post Pred but not for long enough to impact on your hba1c.

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Oh and you are down in 7mg range of pred now so that shouldn't be an issue.

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What’s with the body then? I know, I am sedentary too much and I eat more than I need. You are right about where it appears - face, upper body and tummy. 😠

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If you don't use the input energy then it contributes to the fat I am afraid. I have the shoulders of a prop forward these days. I once saw a documentary that measured whether constant movement effected weight. It put forward idea that people who are constantly moving...even if it's just jiggling leg etc didn't put weight on as easily. I don't believe it but I keep trying to jiggle my legs and feet like a nervous jiggle. Hasn't made much difference yet 😂

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I heard that too. Fidgety people are slimmer. I am as still as a statue hence.......

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😊😃' statue still' like Bing bunny on Cbeebies

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Hurrah for Bing Bunny!

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You can tell the grannys on this page 😉

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🤣 I invested ££££s in Thomas the tank engines and tracks. It appears that he’s moved on to Carz.😦

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I am watching bake off: the professionals. I am putting weight on watching it!🤢

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“if you become insulin resistant you start to store the fat.”

You store fat anyway, that’s what insulin does.

I’m a ‘constant mover’, foot jiggler, finger tapper, walk while on phone, etc, my Dad’s the same, and we both tend to be slightly underweight, so I’d have to agree with that theory.

Then there’s the theory that heavier people have to move more weight so use more energy than a lighter person.

That said, you can become insulin resistant at a ‘normal’ BMI. Although obesity will make it more likely.

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Like I said...more complex than I stated. I have had diabetes for years and finding a way to get family to understand the processes and when and why I need food (or don't need it) is a nightmare. Worse than trying to explain PMR!

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I have been a fiddler and jiggler since I saw the programme but am still carrying a small person on my back. Immobility certainly makes massive difference. Since 1999 I have been differently mobile and that's when the small person climbed aboard....I was too slow to cast them off. Little minx 😫

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It must be tough having diabetes, let alone chucking pred at it.

Hope you get to give the little minx the heave-ho at some point.

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Unfortunately they all want to get us off steroids quickly, but you need to be sure that the inflammation and symptoms are under control before you start reducing. A normal start dose for GCA seems to be 60 mgs and as you suggest, drops of 2.5 would be gentler when you feel ready. That might be in a week or two. If you rush it, you just tend to have to go back up again. The key is to listen to your body, that low grade fever is a big clue. The disease is still active. Good luck, I am sure that all will be clearer and better soon . Then you can back with all the nitty gritty questions.

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When you were overdosing on carbs were you also in a place where you were perhaps quite active, a family gathering, something like that? Maybe you overdid it emotionally or psychologically as well as dietwise? You may feel better if you are careful to treat yourself as though you have a bad case of the flu, and rest as much as you can, with gentle outdoor exercise, like a walk, if you can, but not too much activity. For a while I was finding even a pleasant coffee get together with a friend would strangely exhaust me. It does get better, though.

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Ohhhhh great point! YES!

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Bear with me here and re ramble caveat is the I had diabetes prior to PMR...

I do think the consumption of highly processed carbs can make you feel ill especially when on high dose steroids. The steroids make your blood sugar spike. In the old UK measurements the normal range for blood glucose is between 4 and 8mmol. Even with insulin Metformin and a weekly injection my meter shows me that 2to4 hours after pred with NO food the reading is up to 4mmol higher at 8mg of pred. Pre insulin on just 15mg of pred my readings pre food were 24- to 30plus. Sometimes so high my meter couldn't read it. Thus I should imagine that 50plus mg of pred would spike bloods....add processed carbs and blood sugar would be very high at least for a period. The symptom of hyperglycaemia include fatigue, muscle pain, nausea, irritability, heart palpatations, sweating...even low grade fever. I am not saying everyone on high dose pred would experience these symptoms. But it is possible that consumption of processed carbs may contribute to feeling rubbish. I am sure that those of us who have had high carb blow out can tell our own tales of feeling really ill afterwards.🌻

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My flares are directly related to high carbs I have noticed. Especially at Christmas and Easter when I ate way too much chocolate. That is when I noticed it the most. I had been doing low carb diet and lost a stone. My pain and flares reduces so that I hardly noticed I had PMR. So for me it is definitely a factor. More studies need to be done around this.

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I haven't fingers crossed had a flare (as yet) from Saturday evening eating out with family for OH's birthday. For last 2 months having been diagnosed pre-diabetic, having been on no sugar and very low carb diet, have lost 11 lbs.......and do feel better painwise, not all gone, but certainly an improvement, also with a little more energy. I had carbs and a dessert, and felt like I had eaten an elephant!......couldn't sleep, was very bloated, nauseaus , I am surpris ed how much the meal affected me..........Back to normal now, just hope it is al l worth for the glucose readings as well! I agree about research into diet and pain. Although think it is known sugar/carbs are inflammatory.

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I see there is a lot I need to learn! I'm trying to digest it. I'm thinking it's like "touch and go and see what happens and adjust". I stay strictly away from sugar, flour, pasta, coffee, red meat. Lost nearly 30 lbs since January and still losing even though it seems like I'm eating plenty. I try very hard to eat healthy, everyday. Took a dose of 65mg pred this morning, hope its enough.... was at 50 on my taper on day 11 which I thought was going well..... until this weekend when I crashed.

Thank all of you so much. This site is a gold mine.

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I think that probably partly answers the question. If you haven't been used to eating carbs recently then your body has adapated to that - my husband had abnormal readings when they did a glucose challenge with standard 75mg glucose. He NEVER eats more than 30mg carbs at a time so was overloaded. Sugar is highly pro-inflammatory and if you were just on the cusp it could have been enough to tip you over the edge.

It may be you are hatching a cold/flu or something as well. But if the raised dose doesn't help - straight to the doctor next time.

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Just to say well done on losing that amount of weight! Such willpower is commendable. Hope your new dose did the trick for you 😊

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I find that each time I have reduced I have problems. I have GCA, I was on 60 in Feb and reduced gradually to the 25 I am on since last week. About 2 days after reducing The "flushing" (very polite word for it) it is constant but seems to settle down a bit after 10-12 days. Also get headaches ,shooting neck pains etc they really ear you out. but Try persevering , it is rotten on the high doses. You will get there.

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You seem to have reduced very quickly. I too was on 60 mg beginning Feb 28 but after attempts to taper I'm back up to 70 mg now, trying to get symptoms under control. Low grade fever, headache, jaw sore. Like everyone else I want to desperately lower my pred. I know slowly, will try more slowly again. Did you have low grade fevers?

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Every time I have reduced, it really knocks me about and I feel so weak. I must be thick it never occurred to me to up it again.

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Was weakness your only symptom, no headaches, jaw soreness, fever? How long did your weakness last? What dose are you currently on?

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smaller steps would probably help that too.

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I do get all of those. I am seeing my GP next so I will ask her and see what she suggests. I hadn't realised that there were other ways apart from the list of reductions I had been given. So just assumed that everyone was the same.

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Hi gtate1914

A bit late coming in but I feel for what you are going through and it will get better, honestly.

I recognise all of your symptoms but never thought it was anything to do with carbs.

I started on 50mg for GCA/PMR and every time I reduced I got symptoms you describe, I was taught to go back to 50mg and get my bloods done. If they came back within normal range then it was withdrawals and not a flare - as the symptoms are the same!

Painkillers don't help but paracetamol can help deaden the pain and in turn help you relax.

It meant I had to reduce much more slowly and eventually I got to know my body and recognise my symptoms - which could take anything up to 8 days to settle but they did. It maybe what you need to do but with your doctors advice as you are very early on with your illness.

You will be feeling rotten until you get much lower say 20mg then you should take it even more slower to reduce, your rheumy should advice your taper. You need to get plenty of rest as stressing will not help the symptoms. Believe me/us we know what you are feeling like and can only sympathise.

The tiredness will remain until a much lower dose say around 6/5mg (a long way to go yet) so it's important to learn to pace yourself with everyday activities, one day will be good the next not so good.

You are lucky to have found this site so early on in your illness. I was three years not knowing these experts so learnt the hard way!

Speak to your doctor, rest and I hope you start to feel better soon.

Best wishes.

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Thanks for the encouragement, it helps. It comes at the right time. I'm very happy to have found this site.

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