hi everyone I’m just looking for a bit of guidance on how to deal with the side effects of the prednisolone. I’m struggling to manage my weight as I can’t exercise as much as I would like due to working long hours. I’m having really bad anxiety and a feeling of not being myself I don’t recognise the person in the mirror or feel like myself anymore has anyone else been through this ?
im struggling aswell with flare ups I’ve had 2 in the last month and now have been given diclofenac and back on a higher dosage of steroids(from20mg to 40mg) so any advice would be amazing please and thank you.
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Amydyton02
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Exercise is grossly overrated as a means to manage weight so don't worry about that! Weight management when on pred isn't easy but it is possible - those of us who have managed fairly well have achieved it by cutting carbs drastically - particularly processed carbs, added sugar and being VERY carefuk with fruit. The normal healthy diet doesn't do it with fruit and cereals playing too great a role. But it isn't keto - it is low carb. It is virtually impossible to get into ketosis reliably when you are on pred because it triggers the liver to release random spikes of glucose from the body stores in liver and muscle - and that is what puts you at risk of pred-induced diabetes and is also part of the weight gain problem.
I find this site very useful for learning the ropes - you don't need to join anything or buy cookery books unless you want to - learn the principles and what to avoid and learn to adapt your way of eating:
As you scroll down the page there are picture guides to what are better or less good things to eat. If there is anything you don't understand do ask and someone will try to help. Many of us have favourite tricks for getting round the changes.
I honestly have no idea no doctor had mentioned the possibility of it being takayasus. I didn’t have a biopsy as I was on the steroids too long before getting a rheumatology appointment they’re purely going off blood tests and inflammation levels.
I only ask because if they diagnosed it as Takayasu's, tocilizumab is approved for that without the limitations - and at your age, Takayasu's would be the usual conclusion. Maybe you don't have the usual organ symptoms.
I think most people have been through those feelings…..
In your first post I did give you a link to my introductory post- please have another read of it - now you are a bit further into your treatment etc, hopefully it will make more sense.
Weight can be lost by cutting carbs - but you do have to be really strict - not easy when you are working as you are.
Anxiety can be helped - either by medication or therapy - so please reach out to your doctor for assistance.
Working is very difficult with GCA - and your age - so no wonder you are struggling. Have you got your employers onside with your illness, they do need to make provisions for you… so if you haven’t already please speak to line manager, HR, occupational health, Union rep - anyone that can help - and if you are really struggling perhaps the GP to sign you off for a bit of respite.
Hopefully other members who are still working will be along shortly with more advice..
If you have had a couple of flares then you have probably dropped too low on your Pred, but going right back to 40mg is quite a hike, what symptoms did you have?
.. who prescribed diclofenac? It’s a NSAID- and they are not usually recommended alongside Pred as both can cause stomach issues.
Maybe have a look at this from FAQs - info about GCA -
I was having tenderness of the temporal area along with the shooting pains and jaw pain. I got prescribed the medication from an a&e doctor as it was all late and night and couldn’t get in contact with my rheumatology doctor so a&e was my only option. I haven’t been able to take the diclofenac today as I had server stomach pains from yesterday and couldn’t go to work today so decided not to take them.
I have cut my hours at work but I can’t afford not to work at the minute I was in sick leave for 2months and couldn’t get any help from anyone (government and family etc ) with money and to go back to work. Everyone at work is aware of my GCA and have made a risk assessment and plan for me with work.
Thank you for the response and the introduction page was definitely helpful.
So sorry that you are going through this. I went through this too. From an active person who played badminton twice a week at 56Kgs, i went up to 76 kgs without changing my diet for the worse. i know that frustration so well. I had to change my whole wardrobe, tried all sorts of dieting, fasting even - NOTHING worked. i just remember feeling weaker, more dizzy. It felt like even a glass of water could make me gain weight. I cut out the carbs, though not completely. (Impossible when you're vegetarian. I know others may disagree - but there have to be some joys in life!) And then when I started tapering, it all dropped off without any effort.
i felt so much compassion for you...i just had to offer my support. you have rec'd great advice...stick with us. i'm MUCH older and this group of troopers saved me from feeling so alone 4 years ago and helped me advocate for myself. i'm laid up with shoulder replacement surgery....but had to send a hug. stay...read the forum....come here often. good folks and welcome. xx
Poor Love. Yes we have all been there and this is a great site. Once you have traveled this road a bit it WILL get better.
One thing you say you went to A&E cos you couldn’t get hold of your Rheumatologist? Were you seeing one before GCA struck? Also have they given you Omeprazole? It helps line the stomach
I found not seeing myself looking back at me very disturbing at first, we don't have many mirrors now 😂 My appearance did change back as I reduced the dose so hang on in there and stick with this forum for good advice and support
Hi Amy sorry to hear that being prescribed high steroid doses they are never welcome but often neccessary. Stay well hydrated to optimise kidney and liver function and keep the system flowing. My experience is that over time your body settles into them except its important your physician requests blood tests biweekly in early raised dose stages to monitor impact. Hope that's helpful this is an opinion based on experience I'm not a practitioner and of course everyone's different. Good Luck with your treatment.
I've been on pred for 6 months and my weight has remained stable. I just cut out any foods with added sugar, and I strictly limit my carbs. My diet is probably closer to the low GI diet for prediabetes prevention than no carb or full keto. I do allow the occasional treat, or I think I would go totally bonkers. The main thing is to avoid the kind of foods that will make your blood sugar spike and limit your carbs to when you know you will need them for physical activity. That will both help control your weight and lower your risk of Type II diabetes from the pred. For work, you need to plan ahead to make sure that you have the right foods with you to see you through the day.
If I were you, I would check with your practice nurse to see if you are eligible to join the diabetes prevention programme. It's a UK NHS national initiative. You can do the modules online. I already have a pretty good grounding in nutrition, but I still picked up some useful stuff as I was prediabetic at the beginning of last year. All of the major supermarkets have loads of recipes online to help you plan meals and most flag meals that are for certain dietary criteria, e.g. low GI, low carb, calorific content etc.
As far as work is concerned, I also found it difficult to exercise when I was still working and was feeling so ill. I used to make sure that I got a walk in at lunch time every day. That would also help the anxiety. I can sympathise with the pred making you anxious. Unfortunately, I had to lower my dose quite soon after I started as I really felt like I was going out of my mind, but I have PMR and not GCA, and I am very responsive to the pred, so I was able to do that. Though, if the anxiety is unmanageable, you need to speak to your doctor as they may have options to help you.
Thank you so much I will definitely look into diabetes program, I didn’t know that the pred could cause diabetes? No doctor has told me this! I’m in shock as I’m a larger person I feel like I should’ve known this information. I’m just happy everyone has taken time to message and help me thank you !
It is a special sort of diabetes - in some people the pred triggers the liver to release random spikes of glucose from the body stores in liver and muscle. Cutting dietary carbs drastically - especially processed ones and added sugar - can make a big difference. And careful with fruit - the usual rules for healthy diet don't apply with pred.
, I didn’t know that the pred could cause diabetes? No doctor has told me this! I’m in shock as I’m a larger person I feel like I should’ve known this information.
Steroid induced diabetes is listed as a common side effect in the patient information leaflet. But that doesn’t meant you will automatically get it -I was on higher doses than you for my GCA -and I didn’t
Sorry, I didn't meant to scare you when I mentioned diabetes. As has been said, pred increases the risk, it doesn't mean that you will necessarily get it. I think it is good to be aware of what you are eating though as putting on weight can also raise your risk. Often people find that when they follow a low GI, they often lose weight. I fell into the pre diabetic category before I started on pred and I lost 2 stone last year, but the weight loss has stopped since I have been on pred. I am just happy that I have managed to keep my weight stable.
So sorry to hear about your situation. You will find from the comments it's a common plight. Mine too. I've gone from 50mg down to 7 and my face is still not my own. I lost 4 stones doing low carb/Keto. I also thought it significantly improved my brain fog. I know it can make you feel overwhelmed and I've been there too. For me the main thing is to acknowledge that you have a condition which has triggered these changes. Be kind to yourself. It takes time but you can take one step at a time (when you are able) and while you might never get back to your former self you can make small changes as you taper down, if that is the route you are taking. I'm going to make a post later about the changes in my journey along the route of PMR & GCA.
Hi, I sympathise. I put on a stone and a half in three weeks without changing my diet (I didn't know about low-carb at that point). I was well into my PMR journey before I discovered this forum following a big flare up when I got Covid which threw me into disarray and I didn't know what to do with myself. I have tried various diets, now trying 16:8 fasting with as lo carb as I can manage
Trying to avoid the moonface and weight gain that I had on a previous regimen of long-term steroids, and concerned about diabetes (my glucose was close to pre-diabetic, I found berberine, which has been a wonder for me. I have actually lost a little bit of weight over 7 months and I don'ton't have apples in my cheeks this time. Berberine is safe for most people and should be taken with milk thistle, which is a boon to the liver.
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