Diagnosed in August 2022. Started on 50 mg of Prednisolone , down to 35 in September, down to 25 in October & November & next week down to 20mg. As I am 77 years old have been told that I should also be taking Famotidine to prevent The steroids causing bleed in stomach. Do other people take this or lanzaprosol to stop this happening. The steroids have now caused me to be diabetic, I am starting on Gliclizide today & steroids have also caused raised cholesterol levels so must now take Atorvastatin. Has all this happened to other people
Giant Cell Arteritis ——-Medication. : Diagnosed in... - PMRGCAuk
Giant Cell Arteritis ——-Medication.
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CavalierKC3
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Hi, I am sure others will respond soon, but just wanted to ask, how are you feeling now on your dose? I couldn't get down to that dose in that time frame. One of the best pieces of advice I received from this forum at the very start was to cut out carbs, sugar and salt. I didn't go crazy but do not eat potatoes, rice, pasta or bread, luckily I don't really have a sweet tooth, but definitely miss salt. Hopefully others can steer you in the direction of suggested diets but it could certainly help with your diabetes and high cholesterol. I'm assuming from what you have written that you weren't diabetic before your diagnosis?
Regarding the Famotidine, I think a lot of us have been prescribed these types of medication, I personally try and eat well before taking my prednisolone and so don't take it any more, but my gp is not happy with me.
You've come to the right place for great advice there's lots to read in the FAQ's in the meantime.
Hello, these are two very commonly asked questions so you are not alone. Regards the diabetes and weight gain it can be avoided in most people though not all. Steroids can give you a chronically high blood sugar which has the same effect as diabetes but isn’t. That’s caused by the Pred inducing the liver the break down it’s glucagon stores into glucose. Add to that whatever a person eats and a glucose storm ensues. The poor pancreas can’t keep up or your body stops responding to insulin. Sometimes it can cause diabetes if the pancreas packs up, but either way the effects are the same. Many of us have reversed this and the weight gain that comes with it by severely reducing carbs as Sophistree says. How much depends on the individual as for some it just means cutting out white carbs and for some of us, like me and PMRPRo that mean cutting out all pasta, potato, rice, maize, flours and sugars. Fruit and root veg may need to be kept an eye on. I had GCA doses and with this regimen I did not put any weight on and my blood sugars averaged normal. Some people have gone from diabetic levels to normal
Have a read of these posts from the FAQ’s section.
healthunlocked.com/pmrgcauk...
diabetes.co.uk/what-is-hba1...
Regards stomach protection, it is common to take something though many here have their ways of dealing with it. Personally I couldn’t get on with the ‘azoles and found the Famotidine type much better for a while. Being super sensitive to Pred I ended up having to have coated Pred until I was on low single figure doses but still have to have a decent meal with it.
I’m feeling ok on this dose. As regards diet, I don’t put salt on or in food. Didn’t think I had much sugar either. Hospital says diabetics has been caused by the steroids as has raised cholesterol levels. I don’t want to take Famotidine but pharmacists say older patients run the risk of bleeding in stomach if not. I always take Prednisolone when I’ve eaten a good meal.
It isn't just "sugar" - it is all the carbs present in ordinary food including fruit which can be very high in carbs.
but surely a good diet does include fruit & veg etc
A "good" diet depends on what you need. And in the case of weight, diabetes and pred, carbs are what lead to the problem as your body processes the carbs to form sugar. Whole grains and fruit are both healthier components of your diet, but they are both processed in the body to form the same thing: glucose. Too much of either means more sugar in the body, more insulin being produced and resulting low blood sugar levels that make you crave more carbs. You don't need anything like the amount of carbs in the western diet anyway and even more so the case when you are on steroids.
For many, just cutting processed foods is enough - there are carbs in all sorts of places in processed foods to "improve" taste and mouth feel. Buying natural yogurt and adding a few berries leaves you with far less sugar than buying a flavoured yoghurt. This site shows you where carbs hide in plain sight:
Snazzy and I have to get very low on carbs to lose weight - so low that one banana of the size they are these days takes us to our limit before we add anything else at all, the giant apples and pears on sale soon mount up too.
So yes, fruit is part of a healthy diet - but some fruits are better than others and above-ground vegetables have all the same nutrients with far less carbs. I'm not saying NO carb, I'm saying LOW carb, and that means making sensible choices. Many people say they have a banana and yoghurt with their muesli for breakfast - that is about double my carb allowance if I want to lose weight. It all adds up, a few grams here, a few grams there - and suddenly you have eaten far more carbs that turn to sugar in the body than you thought.
would you give me your diet for a day as I find all this very confusing, I don’t think I will ever get my head around all this. I am 77
I can't really - you probably wouldn't eat what I eat, I don't live in the UK!
However, I eat almost no bread of any sort - it is kept for a treat, The same applies for fruit - I've been eating pears recently, the windfalls from a neighbour's tree, half a pear at a time. I eat a large salad of salad leaves (lambs lettuce, rocket, ordinary lettuce and radicchio) almost every day with fish or meat. Or a make a tray of above ground veggies, cut into chunks and roasted in the oven. Lots of cauliflower and broccoli, sprouts, aubergine, fennel, bell peppers, moderate amounts of squash. I eat asparagus in season - living in Italy you become very aware of seasonality. I rarely buy flavoured yoghurts - natural Greek yog is my favourite. I use olive oil for everything, the only salt I use is in the herbs mix I use for salads and cooking.
I DON'T eat potatoes or sweet potatoes, I limit other underground veg to seasonal treats. I rarely buy cakes - when I do I cut them in at least half, sometimes thirds and eat them for the taste and the treat. I gave up baking many years ago but don't buy instead. My weakness is icecream - from a proper gelateria where I know what is in it! I do eat commercial icecream sometimes - I shouldn't really. About once a year I eat a pizza or pasta - otherwise, more veggies or salad instead of potatoes, rice, pasta to bulk out the meal.
It is relatively easy once you know what are high carb foods, and removing processed carbs (pretty much anything with flour and sugar in the ingredients and sold on a supermarket shelf!) . It means cooking from scratch so you know what you are putting in your mouth. When I make spag bol it has meat, onions, tomatoes and herbs. Look at the ingredients on a supermarket ready-meal - it will include a lot of things you've not heard of and some of them are sugars and other carbs.
if you want to eat fruit you will find that berries are the best, so for dessert I often have a full fat yogurt with blueberries
PMRproAmbassador
They are all common listed side effects of pred. I have never been at GCA doses, just 15mg and more over years for my difficult to control PMR. I have only used famotidine when I have had to use NSAIDs for more than just odd doses and have never taken a PPI. My cholesterol has been raised - on the two occasions I have tried a statin I have had severe relapses of the PMR. Now I am on an alternative called ezetimibe because Actemra also raises cholesterol - but don't know if it works yet.
One of the things we recommend on the forum is a low carb diet - not only does it help avoid steroid-induces diabetes but it also helps reduce steroid-associated weight gain. It is even possible to lose weight when on pred and reverse the rising trend of Hba1c without drugs.
I don’t take a stomach protector mainly because I wasn’t prescribed it but always take my pred with food.
As for diabetes I too was diagnosed about 6months after my PMR diagnosis. I was put on gliclazide which was magic and came off it at my first review as my hba1c was 39. I had changed to the low carb high fat diet and 5 years later I am still on it. The statin things seems to go hand in hand with diabetes diagnosis. I am a bit lax with taking mine but my cholesterol levels were excellent at my latest review at 2. 2.
I have to say being diagnosed with diabetes (steroid induced) has done me a lot of good, by changing my diet and exercising more I have lost 3 stones and feel a lot better so it is not all bad!
Good luck and don’t be despondent
DorsetLadyPMRGCAuk volunteer
This link from diabetes uk gives some idea of eating low carbs...good for your diabetes--and whilst you're on pred...
diabetes.org.uk/guide-to-di...
Have a look, you don't have to try and do everything at once, but might give you some ideas or what to eat, and more importantly what not to...
this has all happened to me. I stopped taking anything for my stomach when I got to 40 mg. Prednisone and I was fine. I always made sure I ate something before I took it. I never gained weight on prednisone. I also had drug induced diabetes and had to take Metformin until I got to 10 mg prednisone. Then the diabetes went away.
I also had very high cholesterol with prednisone and now it’s worse because of Actemra so I’m on Rapatha which is not a statin. It works a different way then a statin (which I cannot take) to lower cholesterol. Unfortunately it’s very expensive and my insurance only pays half.
Anyway, what you’re experiencing is normal on prednisone. At least it was for me
I have enteric coated steroids so don’t bother with stomach protectors.
Good morning l was diagnosed with GCA in May 2020 and started Pred at 60mg, l have had virtually every side effect on the leaflet in the box. I am border line diabetic, am taking Atorvastatin for cholesterol which is new for me and famotadine and Omeprazole at times. My rheumy was emphatic about taking a stomach protecting medication because of the steroids. I think you have done amazingly well too reduce so quickly l am currently taking 8.5,
when I was diagnosed I was given a 2 year chart with how I would take the steroid and I would taper down. I go by that whether I feel good or bad. I’m normally seen at hospital every 6 weeks. I started the diabetic drug yesterday, but don’t know if it is too strong as I started to feel as if I was going to faint etc think I was heading for a hypo if I hadn’t had something to eat. I am entirely fed up with everything to do with GCA & it’s side effects etc
I completely agree with you. Having to deal with the illness is one thing but the drug side effects are completely something else. Plus the worry of what is going to go wrong next with some part of your body and then having to decide if it's GCA or meds.
“when I was diagnosed I was given a 2 year chart with how I would take the steroid and I would taper down. I go by that whether I feel good or bad”.
That is maybe why you aren’t having a very good journey with your GCA.
By all means have a plan, but as many have found, life has a habit of getting in the way and disrupting that plan…and for some GCA lasts longer than 2 years despite what the doctors may think.
You need to feel okay before you reduce, and ideally you shouldn’t feel any worse as the result of any taper.
As I’ve said many times, the consultant ophthalmologist told me at the outset “you will be on steroids for at least 2 years, nearer 4 and maybe for life.”
He was spot on, just over 4 years.
Methinks you need a better dialogue with your medical team -if you don’t tell them you are having issues, they don’t know and assume everything is alright when from what you’ve said on here, it’s obviously isn’t.
they know everything about me. They say the Prednisolone has now caused diabetes, so started medication. They say the Prednisolone has caused cholesterol to rise so have started a statin. Have not seen opthomologists. Who else can you go by other than doctors & rheumatologists eyc
Unless you have sight issues you don’t necessarily need consult ophthalmologist -
but you do need doctors that treat your illness/symptoms not just go by the book -and as PMRpro says read the guidelines properly regarding individual treatment not just the “one size fits all”.
Didn’t develop diabetes on higher doses of Pred (higher than yours probably) -was already on statins, so cannot say if cholesterol levels worse, but now off them.
Unfortunately GCA didn't get the same tapering schedule - and it does what it wants, not what the doctor thinks it should. Fixed tapering plans rarely work and it is rather pointless to hand one out at the start before you (or they) know anything about YOU and YOUR response to pred and GCA. Every guideline I have ever seen, from different authors and different countries, has had a codicil: the tapering must be adjusted to the individual patient and their situation. There is very little, if anything, that outside agencies can do about that,
Good morning CavalierKC3- I just want to say I am so sorry to hear / feel your distress -as a GCA patient I know it is a life changing condition, and causes extreme anxiety especially when just diagnosed. Like you I was also given a 2year treatment plan but this did not factor in the possibility of flares- I had 2 flares which resulted in a dose increase, on both occasions. There is so much knowledge, experience and expertise on this Forum which helped me get through the bad times ( not just the physical lows, but also the emotional lows) - 2years and 7months post diagnosis I am now on 1/2mg. of Pred and really hope to end my treatment on 1st December. Do take very good care of you and I hope your friends and family show you the kindness you need at this time, and in the weeks/ months ahead.
I have just gone on to Atorvastatin this last week. I took omeprazole for about 10 months from diagnosis of GCA last December but gave up due to distention around ribs and burping. I am now on lanzoprazole. I take 5mg prednisolone after breakfast of porridge. I am not diabetic but my blood sugar levels are a bit raised and this is kept under review. I have cut down on potatoes but mainly eat an ordinary diet.
GCA Feb 2021. Yes all this happened to me. This is an individual choice and depends on the severity of your side effect conditions, but personally I always try a natural approach before taking prescribed medication. These doctors are trigger happy with their prescription pads.
Pre diabetes came on twice while on higher levels of pred and twice reversed to normal. The first time I did a low carb diet (not no carb) and was very pleased with myself but my consultant smiled and said I think you'll find it was reducing the pred. The second time prediabetes came back when I increased pred; this time I didn't go low carb and without doing anything it went back to normal again as the pred reduced.
However I felt extremely well on the low carb diet and I would always recommend this to people. I am back on it at the moment. It doesn't have to be weird or severe. Try Michael Mosleys clever guts diet book. This also covers cholesterol. There is also a thing now about fasting for 14 hours overnight.
Have you been taking pred in large dollops of yogurt in a big meal like bowl of muesli? Most people find this protects the stomach. Also there's coated pred which you have to ask for. Anyway don't get stuck on the stomach protection meds for too long, I woud suggest.
yes I take prednisolone with yoghurt when I’ve had my main meal of the day. Could you tell me more about your low carb diet & what you eat throughout the day. Reducing the steroids hasn’t helped me as gone from 50 to 25 Mrs & now got the diabetes & high cholesterol
Wouldn't help cause I'm veggie. Much easier if you're not. My GP surgery sent me a diet sheet when I went into prediabetic, and people I know who are diabetic have been given diet info by GP. Going down to 20 wouldn't help - for me it was around 7 the first time, even lower the second.
As I’m down to low levels of Pred., (2.5mg for the past 3 months, now 2mg) I’ve been a bit careless with my intake of carbs. Having recently changed GP surgeries a full range of blood analysis was carried out, revealing my HbA1C to be 41.
I need to be more careful, even small doses of Pred can lead to problems.
I add my personal experience here, as others may be tempted to resume a ‘normal’ diet when on low doses of Pred.
did you not get diabetes when on high dose of steroids or raised cholesterol levels
2 years 11 months now on Pred, starting at 15mg (so much for getting off in a year!). At the higher doses I watched the carbs very closely. This thread has been a reminder to me!
Edit
Adding a response to your Q about cholesterol: Following stenosis of the LDA, and stenting as a result, I’m on daily Atorvastatin 20mg.
Well this thread has been very interesting! I have GCA/PMR & am now down to 2mg from the initial 60. The last 2 blood tests I’ve had done at my new surgery have thrown up slightly raised cholesterol levels…7/8. So am I right in thinking this could be due to the Prednisolone?? I eat a healthy diet with very little fat (only olive oil & a tiny bit of butter occasionally as a treat), fairly low carb, no processed meats etc…plenty of lean protein & veg. It would be nice to know the cause!
the medics say Prednisolone has caused my cholesterol to rise & given me diabetes
Thanks, that’s very interesting!
I take 20mg omeprazole per day even though I have gastro-resistant preds as other medication is also a bit fierce on the stomach. Gastro-resistant preds are coated to avoid irritating the stomach lining.
As others have said...This is a very interesting thread. I am 72. I was diagnosed with Large vessel vasculitis (probably GCA) in 2014, and was started on 60mg prednisolone, tapering graduallt according to blood results not by "feelings" or charts . I was able to stop pred after 2 1/2 years but still ask for a CRP as well as HbA1C at least annually. After starting pred, I developed diabetes but immediately started a virtually no-carb diet, and over a year I got the HbA1C down to 39. Recently, I have relaxed the diet but the pre-diabetes is getting worse again. I also take risedronate for osteoporosis and occasional ibuprofen for arthritis and was advised to go back on omeprazole which I have done with no problems. GP also advises atorvastatin but so far I have resisted saying i will try to control the diet first. What we have to remember is the risks are just that ,,,risks... you may or may not get problems from diabetes, high choleterol etc, but the risks of a bleed get more as you get older even without the other things. Its up to you if you want to avoid risk at all costs. I find it a balancing act as you get older!! Good luck!
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