Need advice on some Prednisolone side effects - PMRGCAuk

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Need advice on some Prednisolone side effects

Rebel21 profile image
38 Replies

Hi all, have developed a number of side effects with my prednisolone and was wondering if any body else has had any. Firstly weight gain, but this is mostly oedema, my legs are swollen my fingers are swollen, tight and painful at times. I have also developed the large hump on the back of my neck the round swollen red face, all the classic symptoms of Cushings syndrome. I have not had my bloods checked for about 8 weeks, and not likely to have them checked in the forseeable future. I was having my blood pressure checked regularly, but again they dont see that as a neccessity in the current climate. I have been told to reduce my steroids anyway by the gp who wants me down to 10mgs within a couple of weeks. I was on 20gs until a week and a half ago, now down to 15mg without any real problems, I wasn't brilliant to start with, but it docent appear to have got any worse. I am more concerned about the probable Cushings syndrome and what damage that could do. Haven't spoke with the GP yet about it as it is very hard to get hold of one who is amenable. Just wondered if any one else has had these side effects and whether they went on their own.

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Rebel21
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38 Replies
PMRpro profile image
PMRproAmbassador

Almost all of us probably - you are not alone!!!

It isn't Cushings really - the symptoms are described as Cushingoid but it is due to the excess corticosteroid due to taking the pred, i.e. the reason is known, it isn't an illness.

Weight gain and fluid retention can often be managed by cutting carbohydrates in your diet, especially processed carbs and simple/added sugar, and also by reducing salt - which is at least partly achieved by removing processed foods. I gained weight with PMR inactivity, it rearranged itself on one form of steroid but when I was switched to another I gained weight rapidly. Then I was switched to prednisone and cut carbs drastically - and over the following 18 months I lost 35lbs in weight and it went first from my midriff and then other typical places.

They will often improve on their own as the dose falls - but not always and it may require some effort on your part. But the sooner you start, the better you will feel as they reduce.

Your own BP machine is not expensive if you are concerned. And lack of blood tests is not the end of the world - symptoms ALWAYS trump blood markers.

in reply to PMRpro

I actually ordered a BP machine for 20pounds this morning online...wasn't happy with the one I have.

in reply to

I also bought a new BP monitor from Boots, £20. My BP is good and never had to take meds for it. Blood sugar still registering 4.2 most mornings, but never higher than 5...so happy with that. However, my weight is slowly increasing. I've never ever reached 10 st. On diagnosis I dropped to 9.5 but this morning back up to usual weight of 9.9. It's the steroids kicking in now, I just cant seem to satisfy my hunger even after a roast dinner. So will have to watch it now. Never been an exercise person, but now thinking about that.

PMRpro profile image
PMRproAmbassador in reply to

Cut the carbs - if that roast dinner was with root veg, roast spuds and Yorkshires there was a mountain of carbohydrate! And when you are on pred, carbs just make you want more ...

in reply to PMRpro

I've cut down on the spuds and increased veg. I've always loved my carbs though so it's hard but never gone over the top...everything in moderation. But then my nutritionist friend would say we'll only have moderately good health then. But once into our 70's we have to have some pleasure, don't we ?? I do eat pretty healthily though and have lots of fish and veg. But cannot and will not give up my choccy !!

in reply to

It's a fine balance and while you are on higher dose. Please try and limit carrots and parsnips which have higher sugar content than green veg, where possible. You have to sacrifice some other carbs to get that chocolate fix! 😊

PMRpro profile image
PMRproAmbassador in reply to

Well you know what they say: a moment on the lips, a lifetime on the hips :)

I found my tastes changed and the things I love now are different - don't miss cake at all. I only ever eat high quality plain chocolate and a single square at a time is enough. Same with icecream - only handmade from one of two gelateria in town and one of those only exists for 2 or 3 months in the summer!

Rebel21 profile image
Rebel21 in reply to PMRpro

Thanks for that, feel a bit more relieved. Didn't want to risk ringing GP for him to tell me to reduce my steroids quicker than he has already told me to do.. As probably gonna relapse anyway which he has told me to expect.

PMRpro profile image
PMRproAmbassador in reply to Rebel21

What a prat - did he never consider he was causing the relapses in all his patients?

in reply to PMRpro

Frightening being in the hands of doctor and some rheumys too that don't seem to know how to diagnose and treat...thank goodness for the experts on this Forum

in reply to Rebel21

So he is into torturing patients😱

Alchemy8 profile image
Alchemy8 in reply to PMRpro

Just picking up this old post on Cushings as I have noticed that in the last 10 days my face has rounded out rather. I have been dropping down from 20mg for about 6 weeks and now on 18mg. Other symptoms include in the last few days a lot of anger (Brexit!!) and emotion and loose stools for the last month. Also wondered whether this could be due to the enteric tabs that I am taking since my last prescription (and mixing with the old non-enteric) which seems to parallel the time I have had the facial symptom. In other words are enteric stronger/weaker/known to different in their impact to the classic pred. I have noted the advice about salt (so I also wondered about Epsom Salt Baths and whether these could be contributory vis-a-vis salt consumption?) and saying goodbye to those root veggies (which didn't seem to have an effect when I was using the other tabs). But then I was lurking down in the 15-10.5 mg department!

Woudl be most grateful for any advice on this.

PMRpro profile image
PMRproAmbassador in reply to Alchemy8

The chubby face on pred isn't immediately Cushingoid - but why it is happening as you reduce I don't know. It could be the enteric coated pred has different fillers and they affect you differently, It is the sodium in salt that causes fluid retention - Epsom salts is magnesium, As Snazzy says just below this reply, sometimess it takes some time for the redistribution of fat to occur and if you were formerly at 10-15 and are now at 20mg that could account for it.

SnazzyD profile image
SnazzyD

Hello, these side effects are very common and can come in a bit after you’ve built up a bit of Pred. They are reversible. The unavoidable one is the redistribution of fat to the middle, face and neck/back and horrifying as it can seem, it isn’t doing you any damage, physically at least. It will go gradually as you reduce the Pred, but don’t be tempted to rush off Pred just to get back to normal.

The weight gain is avoidable and controlled by many, including me, with an ultra low carb diet. One should try hard to control it because the blood glucose spikeS the Pred causes increases the risk of diabetes and the measures to control the weight reduce these. I started on 60mg so my snack attacks were fearsome but I could stuff my face as long as it was protein or veg. Fruit in moderation and berries are best as they are generally lowest in sugars. Fats are fine and actually make you feel sated. But NO pasta, potato, rice, maize, starch, flours, sugar. You get used to it. I did have a weekly treat of 2 small glasses of wine and a couple of squares of 85% cocoa choc. Even though I’m on 0.5mg I still do this out of habit but I do have the odd chip if I fancy one occasionally. Salt is another one to avoid like the plague. Pred causes retention of sodium which then causes fluid retention. If I had any salt eg in a gravy from stock, my eyes would be puffy next day and I’d feel wobbly all over.

Rebel21 profile image
Rebel21 in reply to SnazzyD

Thanks snazzy, I think a lot of the weight gain is due to inactivity, haven't been able to walk far now for a number of weeks due to pain in back and heavy legs. I love my pasta aswell, although don't have a lot of salt and tend to steam every thing so doesn't need salting. I will try to cut my carbs down.

SnazzyD profile image
SnazzyD in reply to Rebel21

The good news is that I was unable to do much exercise at all apart from a walk for months due to the effect high doses had on me. I still didn’t gain weight and my blood sugar HbA1c test readings were normal throughout. So there’s still hope. For me any salt, even hidden in spice mixes, condiments or in sliced meats made a difference. I can’t help with the pasta though 🙂

PMRpro profile image
PMRproAmbassador in reply to Rebel21

My weight loss started while I was on crutches - it isn't an excuse with low carb ;)

in reply to Rebel21

Get through the first couple of weeks and it's easier. You tend to cure your body and then mind of the need for carbs. And I was/am a very carby person too. I loved/love mashed potato sandwiches on white thick uncut bread. I have eaten carb on carb food since childhood as in a low wage family carbs filled you up more. Childhood habits shape our relationship to food don't they

Hi rebel21, I did have the same issues but no leg issues. They have gone just about and gravity has taken over.

A low carb diet really helped as did reducing salt and just ensuring a little more activity. Here is an easy to understand approach.

dietdoctor.com/low-carb

Lindalang profile image
Lindalang

You will get rid of these nasty side effects- now at 3 mg and almost no nasty effects

Grammy80 profile image
Grammy80

Well, Rebel21, you have already received tons of great info from people with lots of experience. The only side effect I share with you is the issues with edema in my legs I'm not even sure it is a side effect..I have been on prednisolone since last September and this issue just started rearing its ugly head about six weeks ago. My Doc feels it is a circulation issue and I tend to agree. What works for me is compression hose..knee-high. If I don't wear them my arches look like balloons..small balloons. 🎈🎈 When I wear them, no swelling and it is almost like my calves are being massaged. I do try to elevate my legs throughout the day.

RECENT BLOODWORK.....my inflammation markers are NORMAL~! I'm so thankful...but for the first time, I have high cholesterol. I've no doubt my diet is responsible..and I'm responsible for my diet. So, I need to make some changes...it was 259.

My very best to everyone...stay safe, this is so challenging mentally and physically...be well.💗💗👩🏿‍🤝‍👩🏿👩🏿‍🤝‍👩🏿‍🤝‍👩🏿‍🤝‍👩🏽‍🤝‍👩🏻👨🏾‍🤝‍👨🏽👨🏿‍🤝‍👨🏿👩🏽‍🤝‍🧑🏿👩🏾‍🤝‍🧑🏻👩🏾‍🤝‍🧑🏼👩🏾‍🤝‍🧑🏾👩🏾‍🤝‍🧑🏾👩🏽‍🤝‍👩🏻👩🏽‍🤝‍👩🏻👩🏼‍🤝‍👩🏻👩🏻‍🤝‍👩🏻👭👩🏻‍🤝‍👩🏻👩🏼‍🤝‍👩🏻👭and from Gus too.😻

PMRpro profile image
PMRproAmbassador in reply to Grammy80

Pred can cause raised cholesterol

Grammy80 profile image
Grammy80 in reply to PMRpro

Wow I didn't know that...

Among other things. I used to be on so darn much and now I'm only taking 6 milligrams. This is the first blood test that's come back with elevated cholesterol so I think I have to blame the butter! I think I have to blame the person that puts the butter on everything oh, that would be me!

in reply to Grammy80

Butter rules....at least it has no e numbers etc.

Grammy80 profile image
Grammy80 in reply to

🐶Poopadoopy, Are you saying butter is good and great and harmless? What are e numbers? I knew I liked you....😽

What about Smart Balance?

in reply to Grammy80

It's yummy and I spent my life avoiding it and eating silly margarines....I still got high cholesterol...not eaten meat or other saturated fats for 30 yrs and still got high cholesterol. So I may as well enjoy life....😉😘

Grammy80 profile image
Grammy80 in reply to

I'm with you...I'm near 80 and it hasn't been a bad trip~! What I would miss most is the cream in my iced coffee.....the ugly American~!🥤

in reply to Grammy80

😂🤣😂

PMRpro profile image
PMRproAmbassador in reply to Grammy80

Margarines - chemical plastic butter substitutes - are less healthy than butter ...

in reply to Grammy80

We have something called benecol that sounds similar. I haven't looked at the contents. It was double the price of other spreads so I didn't try. I was on max dose of statins for 17 or 18 years without success, are porridge etc. It may be helpful when pred is the main contributor but I am a lost cause I think my body just loves to.make it. .... Jinasc has recommended porridge/oatmeal (?) and an orange for breakfast but I can only eat it in the winter. 🤪😉

maria40 profile image
maria40 in reply to

I use the oats as a muesli base in summer, replace milk with fruit juice and top with fruit. Have just got delicious organic oats from local health store which is delivering.

in reply to maria40

I do substitute the oats etc and eat a sugar and salt free muesli with my own added nuts and seeds. I don't like soft fruits with it and i can't eat it everyday. I do like toasted oats and nuts on yoghurt with soft fruit, so will have that. Go figure. Must be the milk. I do seem to have developed IBS with an anti milk clause, but not always.

Grammy80 profile image
Grammy80 in reply to

I used to cook oatmeal...then I was introduced to porridge..with nuts, raisins and apple chunks...yum!

Grammy80 profile image
Grammy80 in reply to

Holy Mackrel!! I just looked at Benecol on the computer...$56.00 for 2 8 oz packages..are they serious? That would be enough to give me 'the big one'...I'd be meeting my maker before I got out of the store~💔

(On LIFE IRL site...madness)

PMRpro profile image
PMRproAmbassador in reply to Grammy80

Doesn't cost that here - honest!

Grammy80 profile image
Grammy80 in reply to PMRpro

Whew~!😉

PMRpro profile image
PMRproAmbassador in reply to Grammy80

Not that I'd buy it at any price!

in reply to Grammy80

😱 not quite that expensive here.

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