Predisolone help please

Dear All,

Having a bit of a teary day, which is ridiculous considering some of the horrible things that many people on this site are going through. I don't even have a confirmed lupus diagnosis (I don't think) at the moment. One rheumy said sjorgrens, my gp says mixed connective tissue disease and my current rheumy says lupus and sjorgrens. Anyway, I am also hypothyroid (hashis), and the combination of whatever it all is, and I suspect, not getting my thyroid meds right, is making me feel horrid and unbelievably tired.

I don't eat very much and am very aware of putting on weight....I've put on quite a bit over the last year. Anyway, last week my rheumy said that I should take predisolone (25) for 8 weeks, and then some other steroid for a while on top of the hydroxy because I have a fibrosis in my lung?? I got the medicine, came home....and read the side effects! They sound horrible! I wonder whether anyone with experience can let me know whether they affected your sleep, whether your mood changed, whether you put on weight and anything else. I would love to be as informed as possible before I start taking them.

I'd be very grateful...

16 Replies

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  • Hi. Haven't much experience but I started on these in November on 15mg reducing by 2.5 every 2 weeks. Mine was for long term pleurisy and pericarditis. Initially I suffered from bad insomnia but this has settled recently. Unfortunately the dose didn't have the required effect so I increased to 30 then 40 and am currently on 50. My sleeping has settled but my weight has all shifted to my belly (unfortunately as the only positive with lupus was I had lost a load of weight and had a flat stomach for the first time in 20 years) I was very dubious to start them but they have done their job and my inflammation levels are well down. I still suffer pain but this is probably due to scarring now so will have to live with it. I understand your fears but for me the side effects were outweighed by the benefit I receive from them. Not sure this helps but is my experience

  • It helps massively. Thank you. Sleeping is a big issue isn't it? However much pain there is, it feels worse without sleep. I am relatively new to this, so seem to be taking pills all day long....and that helps with the pain....is there nothing that they can give you to give you some relief?

    Anyway, thank you so much for replying and telling me about your experience. I really appreciate it. I'm going to start them tomorrow and try not to think about anything other than feeling better.

    x

  • They can do all of those things. But there are over 80 listed side effects of pred - no-one gets them all, some people get none or very few. If you read the side effects on any medication - including ibuprofen and paracetamol - you wouldn't take any of them.

    Pred is a drug that terrifies many patients (and doctors) - but it has been around since the early 1950s and an awful lot is known about it. They are the best drugs - the new stuff is often an absolute unknown and you have no idea what you are letting yourself in for. With pred they know pretty much all there is to need to know.

    If you need it, you need it, and your doctor wouldn't have suggested it without good reason. Yes you may put on some weight - but some patients lose weight when on it. Cutting processed carbs drastically seems to help with weight gain and some of the other side effects. Some of the side effects take more than 8 weeks to appear and everyone is different. I've been on pred continuously for over 6 years - the first version I didn't put on weight, it just rearranged itself! Then one sort I put on loads of weight and it was horrible, with the third version all that reversed and I have lost about 17kg since then. But all the time the one thing I knew was that I felt better taking pred than not taking pred. For me it is the only currently available drug that manages the symptoms of my autoimmune lurgy. I've just had to go back from 5mg/day to 15mg because of a flare. I felt disgusting - now I feel human again. That's enough for me.

  • Thank you so much for replying. I was feeling very alone today, really ill...and frightened. Tomorrow is a new day and I am going to start them in the morning. I have always been healthy, and this has (as for everyone living with it) turned my world upside down. I have 2 gorgeous boys who are both at boarding school...weird choice....amazing school....and they love it. They are coming home on Friday for 10 days and I just want to be as well as I can to look after them and to be the mummy that they are used to.

    I really hope that you keep feeling better. You are very kind to be dealing with this yourself and yet bothering to send helpful information to other people who are struggling. Thank you.

  • I've had it for at least 11 years, I'm used to it, the medication and the flares. As I said to someone earlier on - I can still sit in front of a computer and distract myself! What I can't do this week is go for a walk where there is an incline involved! Flat is OK, even the hill into the village was OK today - because of pred!

    You may find you feel strange, you may struggle to sleep -but don't WORRY about it, that just makes it worse. Accept it as it comes and enjoy the boys while they are home. So you put on a bit of weight? The boys won't care as long as you are still the mum they know and love. They probably won't notice a pound or three more! It will almost certainly go away when you stop the pred - it's only 2 months.

  • If I was computer literate, I'd send you a big kiss moji (like I have on my phone)...but I'm not good enough on my computer to work that out. Thank you!

    I'm so glad you felt well enough to walk into the village today..being outside in the wild wind that is going on here today just pulls some of the cobwebs out. I know that I am being selfish when I complain...I can walk my dog most days, so I need to appreciate the good and stop moaning. Please look after you...and thank you for having the time to help me. x

  • No wild weather here - it might have been nicer if there had been some wind! We had the left-overs of the snow from the weekend - badly needed for the ski resort - but down here it was foggy cloud and damp. There'll be more snow tomorrow night - maybe, I'll believe it when I see it. We've had as bizarre a winter here as you have in the UK - just not wet, far too dry. Until now when the snow really is a bit on the late side!

    Always look for the positives - it isn't easy when you have been fit and healthy all your life to adjust to limitations. But underneath we are still the same person - even if you have to push a bit of flab to one side to find yourself :-)

  • Where are you? It sounds like you are in the US?

  • No - very firmly in Europe! I'm one of those awful people: a migrant! Except normally better known as an ex-pat and the other way round to what most Brits think of ;-)

    I lived in the UK until we retired and moved to northern Italy half way up a mountain. Happy as larry and the weather is far better!

  • How gorgeous! What a lovely place to live. So funny, as I have been meaning to book a skiing holiday for Easter for weeks now, but keep shying away from it as my feet don't feel very well...and don't like ski boots at the best of times. We always go to Austria at Easter and last night my husband asked me to look at the possibility of somewhere quite high in Italy. I imagine that you live in a world of delicious food, good air and wonderful scenery. x

  • Careful if you aren't well. Skiing is very hard work and if your legs and feet aren't happy it may not be a good idea. I've reluctantly decided to retire from the piste - bit of a pain as our flat was originally bought so we could :-( Ah well, such is life with autoimmune disorders.

    Further west there has just been a lot more snow but it isn't particularly cold - it has been a very strange winter with next to no snow until after Christmas and really quite warm so they had difficulty making any either. Now the avalanche risk is high - off piste is really dangerous.

  • I managed to lose weight on pred. Portion size that's all. But Drs weren't keen on me staying on for long. The main thing was that it increased my blood sugar levels. Hope you're ok

  • I have taken prednisone at various doses and at the moment I am also having regular intramuscular injections.

    I also have a weight problem for the last few years.

    I did boycott steroids for about a year, and put up with much worse pain and inflammation.

    Ultimately it's your body, you decide, I have decided to take it so that my pain is more under control and I am more mobile because being less mobile also makes me put on weight.

    Good luck what ever you decide luck. 🍀

  • Hello!

    Yes, the side effects sound horrible but every person is different and if you take care during the time you're taking it it isn't as bad as it sounds.

    I've had Lupus for 14 years and I've taken Prednisone/Prednisolone three times in three main big flares. It saved my life. The first time I took it for 4 years. The second time for 2 years and currently it's been already almost a year,

    All of them have been similar for me. I gain and lose weight, but if I keep a diet low salt, sweets, fats, and full of steamed veggies and fish, and water my weight is almost not affected. My blood pressure has never been affected. But I've always got the rounded face when I'm taking it. And after stopping it I have to wait about 6 months to get my not rounded face back :)

    All the time has changed my mood. I'm more grumpy and depressed. The 1st time was very difficult because I didn't know it was because of this, but this time I'm more relaxed and able to manage it. Lot of comedy films :) every day

    I keep away from people coughing, with a cold, a flu. It's very easy to get it when you taking Prednisone. I tell my family and friends that I don't want to be rude but that I really need to get cured and well, so don't visit me if you are with a cough :P

    My skin gets very dry and there's no cream that works this but I don't mind that much as at least I have no joint pain. As I said, Prednisone saved my life, stopped my flare.

    What has been a little bit difficult this time, and that didn't happen before was the change on the dose. I've been feeling very dizzy, with headaches and nauseas every time it goes down. But it's lasting just one week and then gone.

    So, keep positive thoughts, follow your docs instructions, keep a good healthy diet, lot of water and everything will be fine. Blessings, :)

  • Sorry to hear you have pulmonary fibrosis along with other symptoms. I also have pulmonary fibrosis, I was diagnosed with it in 2007 after years of breathlessness.

    I also take prednisone but I take it in the mornings and the coated tablets so it doesn't cause stomach issues. I do have times when I am wide awake all night and periods when I can't keep awake so not sure if it's anything to do with the steroid. My weight is always fluctuating because I do have craving for the wrong food. It also causes the fat in your wrist and ankles to go to your belly.

  • I have been on prednisolone since 2002. I can say it saved my life. I have taken doses up to 60mg but am.not on 5mg a day. I usually double or triple the dose when I am having a flare up.. (thru Rheumy advice). I also have fibromyalgia, celiac and urticaria vasculitis. At first I lost weight, then I gained a lot of weight, mostly on my arms, my back... Between the shoulders and thighs. I have since managed toasted some Wight off and am happy the way I am coz it made me much better. The benefit I got from prednisolone outweighs the side effects,. I have episodes often sleep... Which could be days to weeks at time but due to chronic fatigue, I sometimes manage to.sleep for 3 to 4 hours. The effects are different from person to person, especially if we know that some of these effects could be caused by lupus itself!! You have to decide with better health in mind if you want to take prednisolone, or any other medication. Take care and remember you are not alone.

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