I hate prednisolone ☹

[PSAWarrior28]

Hope everyone is as well as can be during this warm weather in the UK

Scleritis was diagnosed August 2020. I never imagined 2 years later I would still be fighting this battle . I started off on methotrexate, hydroxcloriquine and had 60mg of prednisolone added to the mix. After having sulfasalazine added 6 weeks ago and tapered to 12.5.

Today went for monthly check and I have fluid build up behind my eye . My ophthalmologist seemed very worried and has increased my prednisolone to 60mg for week with any appointment to.see her next week.

Has anyone had fluid build up? How was it treated? Did you experience pain? How did it get resolved?

[Vixen2]

Hi PSAWarrior28. You have got a lot of crap to deal with. I don’t come on here much. But when i read an account like yours. I feel i need to reply. One of my drs said. The body loves steroids. It’s fantastic what they can do. They can save lives. But bloody hell they can make you feel shit. (That last quote was mine!) I’ve had arthritis since i was 21. (I’m 51 now). I also have Iritis (inflammation behind the eye) & glaucoma. (Excessive fluid build up, which puts pressure on the eye). I’ve had lots of steroid injections in the eyes. (Had one last week). Often on loads of steroid drops. After the last injection. I had to go on 2 steroid eye drops every hr for a whole week. Plus for 2 of the days, i had to put drops in every hr for 2 whole days & 2 whole nights. So i had to stay up 2 whole nights doing this. Very boring & so tiring! I had to have another injection in my eye a few yrs ago. I wasn’t in the mood for a needle in my eye! So i asked for steroid tablets. Was on them for months. At first i loved them. They gave me so much energy. I was cleaning non stop. My flat looked spotless. I polished anything that moved. (Even my partner!!!) Then i started to see fluid building up in my neck. (They call it moon faced) My eyes were becoming bulbous. But the skin on my face looked great. It stretched. Looked so smooth. My mood changed alot. I became more agressive. I felt horrible. Couldn’t wait to come off them. So i understand how you feel.

All i can say. Is. Try & be patient with yourself. Be kind to yourself. I always say the same thing. Get a big bowl of soup, lovely buttered bread & put a comedy on. For me. Comedy is a lifesaver. I’ve recently been diagnosed with bursitis in my left shoulder. Which is a narrowing of one of the muscles. Total agony. On Codeine for it. Had to go to a&e the other day. Was in there 7 hrs. Just awful. So i know all about health crap!! This is where my therapy is comedy. I put my tablet on in bed & it eases my pain. Or i love to sing too. I take my tablet into my bathroom (great echo!) & sing my heart out. It’s great if i’m feeling emotional. It cheers me up. (My neighbours enjoy my voice too!) Good luck with everything. X

[marie66 in reply to Vixen2]

Hi, last time I had moon face too. I’m currently on them again so I’m watching what I eat and keeping an eye on the scales as last time I put on 12kilos(2stone!). My whole face looked like a balloon and my moods were all over the place. Steroids do help but they come at a price. I hope you things settle for you. M x

[Vixen2 in reply to marie66]

Hi Marie. I know how you feel. They can be a lifesaver. My lovley late mum had asthma & COPD. So she was on steroid inhalers full time. But she never moaned. She was great. When i’m feeling crap. I have to moan. To let it all out. (Mostly to my gorgeous little Syrian hamster. (Eric). He doesn’t care if i’m a moody cow! As long as i feed him & let him run around my flat for his nightly exercise!!! Sometimes i put my headphones on & if i’m not in much pain & just feel spontaneous. I might dance. (Remembering not to tread on my lovely Eric!) Living alone has it’s benefits. I might not be able to sleep. So i might get up in the night & have a midnight snack. Put my fantastic tablet on & just take my mind off my health crap. Good luck with your ‘stuff’ Marie. X

[PSAWarrior28 in reply to Vixen2]

Thank you so much for your reply. Its definitely lifted my mood ☺ I've been on this roller coaster for over 2 years. I never imagined that I would still be fighting this battle in addition to my other health issues.

I guess my go to is either listening to my fav music or watching TV - anything that I can get immersed in and not think about me and what's going on healthwise. I used to love dancing but with all the musculoskeletal issues I'm experiencing, that's on the back burner - at the moment.

I've also recently found out that my ingrowing toenails need to be removed. They've been infected and had to have antibiotics but because I'm on methotrexate, its taken alot longer to heal.

Once again thank you 🙏

[Vixen2 in reply to PSAWarrior28]

Hey PSAWarrior. You’re not alone. Steroids can really take over your mood. This forum’s great. You can come on here & moan all you want. We all understand on here. Unless you deal with chronic pain. You have no idea what it’s like. But ‘talking’ about it can really help. (Plus the odd chunk of cake & glass of wine can help too!!!) Good luck with everything. Glad i cheered you up! X

[Deeb1764 in reply to PSAWarrior28]

It is a tough journey and hopefully things will suddenly pan out and become a smoother ride. I would not say 3years down the line smooth but maybe more in tune with the body and I work with the pred to benefit me but not over do it. I go from 5-30mg a lot due to breathing issues. All I can say is don't have any naughty food in the house. If you need pick food make sure you have bags of carrots and celery in ( I learnt at my cost carbs were not the way forward). Lesson learnt on high dose sessions!

Big hugs D

[Hidden in reply to Vixen2]

What a heartfelt post. Good luck to you as well Vixen2

[Vixen2 in reply to Hidden]

Thanks alot Bluewalker. Good luck to you too! X

[Runrig01]

Sorry you are struggling so much. I’m on life long steroids having developed severe adrenal insufficiency, after taking steroids for polymyalgia. Steroids are the only treatment for polymyalgia unfortunately. I was diagnosed with adrenal insufficiency after suffering a severe stroke at 52, which was found to be due to an adrenal crisis. It’s difficult with prednisolone as one of the side effects is fluid retention. I have a maintenance dose of 4mg, but I have to think for my adrenals, and respond to stress by updosing, or occasionally using my emergency intramuscular injection. That could be an infection or virus, or simply someone startling me, even the hot weather can trigger symptoms. I get nauseous, lightheaded and develop a headache, my BP drops and I start to slur my words and can lose consciousness. I find when I take extra to deal with these symptoms that I generally end up with swollen ankles and the moon face, which I hate. It makes losing weight so challenging, I can lose 7lbs then have to double my dose for infection, and literally overnight gain 4-5lbs.

I hope your eye settles down with the higher dose, and that your able to wean off the devils poison. 🤗

[PSAWarrior28 in reply to Runrig01]

Thank you 🤗

I've been reading up on adrenal crisis and ensure my daughter understands it as well. I guess I felt I was on the home stretch at 12.5mg and to have it increased to 60mg when I was looking forward reducing further.

Like you I retain alot of water. I really hate carrying around all this extra weight despite doing aqua aerobics 5 times a week and watching what I'm eating.

The other problem I've seen is the constant need to urinate....assuming this is a side effect of the devil's tic tac 🥺..

Onwards and upwards...Once again thank you for sharing.

[sunnyweek]

As a result of uveitis I have fluid build up behind one eye. Also had episcleritis. I have an eye scan approx yearly, should be six monthly but the clinic are behind. In the past, depending if the fluid has increased they have injected powder to the back of the eye to 'mop' it up. It comes back over several weeks though. I've had 60mg steroid in the past several times to help. As long as the scan stays stable (currently) they leave me til the next appointment. They keep a check on it, but the fluid has never yet fully gone, 16 years on, but I'm still hopeful. No pain though.

[Angels54]

Hi , I have been told I have Sjorgen’s wish affect eyes , so blurr now on eye drops for ever 👍