Would any of you be willing to share your experience of prednisone please.
I’ve today completed my 1st 3 week course of 15/10/5mg day . I had high hopes that I would see a significant reduction in inflammation, feel a bit more energised and generally more like me. I have not....
The first week on 15mg I felt no different at all. The final day I felt a little better but think it must just have been a random good day. Since then, and whilst on the reducing doses I’ve felt rubbish. More tired, more inflammation, unable to sleep and constipated! Seems like all of the side effects and none of the benefits.
Today - I feel great , still have inflammation but more energy, but I’m worried what tomorrow and the next few days might bring without any prednisone. Or have I understood this wrong and you see the benefits after completing the course and not during?
Thank everyone
S
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SashaT64
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Hello, only ever been on steroids once and that was prior to SLE diagnosis. It was whilst battling pnuemonia and pluerisy last March and April. Not going to lie, I hated them. I was on 6 per day (in one go) for a week and I was wired. I was awake, evn with how ill I was was, unable to sleep, very wierd, very vivid dreams and apparently talking in my sleep, too. After a few weeks face was a lot rounder - and I lost a lot of weight. Didn't notice an increase in appetite, which I could've done with as I went down to 58kg (normally 63-66kg). It did hepl with my breathing though, although every breath was agony - and I don't use that term lightly!
Apparently, I was on a high dose (same ones you mention), but I have vowed to never go on them again. A lot of people have good experience and it helps whatever it is supposed to help with. Everyone's experience is different and I was on them not for anything SLE related.
I would suggest taking them as early in the day as possible so they don't keep you awake at night. Always best contacting the dr to discuss it, I'm assuming they'll want to discuss how you ahve got on after this three week course?
Thanks Ceri- yes took them with breakfast in the morning. I will catch up with rheumy nurse next and see what happens next. I guess I was disappointed- was expecting to see more of a benefit to compensate for the downsides.... Take care S
Hi SashaT64, to help with not being able to sleep, Ceri’s advice of taking them earlier in the day is a good suggestion. Have a daily walk outside in the fresh air and sunshine and if you can tolerate it, some moderate exercise. Cut out caffeinated drinks or at least don’t consume them after midday, this will help also. Drink as much water as you can throughout the day, at least 2 litres, I find being on steroids causes constipation and keeping hydrated will help with that. There are some great upsides to steroids but a whole load of downsides - it’s finding the tips and tricks that work for you. Hope these help xx
Hi Sasha, I have been on low dose prednisone for several years. Mainly because I have anaphylaxis to aspirins and all NSAIDS. It does keep the inflammation away. When I go on vacation my Rheumatologist increases the dose 15 for 10 days /20 for 10 days then back to 5 daily. I feel great when I’m on the 15, and the 10 but when I taper back to 5 the horrible fatigue sets in and lasts a couple of weeks. I don’t know if you are feeling the same way because of the taper. I hope you feel better soon. I don’t know if this info is helpful or not. Anyway you take good care. X Nan
Thank Nan - yes I felt rubbish for the 2 weeks on the taper , but didn’t see any benefit of the week of high dose . I’ll see how things pan out for the next week without them them contact the rheumy nurse again.
Hi I call prednisalone my wonder drug. Have aps lupus and inflammatory disease. Twice a year I go on it for pain but I’m blitzed 30mg for 7 days then gradually lowered to 25/20/15 etc. Takes around 6 weeks but by the third week swelling virtually gone pain much lesser and I can feed myself
You may need to start higher. Ask your Drs. The higher dose does have effects I’m hyped up, can be argumentative but boy I can get so much done over the 6 week period
Has not a good effect for those on warfarin for the aps but have blood tests twice a week while on the steroids
I’ve never taken the oral steroids, but have had drop-injections, which have had miraculous results for me, lasting anywhere from several weeks to several months. I’ve heard lots of awful stories about prednisone tablets, so I guess you’re not alone.
I’m currently having a flare, but doc has advised against any form of steroid, as it could make recovery from covid more complicated.
Hi Jayne - yes they were very cautious about prescribing it. Was about to start at the beginning of the lockdown but then they said no - it was too risky. But then said yes because I’m shielding and symptoms are bad. Hope you feel better too x
Yes def have to take them in the morning as they will keep you awake due to ur circadian rhythm.
I should think over the 3 wks you would have started to feel a bit different a bit better but everyone is different some people dont react to them well and I've known people to have no benefit at all.
I've been on steroids for over 10 yrs now and I often have to increase them despite being on immunosuppressants, when I increase them.i do feel a benefit in my joints which is what I've increased them for.
I personally hate being on them but the rheum says that he doesn't think I'll ever get off them I take 5mgs daily usually and when bad have to go up to 20 or 30 a day then taper down.
Just see you may feel a benefit just after stopping them, some people do x
Thanks Sara - I’m always the awkward one who responds differently so maybe this is the case for me and prednisone..... good to know I’m not the only one that seems to have had no benefit! Glad they work for you to ease your symptoms when you need it. Stay safe x
I've been on steroids for 6 years and honestly, I'm surprised you haven't seen any effects. I am on maintenance doses daily as my adrenal glands have now failed, but I will write below my experience when on therapeutic dosages.
Higher dosages didn't change my energy levels but they do reduce my inflammation. I'm unsure what you mean when you say inflammation. Do you have physical swelling etc, or is it pain / stiffness levels? While I wouldn't expect a drastic change, I would expect the steroids to dampen your inflammatory response and you to feel markedly better after a few days.
When steroids don't work the doctor will often reassess what the root cause of the symptoms are.
It might be of interest to see what your bloods say and whether there has been a difference there. I have had what we call 'baby flares' in the past where my bloods aren't massively elevated but I feel utterly terrible. Pain, fatigue and rash are all up. These are helped more by rest and anti inflammatory medications for the symptoms. They usually pass in a couple of weeks and I'm back to 'my normal'.
In comparison when I have a medical flare, my bloods jump up and my lupus is obviously very active. I get lots of symptoms and steroids have been like a wonder drug. Within a few days the symptoms are vastly reduced and my bloods have come back down.
If your bloods are still high or there is visible inflammation then it might be that they give you a much higher dose for a very short period of time to dampen it. This is what happened to me. I was put on high dose steroids while they waited for my immunosuppressant medication to 'kick in', and then they slowly tapered my steroid dose. I should say that I had kidney involvement so keeping my lupus under control was essential. My lupus is now well managed predominantly by mychophenolate mofetil but with maintenance prednisolone.
Long term steroids can be extremely dangerous and have very severe side effects (as I have experienced first hand), but in the short term they literally can save lives.
Thanks you for you reply that’s really helpful. I have swelling and pain in my hands- mostly my left hand but also to lesser extent on tight. The knuckle joints hurt and have limited movement and also swelling over back of hand and pins and needles . Similar in right foot and less on left!
I have low WBC and platelet counts and low complement levels. I had a blood test on 19/3 and on basis of that alone was told to shield - neutrophil count of 0.7 and overall WBC of 2.8. Since then I’ve been taking supplements to up by B12 in particular to see if that helped. Haematologist wondered if was temporary blip but said was too risky to repeat test at that time.
Started steroids on 26/4 on 3 weeks course. Blood test on 19/5 have neutrophil of 1.88 and WBC 4.5.
Inflammation and pain levels are the same - pre and post steroids. Can see no physical benefit. But the bloods - steroids? Supplements? Or earlier test was a blip? Due to ‘see’ haematologist at end of June - so will see what bloods say then.
I guess I’ve got to learn to be more patient will all this - but it’s hard.
It's definitely worth discussing that with your haematologist. However, those blood results are not the ones that indicate your inflammation levels and lupus activity. When did you last have your lupus bloods done? I know things are delayed during the pandemic but if you have visible swelling then it's definitely worth asking for them. That way you can see if there has been any reduction.
It's definitely hard to play the waiting game, but if the inflammation levels are still up then they might easily try you on a higher steroid dose temporarily, or a steroid infection.
Hopefully you get to the bottom of this soon and start to feel a bit better x
Hi Sasha. I initially was placed on 60 mg of prednisone after a pop of IV solumedrol 125 mg. I felt amazing almost immediately. Most if not all my symptoms went away. Once I dropped to 20 mg on my taper, I struggled. I was finally able to get off after 6 mos.
Sometimes when I’m feeling really bad and my lymph nodes swell, high CK, pleuritis my doctor will prescribed a medrol dose pak which is a quick steroid taper over 6 days. With this, I do not notice an immediate effect. It takes about a week for my nodes to go down and then I know it’s working.
Steroids are a double edged sword. They make you feel good but sometimes the side effects make me hate it - swelling, moon face, weight gain.
I hope you feel better soon. Sending hugs your way. ❤️
That’s interesting that you had a delayed effect with the medrol dose pak. . I took my last dose on Monday this week week. Have had a headache most of the week but otherwise feel much as I did before I started. There may have been an effect on my blood though - see above.
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