I know many of you have taken prednisolone long term and have had bad side effects and would like to know how quickly they appeared?
I haven't posted for a while because I am still locked in the seemingly endless cycle of waiting for appointments and pretty crap treatment.
My private rheumatologist was not great, a bit scatty and made inappropriate funny comments and didn't really listen. She does think there is inflammation and advised me to stay on hydroxy but forgot to send the letter to my GP. I had to call her in the end and she claimed they had been sent but she re sent them. she also didn't do any blood tests as she said she would.
During this time I was sent another appointment with NHS consultant which I hadn't requested but I suppose was generated after my call to the patient liaison. It has just been pushed back to first week of August.
In the mean time, I am not taking any DMARDS as I want to be able to start again with rheumatology in August however, I am in agony - another reason I've not been on the forum. Scans at the private hospital did show inflammation and ganglia (synovial cysts) in several joints so it's not my imagination. I was prescribed Prednisolone ages ago and decided not to take it but as Naproxen does very little and been told by migraine specialist no to take it because of rebound headaches I am seriously tempted as I don't know what else to do about the pain which is getting worse and worse.
I have physio whish I practise faithfully every day but it's not doing anything and it hurts. My shoulders, especially my right is on fire and I have limited movement of my whole right arm. Both elbows are bad, right worse and both wrists. Now both groins hurt too, for example in bed lying on my side with legs on top of each other is unbearable. Getting in and out of the car widening legs and them bringing them together makes me shriek with pain.
I'm depressed now. I can't do much any more. Everything exhausts me and for my daughter's sake I want to be able to function. she wants me to take her and her friend to the pictures on Wednesday and I just know that if this pain continues I will struggle.
Does Prednisolone help? Does it work quickly? The box says 20mg per day (4 x 5 mg tablets) do I take all 4 in one go or spread them out?
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Brychni
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All treatments have risks and benefits - we have to weigh them up for ourselves as individuals. I do feel that you you need more medical input than you are getting though. I would be inclined to contact the rheumatologist and say that you cannot wait until August because of the pain. And keep contacting them politely until you get a response.
I have taken prednisolone for 15 years now. I don't have any problems with taking it but usually only take 5mg. I take 10-15mg (as one dose) usually for flares for 7-10 days before reducing back to 5mg. I'm aware that my disease is not controlled by prednisolone (I'm on azathioprine as well) but it does help with keeping me mobile and helps with the pain.
I'm not eligible for biologics unless I'm willing to come off the prednisolone - each of the four times I have done this has been difficult and has resulted in a flare. I was started of the steroids because the Rheumatoid Disease affected my bone marrow - I would rather continue with them than risk that again!
Thank you Old timer. Not sure I would get anywhere asking for my appointment to be brought forward. I find the physios much more understanding and knowledgeful. just waiting for my second appointment with physio which I think will be this week sometime. My current physio called me to see how I was getting on and she has decided to transfer me to her senior colleague who specialises in inflammatory arthritides. I suspect it will result in being re referred again, just like last time.
The GP freely admits he doesn't know anything about rheumatology and just keeps writing prescriptions for painkillers I don't/can't use.
Oh dear I do feel for you. Unfortunately without DMARDS some damage is occurring and even taking Prednisolone won’t stop that. But the Prednisolone will make you feel more comfortable and reduce the inflammation, pain and swelling. I couldn’t have managed without it in the 18 months we were trying to find the right drug to control my RA.If you can just take it short term it could help you through this difficult period until you can get the right medication for your RA.
You may get some sleep issues and feel a bit “wired” but hopefully not the weight gain!
I can’t think that the GP or a physio can help you much and it’s proper Rheumatology care you need. But your GP could ask for your Rheumatology appointment to be brought forward.
You have inflammation, so the only thing that’s going to help your symptoms is dealing with the inflammation. Long term, that means DMARDs to get the underlying autoimmune activity under control, but steroids are the only reliable, short term solution. Some people get some benefit from NSAIDS like naproxen or diclofenac, but there are many for whom they do nothing at all, myself included. There are literally no painkillers that help my arthritis pain, I can still feel it even with drugs like morphine. Steroids won’t halt disease activity, or prevent permanent damage, but they act to reduce the inflammation within your joints, which will reduce the pain, and you will (should) feel much more functional. They also tend to work quite quickly - I’ve seen major improvement in as little as 3 days before, but it can depend on several factors including the length and severity of the flare, a person’s individual response to corticosteroids, in addition to the dose being taken. Just prior to seeing rheum for the first time, when I’d had the ultrasound finally confirming I had some sort of inflammatory arthritis, I couldn’t cut up my own food, and could barely get out of my chair. Within 10 days of starting steroids at 15mg, I was functional again. Still a bit stiff, and a bit achey, but at least able to do the basics that I hadn’t been able to do for weeks upon weeks.
In terms of side effects, everyone is different: I don’t get many at all, but I hate taking them. They just make me feel a bit off and squiff somehow, I can’t explain it any better than that. At doses above 15mg, the main side effect I get is chronic munchies, so I have to keep an eye on that as I was previously morbidly obese. My relationship with food used to be dysfunctional, and steroids definitely have the potential to reboot that if I’m not careful. My daughter takes them quite often for her chest, and they effect her mood quite a bit, along with increasing her appetite, as well as impacting on her sleep, but these are all areas that she already has issues due to having additional needs. Many people do report issues with sleep, so unless you’re told differently by a medic, you should take them very first thing in the morning, after food, and as a single dose. It’s also generally recommended that patients should take a PPI like omeprazole or lansoprazole to help protect the stomach. Taking them first thing reduces the risk and severity of sleep problems for many people.
The bottom line with steroids is that although some people do take them long term, they should always be taken at the lowest dose possible to achieve relief, for the shortest time possible, which is why doctors are often quite quick to try and wean people down and off. There are major risks associated with long term use, and that’s where many of the side effects other than mood, food, and sleep, start to emerge, but long term use is defined as taking them for more than 3 months. As someone that doesn’t like taking them, for me they are an extremely necessary evil that I don’t hesitate to use when I clearly need them. I’d actually give my right arm for some at the moment.
I also had the scan that 'proved' I had inflamamtory arthritis but with additional symptoms appearing during the year I was on hydroxyc. and then the 5 months on MTX, the rheum nurse said that pain in additional joints proved it was not inflammatory.Private consultant said something different again and told me to start the hydroxyc. again but forgot to send my letter to the GP.
Took 10mg Prednisone early this morning with breakfast. Don't sleep well anyway because of the pain. x
Hi Brychni so good to hear from you, I was worried as I hadn't seen an update from you in a while & knew the hassle you'd been having.
I was prescribed prednisolone in March, 20mg for 2 weeks, then 15mg for 2 weeks down to 10mg for 2 weeks. Within 2 days the pain had more or less gone just for a couple of hours & I was so full of energy, by the 3rd day the pain wasn't appearing till 10pm, it was brilliant, however, I only had 8 hours sleep in 72 hours, I was so tired & tearful thought I can't go on like that, I tried taking 15mg instead but within a few hours the pain was back as bad as ever.
I asked on here & had some really good answers, it was suggested that I ask for 1mg tablets so I could reduce the dose to see what worked to get a happy medium, spoke to drs who did this, only thing I found was it took 20mg to ease the pain but, I think ad it'd been around 5 days since I started taking them my body must have adjusted & I slept much better.
As I was only supposed to be on them for 6 weeks I decided to keep to 20mg for 2 weeks then reduce the dose by 1mg every 2 days, but once I'd gone below 10mg the pain was coming back. Spoke to consultant who said to keep taking 10mg for another 12 weeks & hopefully by then the addition of lefluminode will have kicked in, I did have to increase it again to 15mg & am reducing it again by 2mg a week so currently on 11mg,
Only side effect was the initial sleep deprivation which only last 3 - 4 days, I have put on weight which is driving me mad, around a stone but I'm also on gabapentin which also makes you hungry, I try to eat sensibly & healthy but do treat myself now & then.
I'm also on methotrexate, etoricoxib & hydroxy, you can hear me coming as I rattle 🤣
Prednisolone does have long term side effects and rheumy’s do not like you to be on it. I have taken it for years and fir me there is nothing else like it for taking the edge off inflammation. It works. Dry quickly. The box says 20mg so take 4 in the morning. I can’t say how effective it will be for you but for me a life saver. Nowadays I try to take 20mg when I have a flare. I hope that is helpful .
Get the phone number for your NHS rheumatology nurse helpline. You can usually find it online, otherwise call the relevant hospital switchboard and ask for it. Save it for future use. Tell them you're struggling and ask your questions - they should be able to give you specific advice and they're also probably best placed to speak to your rheumatology consultant and possibly bring forward your appointment. Don't suffer in silence and go to the right people for help or unfortunately, you will keep going round in circles. As for steroids, only you can decide whether to take them temporarily but they helped me massively and very quickly. However, you still need a long term plan for coming off them and alternative treatments, otherwise you'll rebound. Also, may be worth asking your GP or rheumatology nurses for a referral to occupational therapy if your struggling with day to day activities (have a Google of how they can help). I'm an occupational therapist, hence why I suggest it if you're struggling with daily activities. However, that's just general advice as someone in this forum, who also has inflammatory arthritis and happens to be an occupational therapist. I can't offer individual advice - you need your local occupational therapists for that who can complete a comprehensive assessment of your needs. Good luck and hope you feel better soon xx
Hi Red_robins - technically I no longer have access to the rheum nurses as I was taken off the list but was re referred and going back in August. Not sure why I was re referred as I hadn't requested it and my GP said it would be difficult getting a second opinion in the same department, so I was surprised to see the appointment come through.My GP is very kind and thorough but admits he's clueless about rheum. matters
If I was in your shoes I would go to the GP, ask them to do a full blood test work up with ESR and CRP and with their guidance start on a relatively high dose of Prednisalone for a month before starting the taper to get you off them before your appointment in August.
Ask for blood tests each month until your Rheumy appointment and take all these results with you when you go in August.
I would ask to be tapering off ready for your rheumatologist to be able to examine your joints.
The use of oral steroids are very useful regards a diagnosis.
The key to this advice is that you MUST do it under GP guidance and not start dosing yourself and more important and crucially a doctor designed taper as you come off.
Good luck.
You need to start again from the beginning. Get some relief and get you on the path to proper treatment.
In my humble opinion going privately when you have a chronic disease isn’t always the best option. What you DO have is an appointment so it’s a step forward.
Hi M - yes, I took the Pred. in desperation and as you say it should be done under guidance, but as I said, desperate. I also agree that going private turned out to be a massive waste of time and money. In some ways she was better but in others much worse. She didn't really listen properly, didn't do the blood tests and was vague about her diagnosis. I read the letters which finally arrived the other day and she even got some things wrong about me saying that I had varicose veins at the age of 12!! That's my now 16 year old son who is under the care of a paediatrician for connective tissue thing. I was so cross during the follow up to my appointment on the phone she said "So what shall we put you down as then? Poly...something or other."
Did she think it's just all a joke?
All the scans did show types of inflammation , synovial cysts, inflammation, pockets of fluid in all the joints scanned. how can there not be any advice about what the hell is causing it? Didn't she think it was strange that this relatively 'normal' inflammation was in ALL of the joints scanned? She gave me no advice about pain relief. I wouldn't go back to her although I have been tempted.
I've followed your advice and made an appointment with different GP on Thursday.
Do you think that the Prednisone will interfere with blood test results?
Hi G, Yes I think the Pred will probably lower your Inflammation levels and this will show as a lower ESR or CRP.
The Pred shouldn’t mask your Antibody tests or RF.
The idea behind it being you get relief from symptoms ( which is an indicator of disease in itself) combined with pain relief.
Then with your GP work out a taper schedule to time in with your rheumy appointment. Essentially you need relief but then to have all your systems flaring in time to have your DAS44 score checked.
All the best to you, so pleased you are going to chat with another GP.
Gosh, no , please , please only follow medical advice from qualified practitioners.I am only giving you the benefit of my experience and what I imagine might happen.
Oral steroids are not to be mucked around with in anyway. Do what your GP advises.
Phone them , ask for a FaceTime or telephone consultation and explain you were desperate and ask what they advise.
Prednisolone worked wonders for me, providing "chemical happiness" when I was at a very low ebb, crying on the phone to the rheumatology answering machine. A doctor in rheumatology had me in double-quick and put me on them. Within a few days I was running a big meeting I had been organising. However, they are serious drugs and I wouldn't recommend taking them without discussing it with your doctor. If you take them for more than a couple of weeks, you should carry a card to show health workers such as dentists when you need treatment from them. Also, you have to be very, very careful when tapering off them. I took them for 8 months and half of that time was getting off the last 5 mg.
I hope you manage to get some relief very quickly. x
I did 10 years without DMARDs so have some experience of what you’re going through. Honestly, I’ve never found oral pred effective. Or steroid shots in the bum. Only joint injections work for me.
There are a few other NSAIDs you could speak to your GP about. Charlie mentioned Diclofenac - I find this much better than Naproxen, which does zilch for me. But some GPs are reluctant to prescribe it. Another NSAID is an older one called Celecoxib - could be worth asking the GP about.
You might also need some kind of painkiller like co-codamol or Tramadol. Again, one for the GP. You could also ask for a referral to the Pain Clinic. This will take a while but could be useful.
Given the impact on your mental health, I would also really encourage that you look into things like mindfulness. I know it sounds like nonsense but it can really help with shutting out the pain. A TENS might also help.
Feel free to message me anytime as I’ve been in your shoes xx
You might find some of the content in this Body Reprogramming guide useful for the mental side of things and trying to lessen the depression of being in pain and exhausted. This is designed for people with fibro, but a lot of it can be applied to RA.
NB: Some of the wording of this guide is not great...a bit patronising...but there are good ideas hidden in there too: bodyreprogramming.org/guide...
There is some good info in this guide as well - also for fibro but again very relevant for RA. The relaxation module with the breathing techniques is decent: fibroguide.med.umich.edu/pa...
Thank you L - I could do with this. For a couple of months now my pains have been constant rather than moving around and coming and going, they are also sometimes extreme and this has also lead to me being really down for the first time ever and I just don't know what to do about it. I did try Naproxen and did give it a good 2 weeks but it didn't do much. also the headache specialist said that any long term painkiller use will trigger rebound headaches, which I had kind of wondered about.The pain is exhausting, I can't get comfortable at night in bed, in the car, walking. It's like a torment.
Hi Brychni - you have some great feedback here. From my perspective :
1 - speak to your rheumy and use the prednisone as an interim to help with your pain, it does work swiftly but we are all different - please know it plasters not cures, symtoms will/may return as you wean off - don't be lulled to think it's cured you off RA. You must speak with your consultant re dose!
2 - have your consultant find the right drugs that can help with joint damage - it maybe a biologic. Only your consultant is skilled to advise not your GP.
3 - do your best to relax and not stress. Eat well, surround yourself with people you love and know you will get better.
I say this as someone who was reluctant to take medication, I became riddled with pain legs, feet, hands and unable to walk! Life has now more or less normalised. ☺️🍀🌞
I am wishing you well as you take the necessary steps to heal.
Hi Brychni, I am taking methlprednilisone(4mg) for my ra pain. I have been waiting on my biologic for a few months now and not seeing any help getting more. I am also on Leflunamide . I find the methlprednilisone a Godsend for my ra pain. I take 1 in the morning and I was taking 1 at night as well. I tapered down just one in the morning and it seems to be doing the trick. I have gained a little weight, maybe 2 lbs but other than that I have not had any side effects. It keeps the pain away and I have more energy. Good luck with your rheumatologist
Hi Bessie - my main problem is that I don't have access to a rheumy at the moment. I have a re referral for first week in August which was postponed from first week in July. I was hoping I could hang on til then but August seems such a long time.. thank you for your kind words. x
If you would like support, information or just someone to talk to, our NRAS helpline is open every week day from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
Prednisilone gets terribly bad press, more so than other meds.For me prednisilone has been my saving grace, my wonder drug, I've been on it for around 2 years. It has given me some sort of life over the past few years when nothing else touched me.
I have no side effects from it, but have have had awful side effects from just about everything else that I have taken.
A short prescribed course will do no harm, if you do have side effects you can stop.
Don't be put off by the bad experiences of others.
Hi MmrrWell, took my first dose of 10 mg yesterday morning and again today and I hate to say it but it's a bit of a miracle. My shoulders and elbows still hurt like hell with certain movements and are still tender to touch in places but the static throbbing pain from inside has reduced, a lot. I went out for my usual 1 1/2 hour walk in the woods yesterday (lots of up hill) and it was like being rocket propelled. I love my walks and used to run ( a short way!) a few times a week but stopped a couple of months ago because my legs feel like lead, but my walks were becoming less enjoyable for the same reason and just not feeling very fit. but yesterday was fab, I felt like running up the hill - I didn't!
I was able to take my daughter and her friend to the pictures and sat in a cafe and wrote for the first time in almost a year.
I wonder what this means with regard to my 'diagnosis'.
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