Hello all, its been sometime since I put something on here. I have had RA for about 15 years and after being diagnosed, methotrexate kept it under control for about 4 years. Then Humira for a further 6/7 years which was a life saver. I had a knee replacement in 2021, complete success but when I went back on to the humira after the surgery, it wasn't quite so good. Second knee replacement in Oct 2022, and again when I returned to humira it felt even less effective. Ended up going on steroids before Christmas, consultant upped my humira to weekly instead of fortnightly doses. Came off steroids last Wednesday, on Friday night, I had such a major flare that i could not move at all, continued til I got a prescription for 10mg steroids on Saturday morning. By Saturday night I could with help move from bed to wheel chair and by yesterday could walk with one crutch. Today I feel more pain - ankle swollen and painful as are shoulders and elbows. I am on 10mg for another week before reducing do you think i should ask for a higher dose or am i being impatient and not resting enough.
Major Flare: Hello all, its been sometime since I put... - NRAS
Major Flare
just sending best wishes as awful getting a flare especially when in recovery mode as well. 😘
You are not being impatient. My guess is you need a new drug, so entirely appropriate to need higher doses of steroid in the short term. Contact you medical team and PUSH!
Yes i think so too, gp put me on 20mg before christmas which consultant said was far too high - she hates steroids. But she decreased by dose to 7.5 then nothing which I think is why i flared so badly, usually it would go down at least to 2.5mg. I will attempt to get through again.
I was going to say the same thing about needing a new drug. The humira is clearly not effective enough anymore. As helix says push to be changed to something else. I also agree with your consultant on steroids - they’re evil 👿 They make you feel better but the side effects can be awful too.
I agree completely re steroids. I was prescribed them for polymyalgia and GCA, for which steroids are the only treatment. I developed life threatening adrenal insufficiency from using the steroids. They caused my adrenal glands to atrophy, and stop producing cortisol. I had a severe stroke at 52, which was found to be due to an adrenal crisis. I now have to take steroids for life, deal with low cortisol symptoms, which I get with any stress, good or bad that I’m exposed too. Family & myself have been trained to use an emergency intramuscular steroid injection, to use when vomiting, injured or ill. I wouldn’t wish it on anyone. Had to use injection on Tuesday when having a filling brought on symptoms, despite taking more orally. Also have to inject whenever I get a migraine as I vomit 8-12 times, If there is another choice I would always opt for that instead of steroids
Agree with this...family members with PMR/GCA have experienced the similar. I am avoiding long term use even if I know I could be feeling better for now. I have however, experienced good effects from occasional 4 week courses from 20 mg decreasing in 5mg weekly amounts. I think that the benefit goes beyond the duration of course. It's especially helpful when going through times when I need as much stamina as possible. 20 mg is noticeably more effective than 10 mg.
adrenal insufficiency can occur in anyone taking steroids for longer than 3 weeks, which is why there is the need to taper, and gently nudge the adrenals awake again. I know of several people with AI from just 4 weeks of prednisolone for chest issues. Thankfully they don’t have atrophy yet, and their endocrinologists are optimistic it will recover. However in the meantime they need to carry the emergency injection, and follow sick day rules to stay safe. Generally you will know, as you will start to feel nauseous all the time, get lightheaded, sometimes headaches as well, and usually your BP will start to drop. If you get these symptoms pause tapering and speak to a gp.
I agree they are great for making you feel energised and less pain and stiffness. However T hey are known as the devils tic-tacs for a reason. Take care. I’m not trying to put you off them, just want to ensure you know what to look for. I had all the classic symptoms leading up to my stroke, but my GP kept insisting it was an ENT issue. The endocrinologist said it should have been one of the first things to consider given I’d been on steroids 6yrs. GPS are good at warning patients about the risk of diabetes, osteoporosis and weight gain with steroids, yet most make no mention of the risk of adrenals shutting down 🤗
agree they are evil, but as a stop-gap to allow one to function they are irreplaceable.
hi
I had a really severe flare in the summer and managed to tell my GP just how bad things were and he put me on 30mg prednisone which within 48 hours had me back at work etc
Obviously the dose was reduced over a 6 week period but it really made a massive difference
One downside was my blood sugar rocketed up but once tapered down from steroids reverted back to normal
Hope you get sorted bad flares are very debilitating
Good luck
You know I would love 30mg, I think that would sort it out, but Gp follows consultants instructions and she keeps it low. Glad to hear you are better now.
ouch! I’ve had some ‘everywhere’ flares over the last months. Its scary how quickly it can happen and change your life. My rheum dept are very good - changed my meds and I had depo steroid in jection to tide me over. They don’t like using oral steroids.
Hope your flares soon settle
I don’t think you are being impatient.
This disease is cruel and horrible so really praying you feel better soon.
Definitely sounds like time for a new biologic, but you need something to tide you over in the meantime. Does your consultant have the same dim view of steroid injections, as many find them very useful in the period between treatments? Hope things improve for you as soon as possible. 🤗
Sounds as if your medication needs changing! You will have to politely and persistently tell them this!
thank you all. Loads of great information there. I am now on a 4 week steroid dose starting at 20mg from tomorrow, sliding down to 7.5mg per week and staying on that bit worrying reading the posts about adrenal failure - i have been on various doses from before Christmas. Asked about changing biologic - consultant said that it takes 6 months for the humira to leave my system so have to make really sure that it is not working and she is giving it a further 3 months at a higher dose to make sure. Thanks for all the responses much appreciated.
Not what you're looking for?
You may also like...
Advice needed after double hip replacement and major flare up of psa
Flares
Flaring
Flares?
Is this a flare?
What is classed as a flare?
Flare clinic - update, still not wearing flares though 😊
Grief stricken and big flare !
