Sorry to be here moaning but only you guys will understand!I was having random joints flare up one after the other daily and so I was prescribed some prednisolone (15mg for 5days then tapering down to 0). I was reluctant to take them as I wasn’t feeling too unwell in myself and I like to save steroids for ‘special occasions’ . Anyway, I took them and they helped but now I feel dreadful since I stopped them. I’m so exhausted, got a mild fever (not covid) and even walking across the room is too much. I know it’s the RA as I have felt like it before but because I’m relatively lucky with my RA, I forget how awful the systemic flare ups are! I’ve not seen the rheumatologist for 2.5 years, just a couple of phone conversations. When I spoke to the nurse before the steroids to say I was in pain, she said “your ESR and CRP are quite stable (45 and 30 respectively) so it’s probably not a terrible flare up”🤦🏼♀️. Surely I get to decide that?! Not sure what to do now as the mtx and hdx generally work quite well and I hate trying new drugs. I think, really, I just want some sympathy🤣. I’ve got bipolar too so am feeling sorry for myself!
Can I have a moan please?: Sorry to be here moaning but... - NRAS
Can I have a moan please?
Yes you do get to decide that! You have lots of sympathy from me. Flares are horrible, I was just looking back at some notes I made in 2014 during a bad flare. I’d forgotten what a bad period I went through.
That fatigue you describe and the low-grade fever are soul destroying. It’s hard to believe you’ll ever feel better. Hope you can rest up and take the time you need to recover.
The nurse was wrong. You decide how bad your flare is, not anybody else.
I like the idea of steroids for special occasions! For me these were work trips, when I knew I couldn’t survive without them. Are your occasions work or pleasure related? X
Thank you, that’s exactly the sort of reply I needed🤣❤️. What I meant by special occasions was when pain and fatigue occur together and not even staying in bed will do the trick, however, your message did remind me that I asked for some several years ago before going to a spa-the jacuzzi seemed essential! X
I always remember a scene in the Golden Girls, where the brilliant Bea Arthur, publicly takes out her frustration with the doctor who had previously told her many times there was nothing wrong with her and she was wasting both her and his time. Even his wife tells him to shut up! 😊. I do recognise doctors nurses etc are having and awful time, but that doesn't give them the right to dismiss a patients pain/flares!
Let it all out, being in a flare is really crappy, plus being told by someone who isn't experiencing the flare or possibly hasn't ever that it shouldn't be that bad would set off all kinds of rage 😀
Honestly the highest my CRP has been is 19 which isn't huge but in my body thats high, we are all different and whats high for someone might be low for others.
I really hope you feel a bit better soon, it's easy to forget how bad it can get x
Massive hugs
Thank you x
Like others have said, it is you who gets to say when you are in a flare, despite what your bloods say, although your CRP does seem high.Perhaps a other call to rheumatology is on the horizon.
Any flares are just horrible - especially when you've been reasonably well for a while. Random joints flaring plus fatigue and low grade fever all together is totally crappy. I hear you and I'm with you. Don't even waste time thinking about what the nurse said - they try their best but, like anyone else who doesn't have RA, they really haven't a clue. You'll get through this, be kind to yourself. X
Hugs darling. HAving a flare is no fun and you would expect your rheumy team to be sympathetic to you . Your bloods don't always show if your having a flare. xxxx
Take care- that is awful. I too have often felt like I was being 'managed out the door' I'm in Scotland and I've often had to stay put and argue my case for treatment - it is much harder to do over the phone.
This happened at rheumatology for me and with ear nose and throat. I have psoriatic arthritis and I'm on Imraldi biologic - but the pain is particularly bad in my hands so I also get cortisone injections occasionally. I also have vestibular and hearing problems, with anxiety at times.
It is difficult managing different health conditions. I'm a dreadful people pleaser but strangely assertive when it comes to my health and others (after being a carer for years for my Dad).
I would maybe ring them again to re-state how bad your pain is and that you felt nothing was achieved?
I phoned my rheumatologist secretary after he more or less told me face to face that he couldn't be bothered emailing radiology to switch hands for my cortisone injection! (They wouldn't do both hands. I had waited 3 months through the injection clinic and by the time I was due to get the injection my other hand was worse and I'd asked him to switch hands)
I get a lot of pain between the two hands and had waited so long the pain had subsided in my left hand and that was due to be injected but the right hand was really sore.
The appointment letter came through and specifically said left hand and fortunately I also had a face to face appointment a few weeks before the date with a consultant rheumatologist. When I told him the flare had switched and my right hand was sore even at rest- he just shrugged and said they will probably not do it now as you're down for the left hand...it is up to you... you could maybe give up the appointment or just turn up and see what they say!
Well I thought that was pretty poor and inefficient so I waited a week, rang his secretary and sort of called him out on it and asked again to switch hands saying my left had calmed down but my right was very sore and I couldn't lift things etc- I got a call back saying he had emailed radiography dept to notify them it was my other hand to be injected!
What a palaver!
Sorry this is long winded...just to say I felt I had to really annoy them to get what I needed and got the injection in my right hand!
I felt a bit low as I'd been seen as 'a bit of a nuisance!' Hope you get on ok. xx
I read your esr as quite high. When mine was at 35 I could hardly move at 20 and under I am fine. My CRP was never above 15 in a flare. I hope you feel better soon.
You are not moaning. You are in pain and feeling awful. You are entitled to be unhappy about it. I think we do know our own bodies and you will know when you are having a flare up. I would ring your rheumy again and stress how bad you are and that you would welcome some intervention from her. Good luck.
Nothing wrong with feeling sorry now and again. It's all shite. You do need to accept that just now you are sick. I've been diagnosed 4 1/2 years, I've been on steroids the whole time 20mg at the minute. I've just started my fifth biologic and actually feel like a new person. I understand how sick you can feel when you have a systematic flare, I think you need a longer course of pred and then see if you need to try other things. Good luck and be kind to yourself.
This is the place to moan, bless you. Get it out, I’ve done it a few times on here and the lovely replies always help. Xxxx
Hope your feeling better soon xx it’s so annoying when they say it all
Lols ok from bloods and things and you know your hurting xx this weather sure doesn’t help and Covid ! Maybe call back and speak to them again xxx wishing you luckmx
You are not moaning. You are talking to people who understand. I hope you start to feel better soon. Take care
Sending sympathy and hugs. Heat helps my joints a lot.
Moan away helps to get it out of your system. Flare ups are the mother of all vileness, pain, immobility, fatigue etc etc ,
enough to make you give everything up.
Notice you say your bi-polar so hopefully the flares don'e make you too depressive?
My hubby is bi-polar those meds are pretty strong too, so not surprised you're feeling so fatigued, would seem natural, espeially after a prednisolone boost.
Keep in touch with your team, to resolve as quickly as possible.
Hang in
😊
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday 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.
Thank you so much x
Sometimes you feel on your own dealing with flares so its good to share on this platform where lots of people can give advice through their own experiences. You have my sympathy. I have ankylosing spondylitis and have been flaring since my husband caught covid at the end of September and was told by rheumatology nurse to stop Methotrexate for 2 or 3 weeks in case I caught it from him. Thankfully I avoided it and him🤦♀️ but have had hip, ankles, big toes and sciatic pain randomly ever since. Not all at same time. I was diagnosed in 2020 so don't really feel I have had much benefit yet from taking 20mg Methotrexate a week
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