When I was diagnosed in September last year I was on anti-inflammatory steroids for 8 months. My last injection was in February, and the Rheumatologist told me it should be out of my system in 3 months, so that would've been May.
I know that the steroids are a synthetic form of cortisol (stress hormone), so when I suffered any stressful events my reaction was out of all proportion to how I'd normally react. What I don't understand is why I'm still feeling incredibly emotional and tearful all of the time. Does anyone else feel like this?
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cuppa69
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I'm Ailsa Bosworth, NRAS National Patient Champion, and from what you say, you are relatively newly diagnosed still and until such time as you become stable on a treatment that works for you, you are bound to be feeling this way as it's a big adjustment learning to live with a painful and chronic disease like RA, so don't beat yourself up. How you are feeling is quite normal for where you are with your journey, I think also that we all feel that way at times when our own coping mechanisms get a bit frayed at the edges! Please be aware that our Information and Support Team are available on a daily basis with our national helpline should you feel a chat would be beneficial 0800 298 7650 (09.30-4.30 Mon-Fri). You will also get support from others here on our HealthUnlocked site. Our main website also has tons of information on all aspects of living with RA nras.org.uk
Whilst your medical treatment is going to be tailored to you as an individual, I can tell you that the RA guideline advises use of steroids as bridging therapy when newly diagnosed for as a short a period as possible in order to cover whilst the Disease Modifying Anti-rheumatic Drugs (DMARDs) take effect. I don't know what you have been prescribed but in the event that the standard DMARDs are not working after 6 months or so, rheumatology teams would generally look at things like moving you from oral MTX to injectable (which can reduce side effects and be more effective) or adding in a biologic or JAK inhibitor. Long term use of steroids is avoided unless essential and agreed between consultant and patient. You can find out more about medicines in RA in our e-learning programme SMILE-RA nras.org.uk/smile and our Medicines booklet which you can order here: nras.org.uk/product/medicin... Hope this is helpful and do call if you think we can help.
Many thanks for your reply, and for all of the helpful advice and information. I've been on MTX and Hydroxychloroquine since September last year. Since March this year I've also been on Adalimumab, which has really helped, as have the comments and support on this forum 😊
As you mention cortisol is the stress hormone, if your HPA axis has switched off and your body isn’t producing it’s own cortisol, it can lead to many low cortisol symptoms, which includes inability to cope with anything. I had a severe stroke due to an adrenal crisis, I was waiting to see an endocrinologist as I suspected I had an issue with my adrenals. 3 weeks before that first appointment I had my stroke. I had been losing weight, had nausea, lightheaded , and low blood pressure. The 48hrs leading up to the stroke I suddenly couldn’t cope with any stress, and was in tears constantly. I would ask your gp for an early morning blood cortisol between 8-9am , it should be >350, mine was undetectable as I produce none. It’s to check your body is producing its own. I have severe adrenal insufficiency, and need steroids for life. It is possible to get AI from having steroid injections into joints. I feel it’s important to rule this out. It can also occur in patients who’ve never had steroids, if they have issues with their pituitary gland. Here’s a graph showing the type of symptoms you get with low cortisol, it’s a rare condition and gps gave little knowledge of it.
Hi, many thanks for your reply, and I'm so sorry to hear about your stroke. That's awful. I'll ask my GP about the early morning blood cortisol test and see what that reveals. Thanks for all the helpful information and advice. Take care.
It sounds a very normal reaction to having a diagnosis of a long term illness. It's very similar to a bereavement as you have to make big adjustments to a new way of life. Most people find that it helps to talk to others who have been through it. Look after yourself gently. It's not your fault or anyone else's fault just one of the big hills in life to climb.
Many thanks for your reply. I've had to deal with a lot of tragic events over the years, but I've managed to cope because I've had my health and was able to be fairly resilient. Now that my health has taken a knock I've felt very vulnerable, but having read the replies on here has massively helped. Onwards and upwards 😊
Oh my god, that's awful about your hubby. I had a similar experience with my partner, who said she's not very good with sympathy. I said I don't want you to feel sorry for me, just show a bit of concern and ask me if I'm okay.
You're right about the grief/loss bit. Very difficult to negotiate as it's something I've never experienced, but the messages on here have been really helpful 😊
Very difficult when someone says they don't do sympathy with health issues.
It wasn't a shock for me about my OH knew he'd be like this hence the upset on my part knowing he'd hate my having this condition, he's been pretty good over the years, bless.
Worse one for me was a close friend who told me this when I asked for help on going on a trip, she said she doesn't do this type of thing, then tried to palm me off on her mum who is a dear, but not what I wished for. In mitigation have to say she's got a double whammy cos her hubby was diagnosed with RA about 2 years after me so guess it's all awful for her.
Instead my son & family kindly took me away so I got to do what hoped to do namely visit Monet's garden. Worked out well cos me & grandson have similar stamina. They're taking me away again this month this time to Kefalonai, they had a holiday there already so know their way round and have catered for my needs.
I also booked myself a holiday with a company that support ones with disabilities going in September, I'm fine on my own, looking forward to being with others who understand we all have our own pace. 😉
You're in early stages when it's very roller coaster, it does improve, so hang in. Make sure you're getting support from your RA team, & GP surgery, don't leave things hoping they improve rarely do, better to see what help is available & use it. 😊
I'm sorry to hear about getting palmed off by your friend on the trip, but like you said about her hubby having RA too, maybe it was just a little too much for her. At least you got to go away with your son and family. Monet's garden eh? Very nice. Enjoy your other holidays, you're making me feel like I need to get my finger out 😄
I've found other people's lack of understanding can sometimes be as big a hurdle as the condition itself. I'm quite solidly built, so everyone sees me and says "Well you look okay", but I'm fine with it. I just try to educate them and say that I hope to be back to work soon, but I don't want to wreck myself in the process so I'm taking it steady.
Went to the G.P this morning and will be getting a blood test for cortisol levels tomorrow morning 👍 Then it's just wait and see what comes back. At least I'll have a better idea of where I'm at. I'm now learning not to be such a Trojan and ask for help when I need it. 😊
Most think I'm a bit arthritic cos I waddle look as if have a back problem, and say how well I look lol. I don't mind about this just glad for ones who know & respond accordingly .
I submitted a cortisol blood test last Friday, but haven't heard back from them yet. I'll phone the G.P in the morning.
Sorry to hear about the arthritis (osteo?) that's causing the waddle. I've just started doing voluntary work at Chelsea & Westminster hospital and was helping a lady who'd had R.A for forty years. Blimey, she'd really been through the wars, poor thing.
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Tearful
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