Back after five years in remission

HJBeans · 27. Aug 2018, 08:50

Hello everyone. Hoping to connect with knowledgable folk while getting used to arthritis symptoms and treatments again.

Was diagnosed with RA in 2007, it responded very well to sulpha and I was lucky to have no joint erosion and limited symptoms from 2009. Moved in 2008 and second rhuematologist said he suspected it was inflammatory / reactive rather than RA as he'd never seen it so well controlled. Went off medication in 2012 following two early miscarriages and remained symptom-free after the birth of my son in 2013 so was discharged from the rheumatology clinic the following year.

Had a second son in 2016 and began feeling unwell with exhaustion toward the end of that year. Had various vague and on/off symptoms in 2017 and the first half of 2018 - lots of infections, fatigue, eye problems, irregular periods, hair loss, asthma/wheeze, GI problems, chest pains - with no underlying cause found. I suspected a mix of stress and hormonal changes (I'm 42) and have been trying not to go down the rabbit hole of feeling anxious about my health.

Then a month and a half ago my joints have become swollen and stiff again, and I've just been to a rhumatoloist who confirms fluid around the joints. All GP blood tests are clear (original 'RA' was seronegative as well) and he said it was an inflammatory arthritis pending results of further blood tests. He gave me a steroid injection into a muscle (never had that previously) on Friday and have been *much* worse since.

Working from home today to try to rest, but really struggling to cope with the potential return of a lifelong and unpredictable diagnosis - plus fear that all the other symptoms are somehow related to a broader systemic problem. When I was ill before I was young in a low-stress job and no real responsibilities. I've now got a workload I can't keep up with and many people depending on me to lead various projects, and two small kids.

Sorry for the huge post - just offloading really as I struggle to come to terms with being in this uncertain place again.

Could I ask two questions - maybe better placed in the living with arthritis section but will try here. The first is whether anyone's had the experience of a years' long remission? The second is whether anyone's had a systemic steroid injection and then felt much worse afterward? I've read about cortisol flares for injections into the joint, but there's not much info on the systemic injections. Thanks in advance.

[Deleted User] · 27. Aug 2018, 09:18

Hello
Welcome to the forum. You will find many people on here who are friendly, knowledgeable, who will emphasis with you, offer you support and advice. As you say the Living with Arthritis section is the most used one, but I am sure you will find some forum members will welcome you on this page.

At the top of the page you will see buttons for the various subjects Arthritis Care talk about. Have a look at some of these pages and there may be some information to help you. Arthritis Care also has a freephone helpline on 0808 800 4050 where there are people who you can talk to and they can offer you advice and support.

I am one of the moderation team and we all have one or more of the Arthritis "hanger ons" or look after family with similar.

I look forward to seeing you post on hear again.
Best wishes

ChrisK

stickywicket · 27. Aug 2018, 10:04

Hello and welcome from me, too. Please don't apologise. You have a lot to deal with and the stress of uncertainty makes everything worse. Indeed, arthritis thrives on stress so that could even be a factor in it rearing its ugly head again.

RA (which I have) is a form of inflammatory arthritis as are many other types. OA (osteo) is the one that isn't inflammatory but, just to confuse things a bit more, when rheumatologists are not sure which particular brand of inflammatory arthritis someone has, they often just label it 'inflammatory' until or unless something else pops up to aid a specific diagnosis. It makes little difference. The meds are all the same.

Obviously, we can't tell you whether or not all your symptoms are arthritis-related. It seems perfectly rational that many might be and, as you say, age might be a factor as hormonal changes do seem to impact sometimes. I was diagnosed at 15 and my best 9 months was when I was pregnant with my elder son. Afterwards was awful and so was my second pregnancy. In my early years I did find the RA fluctuated. In fact, my flares coincided(?) with O-levels, A-levels and Finals. Since my first son was born, though, I've had no remissions.

Steroids, in any and every form, have always helped me. The 'butt jabs' give me about two month's respite but we are all different and they don't work for everyone. I don't think they usually make people worse but it might be that it did nothing for you and your flare was increasing anyway.

When do you see the rheumatologist again and, hopefully, get back to DMARDS?

dreamdaisy · 27. Aug 2018, 11:36

Hello, I am sorry you have had to find us and can understand your fears and uncertainties - on-going ill health can do this to one. I am fortunate in that being anything but healthy is my norm and have never experienced the Damocles Sword of remission.

I have psoriatic arthritis, a sero-negative form of auto-immune inflammatory arthritis and the joint damage that caused has led to osteo: some joints have one, some the other and others both. I am in my 22nd year of the malarkey so used to dealing with it. I worked for 17 of those years but was self-employed which meant I could easily tailor things to suit my needs.

I have had numerous steroid injections for the PsA into my knees which, despite resting properly for 48 hours after, did nothing to ease the arthritis or make me feel better. One into my ankle for OA did work for three months then of course it all came back so now I don't bother. Tablet steroids, however, were lovely so I stopped taking them after three years because of the damage they were causing to the rest of me. I am in the eighth year of taking injected methotrexate and humira, my disease activity is under control which is as good as it gets. DD

HJBeans · 27. Aug 2018, 13:09

Thanks for the welcome, everyone. I'm back to the rheumatologist later this week so hopefully back onto sulpha then. Though I have a particularly hectic time at work over the next few months and recall from the first time that the sulpha completely knocked me out for about a month (just flew home to my folks place and slept) so wondering if I should try to put it off till a 'better' time work wise. Or maybe accept that I can't be the manager/partner I'd like to be and let my team and collaborators take the brunt of my management not having a backup plan if I'm not there and trying to keep too many balls in the air.

dreamdaisy · 28. Aug 2018, 02:31

There are more things available than sulph so perhaps you could try something else. I remember it was a gradual build with those tablets, it took weeks to reach the dose the rheumatologist thought would be effective. I bruised magnificently for ages but only from the waist down. People have retried meds and found them better the second time around so that is also a possibility.

I don't think arthritis has lessened me in any way, yes it has changed the way I live and I have had to adapt and change what I do and how I do it but doesn't everyone as life progresses? Don't lower your expectations of yourself, just approach them from a different angle and don't be afraid to use those around you for the grunt work (including family) so you can save your energies for what you enjoy. DD

HJBeans · 28. Aug 2018, 06:30

Thanks, dreamdaisy, for your very wise words. I think I'm in the denial / anger phase of adjusting to this being part of my life. I was consistently humbled as I adjusted to the disease last time round by the many people online and in life that adapted with grace to what their bodies threw at them each day. You are, of course, absolutely right.

dreamdaisy · 28. Aug 2018, 08:43

Thank you for your very kind (and totally undeserved) words. DD

stickywicket · 28. Aug 2018, 09:58

DD is right and we do have to adapt but, with grace? I usually adapt with a snarl and a few expletives

It helps :oops:

Back after five years in remission

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