Flaring after ages in remission (really long post, sorry)

auntie · 15. Nov 2018, 16:55

Hi everyone,

I’ve had seronegative arthritis mainly in my knees but occasionally other joints too, for nearly 10 years. I was on methotrexate for almost all of that time and did quite well on it until it flared and wouldn’t settle and I was put on Humira in addition in 2014. I went into a remission I didn’t think was possible - zero discomfort, absolutely no swelling and stiffness or fluid, and almost total movement/ability/stamina. However... I’ve recently stopped taking both these meds as I was getting increasingly ill since I started the Humira - about four or five times a year a viral infection with real bad post-viral fatigue that would knock me out totally for about 2 weeks. Then this year I had a bout of toxoplasmosis that had me off work and bed-bound for 10 weeks and which has left me with an energy deficit I don’t think I’ll ever recover from. So I’ve been off the metho & Humira now for nearly 8 months, in the hope that my immune system will recover, and in the last month have started to flare again (big surprise). Loads of fluid and swelling in my right knee, pain in both knees, unable to bed right knee, difficulty walking, etc etc. Just like old times!

To make matters more complicated... I’ve recently relocated to my native Scotland from London, moved into a new flat AND started a new job! I am a glutton for punishment. It’s all for the right reasons - better quality of life etc (and I also work in an industry where jobs north of the border are incredibly rare so when they come up you just have to grab them, arthritis or no) - but at the moment everything just feels really hard. Trying to get used to a new environment and learn the ropes in a new team with more responsibility than my last role, all while in pain pretty much all the time and limited mobility. I’ve been *so* unbelievably lucky with my long bouts of remission, that I’m quite bad at dealing with the pain every day (it’s a nice problem to have, I know). I’m trying to keep positive about it though, because it’s my choice to stay off the metho and Humira for the moment. Added to all this is the complication that because I’ve moved, I need to wait to be referred to a new rheumatology team which is going to take the usual 12-18 weeks. So I’m kind of out on a limb with no treatment expect what the GP can offer. They’ve offered me a systemic steroid injection which I’m not sure I want to go for yet, as I’ve heard mixed things and at the moment I’m just about coping. I’m taking naproxen and paracetamol to try and manage it, which it sometimes does and sometimes doesn’t, and I’m also having acupuncture... nothing to report on that score yet.

Anyway, I am such a rambler so I’ll stop now, I also just wanted to ask what people think about how much of a bad idea it is to stay off the really strong drugs - DMARDs and biologics - for longer periods? I really wanted to be off them for a year to give my battered immune system a bit of respite, but at the same time I don’t want to run the risk of doing permanent damage to the old knees. In the end I suspect it may be a moot point as I might not get an appointment for another 3 months in which case my self-prescribed year will be just about done! I wonder if I’m being too cavalier about my joints... but I think before I was being too cavalier about the drugs. Boy did they sort my arthritis out... but it’s potent stuff.

Thanks, guys, for reading my novel if you made it this far. Hope you’re all keeping relatively well.

Lottie xxx

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jennand · 16. Nov 2018, 02:25

Hello Auntie, what a lot your dealing with. It’s difficult to advice you what to do as you do seem well informed and are well done the road of your choice. What I can do is tell you about my “journey”. I have Rh in hands & feet, OA in knees & shoulders. I have been on 2 DMARDS for quite a while. Originally I took 20 mags of Leflunomide a day but like you suffered too many infections so it was reduced to 10 mg. Infections reduced but pain increased so after 2 yearsI started biologics (6 months ago). However I have just had a 2 month long infection and it’s really knocked me for six. I have considered stopping the injection but have tried to weigh up the pros & cons. Pros are self explanatory, the treatment plan improved my quality of life but the cons mean I am laid low occasionally with infections. So I am continuing at the moment. I’m being super cautious about avoiding situations where I feel I’m at risk ( hospitals, drs, public transport, shops) Can’t avoid completely of course but I use vaseline in my nostrils, frequently clean my hands with bacterial spray and have a steam inhalation when I get home. I also take Vit C, zinc & garlic capsules. It makes me sound paranoid, I know, but my goal is clear - try to keep my joints moving and pain free for as long as possible. Good luck with your new job and I hope you get sorted with your new Rh team soon.

auntie · 16. Nov 2018, 02:38

Thanks jennand! So sorry to hear you were also laid low - sometimes I feel like I’m the only one getting such debilitating side effects and the doctors seem to think it’s normal and I should just deal with it/take it in my stride - but for me the fatigue is worse than the pain, hence currently wanting to stay off them. Time may change my mind on that! Perhaps a lower dose next time that’s not so aggressive... it’s always a balancing act isn’t it?

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dreamdaisy · 16. Nov 2018, 03:50

I feel for you, how awful to have the meds actually 'work' and then stop. I count myself lucky that I have never had such benefit from them so I know where I am: the creek is OK, things would be better if my paddle didn't melt in water but one can't have everything.

I don't think there is any hard-and-fast rule about the meds, for some they stop them for a while for many reasons, re-start and they're fine, others re-start and they are not so another combination has to be found. All of this takes time. I had three months off back in 2006 when an anti-TNF tried to explode my liver (I felt fine throughout), had to begin oral steroids in February 2007 (arthritis? What arthritis?) and then began in April 2007 with an entirely different anti-TNF and injected meth. I soon realized that being on the meds was a better option than not. To further help myself toward a better future I stopped taking the pred in 2011, taking a year to withdraw.

One of the drawbacks with the forum is that it is used mosly by the newly-diagnosed and those who are not doing well so it can be tricky for the few who reply to encourage. I've been there and done that with starting meds, getting nowhere, trying others, getting nowhere and am now definitely in the arthritic mire but twenty two years on that's no great surprise. You have undertaken some of life's major stresses all in one go and arthritis likes stress, it feeds its fires. It just be very hard for you and I do not envy you one bit. Having lived a life dominated and enabled by medication I have never been able to regard it as a choice, I have experienced side effects but got through one way or another because one has to. Arthritis demands a great deal of patience and stamina of those of it affects while stealing their ability to be so. DD

stickywicket · 16. Nov 2018, 10:52

Phew! New job, long house move, new GP and no rheumatology as yet. I don't envy you. That's an awful lot to deal with. No wonder you're flaring even without coming off the meds.

I'm sorry but I don't think I can help other than by providing a sympathetic ear. We are all different in how we deal with the vicissitudes of arthritis and, having had to deal with mine for years without DMARDS, I'd always prioritise the meds over anything else and then try to sort out how to minimise the viral infections. I'm a pain when it comes to avoiding anyone who has one. ("You don't mind, do you?" "Well, actually, yes I do.") I'm very big on antibac gel and I make others use it too. It's OK for them. They throw things off in a few days. I don't. I do stop the meth when I have a cold or virus, though, but I'd never stop it just to let my immune system fire up as it's the immune system that's the problem. I don't know any diabetics who give themselves an 'insulin-free year' and it seems the same sort of thing to me.

I do hope your rheumatology appt. comes around soon but you might be put on different meds. I remember once being told that it's not worth going back to some as they don't work well second time around. Plenty more where they came from, though

auntie · 16. Nov 2018, 12:43

Thanks everyone. It’s the sympathetic ears that are the best help! Just being able to let off some steam to folk who know what it’s like is worth its weight in gold. Thanks for listening xxx

DD, you’re so right about the patience and stamina... I’m often a pretty impatient person but having arthritis has taught me to slow down out of necessity.

I’ve always found it hard to avoid people with infections - living in a huge city and getting public transport every day, and working in a massive office with 100s of other people, all of whom bring their germs in. With friends and acquaintances it seems ok to be cautious/picky but short of asking anyone I’m due to have a meeting with at work whether they have a cold currently, I don’t know how to avoid it! And then there are the people who don’t understand, roll their eyes and say “well, no one likes getting sick, you’re not the only one.” My most recent boss (whom I miss terribly) was so brilliant, and would proactively tell me when she had an infection and would make sure I kept away from her.

Interesting that the same drugs often don’t work second time round. I’ll be ready for the trial-and-error gauntlet next time round! Wouldn’t it be great if oral steroids were a long term option...

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dreamdaisy · 17. Nov 2018, 07:52

When I was teaching my pupils and parents rapidly became used to being handed bottles of anti-bac gel, the same with guests coming to the house. I usually have anti-bac wipes in my handbag so I can wipe surfaces when out and about, I care not who I might offend or upset because they are not dealing with what I: those who are (for whatever reason) comment positively. I have been known to turn people away if they roll up with a heavy cold, I have to be ruthless because I have enough to be going on with. I rarely catch a bug but when I do I stop the meds to help me recover.

We have to educate people about the difficulties of being immuno-suppressed, they are not going to know of be aware of what it entails and could mean, in the same way for example that I am not fully aware of how Type 1 diabetics manage their condition. DD

danm2010 · 2. Dec 2018, 02:30

Hello auntie,

Your situation seems like mine just a few years in advance. I was on humira and it worked a treat and even after 6 months I came off it and it went into remission - that was 10 years ago!

I’ve changed jobs, don’t get sick pay and what happens? Flare up!

So back and forth from doctors to get humira treatment again. I’ve been told I’ll be on humira and methotrexate together which I didn’t have the last time so I’ll keep you updated on how I do - I haven’t started yet as waiting for the nurses to get back to me (really annoying as I’ve rang 10 times and left 2 messages so sort out an appointment to restart)

We are lucky we can have bouts of remission but at the same time having to restart the process again and dealing with pain again can be frustrating and you plan your future based on being in a ‘normal’ condition - sometimes I think it may be easier to plan ahead assuming it’s gonna flare up.

Hope you are doing better,

Dan

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auntie · 2. Dec 2018, 05:21

Hi Dan

Thanks for your reply and sorry to hear you’re flaring up as well. I hope you manage to get seen soon - the waiting can be so frustrating. Keep phoning those nurses until they get you in! I have the standard 12-week wait for new patients and won’t be seen until February... trying to stay zen about it all. In the meantime I’m having acupuncture (which 2 different GPs have all but laughed at me for, but I’ll try anything that helps the pain at this point.) I was on MTX and Humira together for about 4 years and it worked a treat for my joints... but the side effects were too much for me. I hope you get on better with them than I did and achieve a balance - let us know how it goes.

I definitely assumed I would flare coming off my meds, but naively hoped I’d have a bit longer to settle into my new life/job before it did. Wrong! Silly me. I also thought it’d be worth it - I thought if my immune system was no longer being sledgehammered by the Humira + MTX then the constant brain fog and fatigue caused by the toxoplasmosis might ease and I’d get a little bit back to normal but it hasn’t happened yet. The flare up is painful and seriously debilitating (am currently getting taxis to work every day as walking is too difficult and there are no direct buses) but the fog is worse as it leaves me with no energy, no spirit, no desire to do anything except crawl into bed at the end of the day. It’s been like this since March and now I wonder how I managed to pull off a job move like this - and why I ever thought relocating might help?! I can push myself if I need to (I can get through a day at work) but then in my downtime I’m a wreck. I begged my new GP for a referral to an infectious diseases clinic and she grudgingly agreed but told me that they wouldn’t be able to do anything and “some people struggle on with it for years, not months” - which really made me feel great about it all and felt like she was telling me to stop complaining. I’d rather deal with flaring arthritis than this totally bleak lack of energy but at the moment I’ve got them both and while I know in February I might be able to go back on a biologic treatment that might help the knees, I don’t know what that might do to my toxo symptoms and how long it will take to get back to normal - if ever. Sorry to rant, I just feel helpless as everyone keeps telling me there’s nothing to be done, and it feels so unfair to have randomly caught yet another chronic/incurable disease that robs me of all my energy and leaves me feeling vaguely dizzy every time I exert myself (for example by having a long conversation or going outside). I’m in my early 30s, don’t have a partner, I have a good network of friends but I sometimes wonder how I’m ever going to meet somebody to share my life with - or raise a family - if all I will ever be able to do outside of work is rest and sleep?! I read an article about a journalist with the same condition who had to take months and months off work and still wasn’t getting any better. I sometimes wonder about stopping work and going to live with my parents for a bit (luckily they would be in a position to offer that to me... I know not everyone has that).

So sorry to offload. I’m in a dark place at the moment. I know it’s not an arthritis problem and people aren’t familiar with this condition so I’m not expecting miracle cures/advice, but just thanks for listening. It means a lot!

Lottie x

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danm2010 · 2. Dec 2018, 07:12

Rant away.

I think having life changing conditions it’s easier to think of the negative mile stones which need to be overcome down the road especially when you’ve been there before.

You’ve managed to move and the new job - yeah it’s a constant struggle but I really think if you jack it all in and move in with your parents you’ll feel even more dependent on them and lose more of yourself.

People do get through it and it’s not easy but with this community there is a lot of understanding and people do/can listen.

As for future relationships as you’ve mentioned you’re in your early 30’s and have plenty of time to match up but you need to focus on one thing at a time or in your case two even if It’s another year you’ll get better medication or better GP - remember you don’t always have to stick with the same GP if they aren’t supportive.

Just moving forward,

Dan.

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Flaring after ages in remission (really long post, sorry)

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