OH in his thirties and long term prospect

[picklednut]

My OH was diagnosed with RA last June with RA and he's in his mid-thirties. We had a pretty rough year last year with it but now he's on triple drug therapy and his symptoms have seemed to have settled a lot although he still has inflammation in his knuckles and pain in his wrists. I'll admit I was completely knocked sideways by the diagnosis as you think of RA as an illness you'd get later in life and I initially struggled worrying how his health would be in the long term. He's a self employed manual worker and currently we have to take it one week at a time as RA still seems to be throwing a spanner in the works whether it be flare up of inflammation or side effects of the drugs.

I suppose I'm just wondering if there are other people on here diagnosed / living with RA in their "earlier" years and whether you've got a stage where you live an active "normal" life with the right medication?

[net2012]

I am in my late 50's. Diagnosed 5 years ago. Have been on biologic treatment (Humira) for 2 and a half years, and yes I lead a pretty normal life now

[Needforname]

I'm 36 and have been in pain for 14 years. Started with stomach pain, then back pain, then neck pain, then wrist and now knees. I've also experienced intestinal and nasal polyps, lychen planus (itchy skin condition on feet), twisted intestine (required surgery), heartburn, dry skin, erectile issues, brain fog, anxiety, etc.

I was finally diagnosed with RA about 4 months ago. Blood work showed a negative RA factor, but a very high anti-ccp level of 1600. I decided against my doctor's recommendation of suppressing my immune system with Methotrexate. I instead went on LDN, improved my diet, taking supplements, cbd oil, borax, and turmeric paste.

I'm still in pain though and haven't seen improvement. I'll probably have to go on Methotrexate soon. Sorry I can't offer any medication recommendations or success stories. I guess I'm responding to the first part of your question regarding folks in the 30's. Best of luck with the current treatment plan your OH is on. By the way, what is an "OH"? Ornery husband? I googled it to see what I could find and stuff on Ohio was shown lol.

[ruth_p in reply to Needforname]

Occupational health lol. But it's most likely other half 😀

[Needforname in reply to ruth_p]

That makes sense

[ruth_p]

I was diagnosed at 14 but I'm well controlled with the right medication. I teach a reception class full time and exercise when I can. I tend to catch a lot of colds/coughs from the children though! I have done 60 mile organised bike rides. I'm not sure what normal is though as I've lived with RA for 21 years. I have had both my hips replaced approximately 10 years ago (due to steroids so avoid high doses for long periods of time, I was on them for 12 years). X

[BoneyC]

I was diagnosed as a child, age 6, in 1971. I led a relatively "normal" life, but wasn't allowed to do sports at school. I worked from age 16 for 22 years, had two healthy children. It was when I had spinal cord compression requiring neurosurgery that things started to decline, then hip replacements, infected prosthesis, Girdlestones procedure, now need elbows, shoulders and pantalar fusion, which they recommend I don't have, but to keep in perspective, I've had the disease 46 years. Methotrexate has been the most successful and I was one of the first to go on it. If your husband's mid 30's, 46 years on, is a long way off. Good luck.

[oldtimer]

I was diagnosed at age 37, have managed a more or less normal life since then and only really found the joint damage disabling nearly thirty years later. But I did have to change what I did so that there was less physical work and I had more control over the hours that I worked.

Could he look at retraining? Doing something based on computers? Perhaps go to the library and look at careers advice offered to younger people to have a re-think about his abilities? Perhaps make an appointment at the job centre with a disablement resettlement officer?

[nomoreheels]

I'm sorry you're needing to seek help for your husband picklednut. Yours is a good example of why many of us here now refer to RA as RD. You see what is usually thought (or assumed, why would they know if they didn't have it?!) is that rheumatoid arthritis is osteoarthritis, which I'm sure you now know is degenerative & more often than not because of that age-related, an older person's disease though that's not always the case, I was 48 when I was diagnosed at the same time as RD. Anyway, we've ditched the arthritis & changed it for disease which I've found helps people understand just what I've got.

Now I was 54 when I was diagnosed so not in your h's age range but I was fit & healthy, I only took migraine relief meds occasionally prior to suddenly showing symptoms of RD. I had a good GP who picked it up straight away I think somewhat fortunate considering only my feet were my biggest concern & the reason I went to her. My RF & anti-CCP confirmed her suspicions. I was living abroad at the time & there was a poster on her wall of the anatomy of RD so either she had a special interest in autoimmune diseases or GP's are more au fait with autoimmune diseases than they seem to be here. A little over a fortnight later I had a confirmed diagnosis of seropositive RD, other joints were affected but they hadn't yet caused me problems & it had been caught quite early. This has meant I've little in the way of destruction, excepting my feet but that's a whole other story! I started hydroxychloroquine, a short course of steroids & a couple of NSAIDs & by the time I saw my Consultant 3 months later I was pretty much pain free. He juggled my meds about a bit & following year MTX was added but when I didn't show enough improvement the HCQ was stopped & my MTX dose was increased. Currently I'm still on MTX (8 years now) & leflunomide plus NSAID & various pain relief for the OA. I do pretty well, limited with walking sometimes because of my feet but I don't let it stop me doing things. I infrequently have fatigue nowadays but if I do I don't push through it, you'll never win if you try to!

Your h is just over 7 months into his RD journey, that's not long considering at least 3 of those months were leading up to his DMARDs working to full benefit. It can take a little while to settle into one DMARD let alone triple therapy but that suggests to me his disease isn't particularly mild, possibly destructive? You don't say if he's prescribed an NSAID.... that may help in the interim, bring his inflammation down until he next sees his Rheumy, his GP should be able to prescribe him a suitable one. It could be that one or other of his meds need a slight adjustment if he's noticing more inflammation, it happens as Rheumatology isn't an exact science & we all respond differently so what suits one person doesn't necessarily suit another. If it comes the time & DMARDS aren't holding the disease at bay there are meds called anti-TNF's & then biologics. I don't know enough about them as I've fortunately not needed to progress to them but there's lots of info out there, the NRAS site is one which covers them. In fact it may help you to have a better insight to your h's struggles by having a read through site, nras.org.uk, or the Arthritis Research UK is also a reputable one, arthritisresearchuk.org

I hope you find it helpful being here. It's so good you're caring enough to research & ask for others experience on behalf of your h, we have a few partners of RD'ers who are members here & I can say from experience it's so much easier if your partner understands how RD affects you & it's little foibles! 😜

[AlexandriaUK]

I am now 64 and was diagnosed in my early 40s although I was told I had possibly had it years, I have never taken any drugs although have been told I needed to, I changed my life style and added things like tumeric big time and swimming and although I'm not saying I'm pain free which goes witout saying but im not in agony either, i do have other very disabling things though so walk on crutches. but I believe I'm also not going to be killing myself with some very impacting drugs.

I have not taken this decision lightly either and worked full time until retiring at 60, so take heart its not always the worst disease out there and with good medical and personal support you can lead a full and active life