NRAS
23,116 members26,878 posts

RA not under control yet...anyone else?

Hi there

My sympoms started last Jan and diagnosed seronegative RA in May. Been on Mtx since August then dose increased to 15mg in October. Now using Metoject. Symptoms have snowballed over the year with not much respite. Feel so worn down by it now and finlly had to be off work sick these past few weeks after months of trying to hold on. Cons wants to add hydroxy in but bit reluctant though think I may need to go with it now. Spoke to NRAS hepline today which helped to regain bit of perspective as starting to feel nothing will help. Suggested I message on here to see if others can relate. Its struggling with work that im finding really stressful. Im only part time (3days) but have pretty responsible job with v long commute (110 miles a day). They are super supportive but i dont know how best to manage it as just went back after 3 weeks sick leave and already feeling like i cant cope as fatigue and symptoms too much right now. Do I bite the bullet and stay off until things really under control but that could be months!! or do I keep trying to push myself at it but not sure i can physically do that. How do others managein this difficult early phase? Hate being so unreliable! Aaarrrggh! NRAS helpine reassured me that this will be the worst time and that it will get better once meds sorted and to aim for a return to normal once under medical control except for occasional flare? Bit woried that may be too optimistic or is that a reasonable way to approach it? Sorry for long post. M

22 Replies
oldestnewest

Hi there .. Sorry you aren't feeling too great and yes you have a long commute I agree. Are you driving or public transport? Either way is tiring but driving more so .. The concentration needed. I think you may need to go with your rheumatologist's advice of adding in a second med to boost your MTX. I do hope this helps and you can soon feel less tired. It is difficult to know what to do re stay at home for a month or two to try feel better. I was temping when my RA was diagnosed so was able to take time off as I didn't have a permanent job. Which days do you work? Is it three consecutive ones .. Can you split them? It is very much a waiting game for the RA to settle down and frustrating when you want to feel better and be back at work. NRAS advice is spot on of course! This is the worst time until things have settled and once the meds are fully controlling the RA you won't feel tired. No it isn't too optimistic to think you'll get back on track. You will get there! 😀 Try not to do too much once you get back from work. Hope you are seeing your rheumatologist soon. Btw I love bees. I have drawn and printed a lot during my art degrees. 🐝

7 likes
Reply

Thanks for reply. It all helps. I keep bees so love them too. They are fascinating. Not been able to look after them much this year with the RA smptoms but hpefully by spring things will be better :-)

2 likes
Reply

Hello! I just want to say welcome, we are glad you found us, even though the reason sucks!

I have had RD for 30 years, but I have only been aware of my diagnosis for a few years. I had old school " You aren't dying so you don't need to see the doctor" parents!

I have been in a flare with an esr of 69 to 96 for about 2 years. I have other health issues that make treatment a little tricky! I take sulfasalazine, methotrexate, and Humira starts soon.

My best advice is to talk to your supervisor, let them know what you need from them while you are learning who you are in your disease. I look at my life as before and after the disease. There isn't anything anyone can say to you except you have to learn how to live, laugh, and understand who you are again.

I don't work anymore, I was a general manager of a restaurant that was too physically and mentally exhausting for me to continue running it. I stepped down to shift manager, and eventually a crew member. 50 plus hours a week down to 6 hours within a year. Point being that you are the only one that can figure out what you can do now.

It will get better, and you will find the right combination of meds. You will get your life back!

5 likes
Reply

You have been given some good advice by the helpline. I am on the hydroxy and i suffer no ill effects,though i might be the odd one here as a lot suffer with the side effects of the drugs. If you do suffer any side effects contact your rheumy straight away. If in doubt contact rheumy or your dr. They will reassure you one way or another. Hugs and know your not alone.xxxx

3 likes
Reply

I'm in the same boat. I feel your pain. It's horribly frustrating and helpless. While I haven't found anything to help with my pain, some things you can consider (if you haven't already) are: prednisone (for short term relief)... didn't help me though, prescription pain meds, and partial disability. I'm considering applying for partial disability because it's becoming too difficult to work full time. The low amount of money it pays is maybe not doable however. Sorry I can't offer any more help. I hope you find some relief.

2 likes
Reply

Hi

Sorry to hear you are going through this horrible time. I was diagnosed 4 years ago now after a horrific explosive onset. I needed 3 months off work and if I had waited for things to be " under control" would have waited over a year! I managed to get back into work with the help of steroid injections and a phased return and even then I felt pretty useless at work until things got under control.

I am now on triple therapy ( including a biologic) and things are reasonably well controlled.

Have you seen occupational health or spoken with your manager about what can be done to help you through this? They may be able to offer adjustments such as a short term reduction in hours ( if you can afford it) or allow you to take extra rests during the day?

For me, occupational health wrote to my manager and explained that RA was covered by disability law ( can never remember the name of this!) and that " reasonable adjustments" should be discussed.

I certainly don't think of myself as disabled, but it's good to know we have some protection at work.

I hope you manage to get things under control soon and you can get back to some normality.

3 likes
Reply

If I was still able to work I would get do much more happy.One of drugs I am on is hydroxychlorine and it has improved for me a bit. Why are you reluctant if it could help.why struggle. You can always try it and if it's not for you try something else

3 likes
Reply

I take hydroxychloroquine and I’ve been fine, no side effects that I’ve noticed. I’d do what your rheumatologist suggests and see how it goes. The only other thing I could suggest is to try going totally gluten free.

When I was diagnosed with inflammatory arthritis three years ago I decided it was one autoimmune condition too far (got several others 🙁) so I did some research and went totally gluten free to try and reduce my thyroid antibodies - they were the ones I knew were very high - it worked a treat so it’s been worth it. My RA is liveable with although I’m definitely creakier in this lousy weather.

If you decide to go on hydroxychloroquine, have an optician check your eyes before you start and check them every year as well as getting yourself an Amsler chart (go online, there will be instructions with it) and check them yourself at home because eye damage not dealt with immediately is irreversible.

1 like
Reply

Like many I am on triple therapy Hydroxy, sulphasalazine and methotrexate. Leflunomide did not work for me. Our RA is all different and it does take time to find the right combination. There are so many drugs/combinations to try if the first one is not the one for you. I have been lucky in I seem to tolerate the drugs well with no more than negligible side effects. Probably like so many with RA who do not appear here because they are just getting on with life.

While waiting for the metho to take effect my consultant has given me a course of steroids. I don't like them but they are great as a bridge.

I too work part time 3 days a week. Like you I have found the fatigue hardest to cope with. I am sure you will be being extra kind to yourself and taking more time than you think possible to rest when not working, and learning about pacing yourself, resting between essential tasks. I find non essential have to take a back seat. Have you also found all the helpful info on the NRAS website?

Good luck and as others have said the prospects for the future are so much rosier once under control.

2 likes
Reply

You should be aiming to get back to normal, as it is possible for many of us, and certainly don't lower your expectations until you have exhausted all other alternatives. But also don't have too high expectations of what you should be doing right now, be kind to yourself. It's a tough stage this one.

If you've only been on a proper dose of MTX since August it is still very early days for you. Everything about this disease takes soooo looong. It took me a year or so to get it under control and maybe 2 years to get into remission.

I too started on MTX, which helped but not enough. So I then had to add in hydroxy, which still didn't give perfect control, so then added in Sulphasalazine. These three together have kept me in remission for the last 5 years, so don't rule out taking more drugs. What I did was also really try to improve my lifestyle in parallel, and I personally believe that has helped me tolerate a bucket load of daily meds with no side effects. (I did try lifestyle alone without meds, but that was ineffective).

I did keep on working, although have now retired. But right now I think you have to put you first. Talk to your employer about whether there are options to slowly phase your return, from working less hours, working from home for a bit if that is possible etc etc. The more you look after yourself right now the quicker the return to normality will be.

But stay hopeful. I am pretty normal now which amazes me as the first 18 months or so we're so horrific.

4 likes
Reply

So sorry about your frustrating situation, that I believe you share with all too many. You said you were seronegative. I have understood that finding meds that work for SN is harder than for SP and that mtx often does not work. If you have tried it for over three months, without help I would talk to your doc about perhaps changing meds. Hydroxy is in fact the med that has least adverse effects and works for many quite well. Personally I find no point in suffering with a med that doesn't help. Statisticly mtx works for 60% and benefits are usually seen after 3months. Hope you get some relief soon. Simba

5 likes
Reply

I would follow your doctor's advice, many people need triple therapy togo into remission. Try not to worry about side effects as a lot of people never experience any. Uncontrolled RA can leave lasting damage, best to get it under control as quickly as possible.

3 likes
Reply

Hi. For some of us things seem to work very slowly, if at all. I was diagnosed Jan 2015 and am still having problems with many joints. I started Humira in June this year (after my second DAS score was still above 6.o in January) and I think it is gradually starting to work. Stiffness is a lot less and swelling is also now gradually improving. I'm hoping next year that my fatigue and pain levels will head in the right direction too.

Don't give up. It often takes a long time with trial and error with different meds but there is light at the end of the tunnel even if it seems a long way off at the moment. I would take everything offered- it might make all the difference.

As for work, could change your hours to work longer but fewer days a month so that you don't drop your hours but get to have more days at home? Any chance you could stay closer if you have 2 consecutive work days? Does your employer have an occupational health department who can help with supportive measures to keep you in work?

Good luck xXx

1 like
Reply

Just wondered how you are, 3 months down the line? hope something is working for you.

Reply

Hi Norisa

Thanks for asking. Things still the same. Had to stop Mtx as was just too intolerable but see Rheumy today actually to discuss new DMARD. Been on hydroxy since Jan but dont really feel its made any real difference yet. Have told work (last week) wont be going back. Been off since November and then had been working mainly from home since August. It just feels impossible right now. Its going to take a while for next DMARD to work and thats if I tolerate it. Then I need to see what 'working' means for me. Ive decided if I am able to work then I need to do something much closer to home so its less strain and strain generally. Im talking to OH about ill health retirement. If Im not eligible I can work freelance from home which Ive done before but am not anticipating this until next year to give myself time to focus on getting a bit better and a handle on this illness because its had such an impact on my everyday life. Trying to sort out if I can get benefits and had small amount of PIP awarded recently though have appealed it. Appreciate you asking. :-)

Reply

Ooh. Really hope the next meds improve things greatly. i can imagine the fight to stay at work has been too much. I hope when you feel better you can find work that is much better for you, distance and energy wise..

1 like
Reply

Where are you at in all this Norissa? Please dont reply if you dont want to..

Reply

Hi. Its my husband who has RA, not me, but I'm on his case! He was diagnosed highly positive RA in a major flare this Christmas. (that sounds more straight forward than it was!) On salfasalazine and methotrexate. He doesn't now have the pain and swelling, but struggling with debilitating fatigue. Ironically went down to a 3 day week jan 2017 so we could do more hill walking, but currently one foot still swollen and very seized up so can walk up the road and back, on the flat, with a walking stick. Awaiting physio. Work currently requires long days and 3.5hr train journey each way. Tried but just can't do it.

You have clearly suffered more longer and I really hope this next Dmard is successful for you. The uncertainty of it all is really tough!

Reply

Ah sorry to hear about your hubby. The iriny is not lost on me re the walking. I am a walker but now struggle to walk the dog despite living right on the beach and mostly use a walking stick to help support me. Its a tough one isnt it. The fatigue has been really difficult tk the point where initially I was working mainly from home emailing and doing admin but even tbat got too much. I used to work part time but long days and now I struggle to get a meal together or do a small activity and am whacked for the rest of the day. I know some people are a lot worse and its all about perspective but this feels a hard disease to adjust to in these early months / years? I know my husband has found it hard seeing me become quite debilitated at times or tearful with pain. Its hard on those around you. Wish you both well in the months ahead.

Reply

Thank you.It certainly takes some getting used to, but hopefully the right meds will enable normal life to resume for you and for my husband, even if its a new normal. I think comparisons are pretty unhelpful aren't they? if I am ill i really don't care if someone else is twice or three times as ill, I still don't like it. That said I have great respect for all on this site who battle on with this rotten disease.

P.S. I envy you living near the beach. To me everything seems possible when watching the tide come in and out.

Reply

Thank you and yes you are right comparisons help noone really and lead to craziness!! I certainly am lucky have that tide to watch..reminds us tgat everything is constantly changing I guess.

Reply

I’m not getting relief yet either and the fibromyalgia kicks my ass too. I keep waiting and hoping. On sulfasalazine and mtx now with pain pills and ice to get me thru the day.

Reply

You may also like...