Am new to RA, diagnosed last august & seemed to be in remission until I came off my steroids. Now it's flaring up again.

[mellymellg]

I find the worst bit not being able to sleep..I have quite a stressful, full on job..& I just find it hard..not sleeping am on salfazalazine but no steroids any more..will call the hospital tomorrow to see if I should start with the steroids again..ho..hum pain & stiffness not too bad but terrified of it getting as bad as it was..

[aligator]

Hi, can understand your concerns,I was diagnosed 4 years ago & I've taken steroids at various doses through out. The fatigue we struggle with is unbelievable so I hope your call today brings the help you need plus the meds need to know how you are. Take care of you. Love Alison x

[mellymellg in reply to aligator]

Thanks Alison :O) Do you take them all the time? I really want to get off them.. I've got an appt on Monday now to talk through my options.. I think I'm pretty lucky by the sounds of things as at the moment things aren't as bad as they could be.. but I just don't want it to get as bad as it was

[JackyL]

Hi Im sorry to hear of your recent diagnosis. I have had RA for 24 years. After having a lobectomy for lung cancer 2 years ago (I am a life time non smoker) my RA flared up to the point where I was unable to walk without pain. I was put on steroids which did help but i think the side effects for some people can outweigh the benefits if steroids are taken long term. There are alternative drugs which can be combined with salfazalazine and it may be this would be preferable to returning to steroids. Best wishes Jacky

[mellymellg in reply to JackyL]

Good Grief.. that sounds really tough.. my heart goes out to you.. my mum has been on steroids for years she's got a condition called Sarcoid.. so I've seen the horrible side effects.. I'm hoping that I might be able to get off them.. as it seems that in comparison to most others I'm fairly lucky as my symptoms aren't too horrendous.. take care Jackie.. M

[pineapple_head]

I'm not sure which is worse for you but I have to take anit-inflammatories everyday as well as Leflunomide. The anti-inflammtory that I take is Arcoxia - Etoricoxib 60mg daily. Without it, i get too much pain and stiffness. Perhaps some might say that I should have another DMARD but I am unable to take sulphasalazine and Methotrexate but for now, what I am on works as I am able to cope with work and a bit of social life.

Why don't you ask your rheumatologist whether an anti-inflammatory would help in your case instead of steroids?

[mellymellg in reply to pineapple_head]

Thanks.. I'm seeing them Monday.. so I'll ask.. this is all fairly new to me.. so I'm taking all the advice I can get..

[helixhelix]

Hi there,

One of the (many) difficult things about RA is the length of time it can take to find the right mix of meds to get it controlled and get you back to normal. I think we've got used to living in a world where a lot of things can be fixed quickly, but this sadly isn't like that.

Anyway, some people do find that they have to keep taking steroids as nothing else will work well enough. But that should really be the last resort after everything else has been tried, as they aren't good drugs to take long term - particularly for young women. Loads of us need them to start with, while we try out the other meds, but then usually are able to drop them. And if you are only ok when taking steroids then you're not really in remission it's just that they are extremely good at masking symptoms. (And steroids can mess up your sleep patterns too).

My own experience (it took a year or so to find the right mix, and now I'm 95% normal again) tells me that the best thing you should do is start pushing your rheumy to try other DMARDS. Have you tried methotrexate? I know it sounds like a scary drug, but it works brilliantly for me with no awful side effects, and is often described as the gold standard drug for us. And in the meantime maybe as pineapple head suggests ask for stronger anti inflammatories and even a steroid injection. You will get there....good luck.

[mellymellg in reply to helixhelix]

Hey Helix, thanks.. I'm seeing the docs on Monday.. so will have a chat.. they've been pretty good so far & to be honest I think I'm one of the luckier people with this condition as although it's been bad.. I don't think it's as bad for me as it has for some of the other people who are on here. it's all a bit scary.. I'll see what they suggest.. I'm a little scared of methotrexate too.. as they tell me you just can't drink alcohol.. I know my health is more important than my social life.. but I do enjoy a glass or 2 of wine.. & I don't want to wreck my liver ;(

[nevadawoods in reply to mellymellg]

Hello again. My doctor told me an occasional glass of wine will not hurt with methotrexate. I don't really enjoy drinking all that much, but I have had a few times when I celebrated with more than one glass of wine. I've been taking methotrexate once a week since 2004 and haven't had to up the dose at all. My RA has not progressed. My only bad side effect is that I feel foggy headed the next day (I take mine at bed time). I had other side effects at first, but as my body adjusted, I rarely notice anything but the foggy head.

[Marz21]

Hi, I also take sulfasalazine and was taking steroids when I started to really struggle on a lowered dose of sulfasalazine. Steroids did seem to have an impac, but the side effects started to become really awful, when I came off them things started to deteriorate quite suddenly with the RA. I have the complication of ulcerative colitis so struggle with changing/trying meds, but with a slow build up to a higher dose of sulfasalazine (6 a day), some steroid injections in problem shoulders plus 1 other injected to disperse for smaller joints, and generally not pushing myself/knowing my limits...well it seems to be bringing things back to a more acceptable level. It could be a higher sulfasalazine dose may just be of use to you if that's possible. I also wanted to say though, I left my very stressful job last year as I knew that it was definitely having a huge impact on my physical and mental health. I know not everyone can just up and leave a job, but adjustments at work could be possible, if you have a decent employer. I really wish you all the best as I totally understand.

[mellymellg in reply to Marz21]

Thanks - I'm a little overwhelmed by the amount of helpful & supportive comments on here.. I guess I'm kind of new to this kind of thing.. I've got to see how it goes with work.. as I do enjoy my job.. & they've been pretty supportive so far.. unfortunately I also had an accident last year (snapped my ACL) & had a lot of time off with a knee operation & physio & recovery.. & just after that I got my diagnosis of RA.. so with all the time off..I'm just mindful of it seeming like I'm taking the michael.. I've been talking about looking for a new job for a while so maybe that's something for this year..

[Rosie_rabbit]

Hello I'm sorry you're having a tough time. I really do feel for you as I'm in a very similar position too right now.

I was diagnosed last summer and started methotrexate in august. Since then I've now had a total of 4 intramuscular steroid injections. I have taken oral steroids in the past, but for me personally I find the injections are much better. I find with the injections I don't out on weight, it doesn't interfere as much with my sleep and when it wears off it does seem to be more gradual and so your less likely to rebound with your symptoms. However when you have steroids it does make you believe that your RA is managed and your symptoms may well be, but the disease isn't under control. The side effects of long term steroid use are very significant so this is why they use it cautiously.

Also, like you, my dmard isn't working and I'm back to my consultant tomorrow. I fully expect him to add another dmard into the mix and I will also be asking for some anti inflammatories as I'm struggling to find one to suit me. It does seem that for some it takes patience and time to find the right drug combination to control RA and in the meantime steroids do bring good relief.

I also have pretty full on and stressful job, plus 3 children and it is so hard to keep going, I did however last week finally stop and I'm taking some time off sick to give my body and the medications a chance to get this disease under control. It was a really hard decision and I've had some letting go issues, but I was running myself into the ground and I think I will never get my health sorted if I don't stop.

Lastly, sleep for me is a real trigger to make my RA flare. Making sure that my sleep pattern doesn't become disrupted is something I work really hard at and there's lots of useful info around to help with this. If I have 2 bad nights then I really try to nip it in the bud and stop it becoming a pattern. I know this is really hard, particularly with a stressful job and the pain of this condition. There are all sorts of drugs that your gp can prescribe to help with sleep and I've tried a couple of them but strangely I actually found Nytol to be the most effective for me!!!

Anyway, good luck and let us know how you get on when you speak to the hospital. Rosie x

[mellymellg in reply to Rosie_rabbit]

Hey Rosie, thanks so much for your message.. I don't know how you do it.. 3 kids & this horrible condition.. that's tough... I'm seeing the docs on Monday.. so will hopefully be able to discuss my options. I'm rather overwhelmed by the support here.. it's really wonderful.. How did it go at the hospital? M x

[Rosie_rabbit in reply to mellymellg]

Hi M, yes this site is so great, everyone is so supportive and funny!! How are you feeling now?

Thanks for thinking of me and asking how I got on. I did get a bit of a surprise to be honest as they offered me drugs trial!! I have posted on it if you want to have a look, it's really interesting and I think promising for all of us.

I really hope you soon feel better, and stay with us on here. Rx

[Hidden]

Hi mellymellg,

Sorry to hear you are having a tough time with your RA at the moment. Do call our helpline team if you want to get some information and support on 0800 298 7650. Our website might also help nras.org.uk

Take care,

Ruth Grosart

NRAS Digital Media Coordinator

[Annielou]

It sounds from your post as though you were prescribed steroids rather than the usual combination of DMARDs, (methotrexate, hydroxychloroqyine etc)? My rheumatologist is very extremely reluctant to prescribe steroids. I did have a steroid (kenalog) injection in December as am currently waiting to start Cimzia and whilst I felt brilliant for a few weeks, I have ended up making my foot tendons very inflamed because I've done too much walking during those few weeks of relief. Now the steroid has worn off, the pain is back with a vengeance. It sounds as though you need to have a consultation asap. Good luck and hope you feel better soon.

[mellymellg in reply to Annielou]

HI Annielou, I'm only on a very low dose.. but they really do seem to help.. I'm pretty new to all of this.. so I think they're still trying to find the right mix to get me straight.. I've managed to get an appt on Monday.. so hopefully I can try something else.. thanks for your message..

[Annielou in reply to mellymellg]

Best of luck on Monday. It can be frustrating as the consultants (rightly) tend not to dole out new meds or treatments lightly and there can be lengthy waits for appointments, injections, scans etc (at least in my hospital there has been!). My motto though is to pester, peste, pester if you have to and read up as much as possible about RA so that you can have informed discussions with your healthcare professionals. By the way, just glanced at another reply of yours above and I regularly have some wine at the weekend and am on 20 mg methotrexate weekly. I have learned not to have too much as it makes me very sick but a glass of good red wine goes down a treat! No problems with my liver or bloods yet, touch wood. I'm certainly not advising you to drink but just letting you know a little of what you enjoy doesn't have to stop. Best wishes.

[MarshaM]

I feel your pain. Was diagnosed in June of last yr and most all joints are affected. Am on plaqinel, doxycycline, and just added methotrexate last week. No relief yet. Not taking any steroids. When inflammation gets bad and can't move I take ibuprofen (400mg) and it masks the pain for about 20 hrs. But for sleep I take melatonin and I sleep soundly. I know it doesn't work for everyone but I take 1 about 2 hrs before bed time and I start to get sleepy couple hrs later. If I forgot to take it early its difficult to fall asleep and if I take it too late it doesn't kick in very fast.

[mellymellg in reply to MarshaM]

Hi Marsha.. You poor thing.. I've got an appt with the clinic on Monday.. so hopefully they'll be able to tweak my meds & I can get off the steroids.. they do work for me though.. but I've seen the damage they can do as my Mum has been on them for years.. I hope the meds start working for you soon.. although they say they need to build up.. where did you manage to get the melatonin.. I didn't think you could get it in the UK.. sounds like a winner..

[Hidden]

As others have said, long-term steroid use isn't the most sustainable way to do things. I would have thought that your rheumy will be thinking about tweaking your DMARD therapy (though this is just 'thoughts', I know that giving medical advice is a no-no here, especially as we all respond differently.) My strong impression is that the DMARDs can be very good drugs, well-tolerated by many, and that, if they don't control your RA well enough, then Biologics are often the next possibility.

[LucyLocket42]

I too feel your pain mellymellg and everyone. Although I feel sad that so many of you are suffering I have taken enormous strength from this group since I joined so just wanted to say thank you to you all.

Like mellymellg I was diagnosed with RA last summer, although it had taken quite a while to get a diagnosis. I take Arcoxia which really helps me. I have bad reactions to steroids so don't have any of those injections any more. I am also currently taking methotrexate, sulfasalazine and omeprazole. I initially tried hydroxycholoroquine but had to stop as the side effects were unbearable. I can't say any of the DMARDs so far have helped me at all. The MTX in particular drags me down and makes me feel very ill though I have continued to take it (so far). Last week at my appointment my DAS was sky high so I am due to start Enbrel injections in the next couple of weeks. I'm dreading them - but also can't help but hope that I might get my life back if they work. Here's hoping!

[mellymellg in reply to LucyLocket42]

Oh Lucy.. you poor thing.. I don't think my RA is not as bad as most other peoples, I feel I'm one of the luckier ones..but I'm also scared that it will get worse.. I'm able to walk & the pain isn't too horrendous, now I'm on drugs.. but before I was really, really active.. last year I had a skiing accident & then a knee opp then shortly after came my diagnosis of RA.. it wasn't my best every year.. the sleep & just generally feeling like I'm coming down with the flu is wearing enough..& sulfasalasine does seem to have improved things.. but as people have been saying it could well have just been the steroids.. when I hear other peoples experiences it puts it all into perspective.. and I feel like I've got absolutely nothing to moan about.. what is Arcorixa I've never heard of that.. my heart goes out to you x

[rheumatoidymummy]

Hi Mellymellg,

I was having a lot of trouble with sleep too - I have a high pressure job and two kids as well so this was the last thing I needed. My Rheum prescribed Amitriptyline which has made a huge difference to my ability to stay asleep once asleep. It's an anti depressant but at the lose dose I take acts as an analgesic sedative so it helps me to sleep while relieving troublesome shoulder aching at night time making more comfortable for sleep - the best thing is it is not addictive as some other sleeping tablets can be which greatly helped my 'do I take it or not' decision.

Not getting enough sleep makes my symptoms worse, as does stress and of course not sleeping properly is itself stressful!

I hope you get some relief soon.

Ju x

[mellymellg in reply to rheumatoidymummy]

Hey Ju, I have to say I'm so amazed at the support on here.. it's really lovely.. It's that waking up & being in pain & then things fizzing (do you get that?) which is a killer.. the last few days have actually been better.. but before I started taking my meds.. I was literally a walking zombie, about 3hrs sleep a night.. I started going to an acupuncturist too which seemed to help(but not sure if that was the medication starting to work?).. I guess I'm just scared of things getting as bad as they were.. but I suppose I just need to take a deep breath & take it one day (or night) at a time.. I'll note down the amitriptyline though.. just in case.. thanks x

[JackyL]

Thanks. I was really fortunate that the cancer was caught early and was completely removed. I just have to have checks for the next 5 years.

It is awful waking up in the night with such pain. Far more difficult to cope with. Could you not be given stronger pain relief? I have taken Lodine (Etodalec) for the last 6 years. Its a strong slow release pain killer and helps me get through the night. Im sure that if you do go back on steroids it will be carefully monitored. Take care Jx

[Zoopy]

Hi mellymellg. Sorry to hear about your flare up; that sucks. We wondered if you might find any of our info helpful on arthursplace.co.uk. We are a digital magazine and network for younger people with arthritis, and we focus on lifestyle advice. You might find us a good complement to the medical advice you are already getting, especially as you are just recently diagnosed. Hope you feel a little better soon!

[nevadawoods]

Hi mellymellg,

Steroids tend to hype you up, so that could be why you can't sleep, but then you said you aren't on them any more. I take a Benadryl with a prescription Ibuprofen at night and it helps me sleep. Sometimes I replace the Benadryl with Xanax. I find I can no longer sleep without some sort of sleep aid.

[craftygal]

Hi Mel, hope you are feeling better than last wk. did you have to resume taking your steroids again? Weather doesn't help us. Take care hon. Irene

[Rosi1213]

Yesterday was my last day on steroids....I was diagnosed 4 months ago, started with 5 a day for 5 days, then 4 a day for 4 days, etc..and then 1 a day until my dr apt and blood test. He then put me on 1 tab every other day for 2 weeks, then 1/2 tab for 2 weeks.....and yesterday was my last day, thank Goodness. Now I am only on MTX.. .6 liquid, which I squirt into juice, because I am a wuss about injections, and cant afford the pills. Don't know what to expect but I know I am always tired, and my neck, back and right shoulder are always hurting. I went to PT and now I do the xercises at home. I am so new to this, I just don't know what to expect.........we shall see!

[mellymellg in reply to Rosi1213]

Hi Rosi,

I've been off the steroids now for quite a few months & so far so good.. The docs upped my Salfasalzine dose, I think I'm on the max now.. All seems to be going OK.. minimal pain & am living an almost normal life.. I'm still in the process of getting my head around this disease almost a year on.. I think it's different for everyone.. but the one thing is there are a lot of people here who have encouraging stories & kind words & that goes a long way.. take care & let us know how you get on xx