Combination Therapy for Arthritis

[Eve]

I had a brought forward rhumatology appointment this morning as my GP was worried about my joints and pain levels and my ESR had shot up.

My consultant said I need to go back on the sulfasalazine which I expected though was hoping for not such a high recommended dose (min 4 a day then up to 6 if possible) as I found it hard to tolerate even lower doses last time. She also said that, depending on how that goes, she is looking to try a combination therapy with methotrexate. I didn't know you could take those kinds of drugs together, thought one was bad enough but wondered if anyone had any experience of that kind of treatment?

I'm also a bit worried about the immune supressing side effects with my recent track record of skin infections, abcesses etc...

Consultant said my inflammation is very bad at present so I got stabbed in the bum with a cortisone shot so hoping that will kick in soon, they put three vials worth in so fingers crossed for a bit of relief soon :)

[bednobs]

hi jenna, sorry you are having a such a rubbish time. I have been on many combinations for arthritis. i had the combination above PLUS hydroxychloroquinine AND steroids.

I'm with you, sulphasalzine is foul isn't it? I couldn't tolerate methotrexate for very long (a year or so) but it is the most usual treatment i think.

My current combination is azathioprine and cyclosporine and prednisolone. I have also had antibody therapies - infliximab (monthly infusion) and entanercept (twice weekly injections) in the past which all worked really well (for a while)
my current combination is working ok for me, and my esr and crp are the lowest they have been i think ever. I am currently decreasing my steroids at an incredibly slow rate it seems. It's taken me 4 months to get down to 8 mg pd from 10mg pd

[bednobs]

oh, forgot i also had rituximab too at one point (infusion over 2 days a week apart)
I know i sound like a mum, but what really helped for me too was realising that work was not the be all and end all of things, and easing up on myself a bit. Working makes me feel normal, but i'm very careful about the amount of stress i let into m life from it. I also do my hours then come home and leave it behind. I don't know you but get the feeling that you don't do this? Eating properly is also important and i feel worse when i eat crap things. It's easy for me to say of course because i have my husband to pick up the slack at home if i'm tired or if i can't work for a bit, and again i'm not sure you do

[bednobs]

also, knowing when to ask for help is really important, or realising that you can't do everything. The dust will still be there tomorrow!

[bednobs]

christ, you think i could get it all in one post wouldn't you? lol. I have never had an overt problem with infections on these drugs like you have despite the white cells going down at times

[Eve]

Thanks bednobs, I hoped you'd see this. I should have gone back a lot sooner than I did and not just let myself struggle with it getting harder and harder. I just feel so useless sometimes and just stress and beat myself up all the time about stuff. I knew things were bad but it hit home a bit more when I saw how my consultant viewed it.

You are so right about work. I always seem to put it before my own health and sanity to a degree where frieds and family had admitted how worried it's got them. I've been badly affected work wise due to the recession and ended up temping and have now been taken on properly. It's hugely difference to what I had been doing, very junior and over half my former salary which has been very hard going to adjust to and get by on but it's a lovely place to work, decent set hours per week with flexi time, a huge difference!

I was working ridiculous hours before in stressful high pressure environments where you don't do ill. I know friends and family had got really worried but I just kept pushing myself. I look back now and really wonder how much of it was worth it.

It's a bit like enforced rehab and as it's public sector I've had my first Occupational Health assessment ever and it's quite a revelation to have that sense of being looked after and having a job I can leave in the office at the end of the day.

I'm a beggar for not taking time off/out, in fact tomorrow is the first day's holiday I've taken since I started this job in February and if I didn't have something on I wouldn't have taken that off. Another factor is that I've sold them back to help financially but hopefully things will improve in that department.

I don't take the Fosters but I know that I can bring things up if I need to like getting a wrist rest, OH saying I should take regular movement breaks etc... My manager makes sure I know I can speak to him and get help if I'm having a bad day, me being me I don't tend to but knowing I can is good, it's a start knowing I can be open about things and get help rather than trying to hide it :).

I stress myself out ridiculously over things like my house and garden, it's just a constant niggle for me and something I need to work on badly. Hopefully when things are a bit better financially I'll move somewhere more manageable or at least be able to get more help with things. It's just me and the cats so it's all on me and I'm at the point now where, if I had the money I'd definitely pay for some help.

I am getting better at asking for (and actually accepting) help, depending on what it is, though still a long way to go. I was chatting with a friend about this earlier at the pub in fact and have now spoken about it with my mum a few times recently. So much help is there, it's just me getting me to actually take it forwards and accept it and organise it.

I am rubbish at looking after myself and am often so exhausted in the evenings I don't bother much with eating properly, more cheap and convenient so I can get crashed on the sofa sooner. Similarly getting up and out, I get up and out with minimal effort (though always shower and wash my hair) and then it gets me down how I look so much less like I've made an effort than I used to when I'd do my hair nice, put more make up on, dress up more etc... I have fantastic friends and try and save some energy for getting out and seeing them, again at the expense of other things which then stresses me out.

I'm not sure what's with the infections, they aren't connected to the drugs as had them before and when off them as well, just worried it will make them worse.

I noticed this morning my rhumatology dept are doing sessions where you can go and listen to presentations, speak to the nurses and physios, get more info on the condition, treatments etc... I'm hoping to get signed up on one of those and it'd be nice to meet others, especially people of a similar age with simlar problems, think it'd do me good.

[Eve]

Whoa! That was so much longer than I thought it was!

[bednobs]

i'm really glad that you've got an understanding boss - it makes all the difference. I'm also glad (in a way) that you can look back and doubt all the effort you put in was worth it - it's a step to realising that other things are more important.
i've had those steroid bum injections before too. At least steroids make a difference more quickly than the other things, although the injections have never made as much of a difference as i would like them too. When i was first diagnosed thirteen years ago, it was fairly standard practice to get steroid "pulses" (i.v infusions) to try and capture and get under control run away esr's. Unfortunately, i now have osteoporosis owing to how many i had to have. I don't think my illness has ever been under control as such ever since I've had it and unfortunately i have the deformities (especially hands) and scars (from joint replacements) that go with it! have you ever heard of the expert patient programme?

[Eve]

It has been, despite the stress, a steep learning curve and one I definitely needed. I'd been on a definite career path and probably wouldn't have deviated from it any time soon if not for circumstances forcing my hand.

I've not heard of the expert patient programme, I will have a google. I do like the idea of the patient information mornings my rhumatology department are doing.

Deformities and scars sound awful :( I'm quite lucky so far as although my feet are inflamed and get marks and bruising, it's just a battered look rather than any deformity. Did yours come on more gradually or was it quite a sudden thing, if you don't mind me asking?

I think that is my biggest worry now, what the future might hold. I think it's sunk in a bit it's not just going to go away and how it's been affecting more and more day to day life rather than the initial more affecting activities I used to do. I used to be a very active person but I found other things to do or joined in in different ways. It's the day to day stuff which is stressing me out more, especially being on my own.

I had a bit of a teary moment on my own waiting for the nurse to come back with the injection then made myself pull myself together before she came back.

Am wondering if the injection is yet to kick in yet (as per my later post), some of the swelling has gone down and the bad bits of me are a bit less hot and angry.

I've been getting strange stingy pains where the inflammation is bad - been driving me mad last night and today, must have looked an interesting sight at work keeping on rubbing where it was niggling, especially over my hips!

I'm wondering if that is the drug working on reducing the inflammation. Think I might have got a bit overexcited about how much of a difference it might make but even if it just uninflamed things back to more normal and makes it more comfortable to get around then that'd be good :)

[bednobs]

hi again jenna - i have never had what you describe after a steroid bum injection, but as indicated above, i've never found they make a huge difference to how i'm feeling (although they do seem to impact on my esr)
My whole thirties have gone by in a blur and if i'm honest, i can't remember having a good time ever in them - for several years i couldn't go out, struggled to go to work etc found it difficult to drive. I had to change my career (from a nurse) and couldn't even stand to wash up or make tea. Either that or i was dreading, having or recovering from a joint replacement!
I wanted to get pregnant but the high inflammation prevented it, then i changed medications did, and you probably have seen from my posts what happened to both my daughter and son.
Anyway, now i'm 37 and both my hips and knees have been replaced and i'm at last able to take part in social life and home life a bit more (and also thanks to my combination of therapies). I am hoping my late thirties and beyond is going to be a bit better!

[Eve]

I just really can't imagine, you've been through so much, I really hope you can get more of your life back, makes my moanings seem so trivial.

I've finally got a bit of relief with the cortisone, marked decrease in the inflammation (I can see my ankle bones properly for the first time in a while) and things are definitely a bit more comfortable. It was quite a revelation to get out of work and not feel so battered! It's also strange to realise how tentative I've become on my joints.

Had some more good news too. I'd asked my GP a couple of months back about a different drug for my bile acid malabsorption as the current powder sachets I had (mix with a drink and have before each time I eat) were such a faff and I had a lot of pain after taking some so much so I stopped them. Without them, apart from the nasty main symptoms I seem to get a lot more bone pain (have a Vit D deficiency), especially in my pelvis and crave food as I feel empty and don't seem to be able to absorb certain vitamins and such properly. I found a tablet form version on the net and she wrote to my gastro consulant who said it's not licensed but it's pretty much the same thing so I can try it, they just had to warn about it being not licenced for my condition etc...

Even just a couple of days and I have more energy and feel so much better than I did, it's quite a difference and my skin and nails and such tend to improve massively once it settles in and I don't feel so hungry so much. So
it's been a pretty good week for getting some health things sorted.

Had a good chat with my manager yesterday and got another new work chair with a high back which is great as it supports my back better and doesn't sit just under my swollen shoulderblades irritating them.

I had a look at the courses and there are some near me though in outerlying areas and in work time but definitely something I will look into. I'm hoping to get on one of the patient education mornings and have a good chat with the nurses and hopefully look at more lifestyle based issues (than medical etc... with the consultant) and will ask them about that too and mention it to my manager, see if I could sort something with flexitime.

Thank you so much for listening and your advice, I know I'm nowhere near as affected as you are but it really makes a difference to be able to speak to someone who has an idea about how I'm feeling, I really do appreciate it.