How long before my RA is under control??

[SARAHG]

I have been taking Methotrexate for 5 months and Sulfasalazine for 5 weeks. I was diagnosed with RA in November last year after having symptoms, on and off, for 2 years. I have had 3 lots of steroids since then and my hands are not as painful every day as they were. I take Diclofenac modified release which I think is helping me more than anything else as well as Amitriptiline, Co-codamol and tramadol. I am now experiencing everything randomly as I was before it got severe last year. Pain and swelling moving from joint to joint and having one night per week when it is so unbearable I don't know what do do with myself and feel like I'm in hell!! My hands flare more than anywhere else but last night it was my knee and shoulder.....I couldn't walk this morning!! I feel very tired and depressed and am struggling to hold down my job, keep on top of the housework and be patient with my partner and 2 teenagers. HELP PLEASE!!

[helixhelix]

Oh dear, it sounds as if the meds aren't doing their job for you! I presume that your rheumy put you on Sulpha because the MTX wasn't doing enough to control the RA. Trouble is that Sulpha also can take a few months to do it's thing, and docs would probably think 5 weeks not long enough. It one of the many things I hate about this disease that everything takes sooo long. I hate to tell you this, but it took me nearly a year to get the RA back in it's box and needed 3 DMARDS to do so. But you sound worse on just the 2 than I was, so I'd call your rheumy and ask for an appointment as soon as possible to talk to them about trying something else alongside, or starting to do the assessment to change you on to biologics. I've found that you do need to keep pushing to get seen as otherwise the rheumy will assume all's well.

In the meantime all I can advise is the standard non-chemical care - wax baths, ice packs, rest & so on. Sorry! But loads of sympathy as it's truly horrid. I was at a point of despair, and then suddenly like magic everything started to work - so I hope this happens for you too v soon. But keep nagging until it does. Polly

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Hi Sarah - I was diagnosed same time as you but hadn't had the symptoms for quite as long. I have also been on MTX for 5 months and it seems to be working better than it is for you but I'm unwilling to try Sulpha again having had a bad reaction to it last year. I've just been raised to 17.5mgs of MTX, heading up for 20mgs - having found symptoms were returning and my inflammatory markers were high once more. I think Polly's right and it sounds as if you need new medicines because Sulpha and MTX are obviously not enough for you. It also sounds as if you are taking pretty strong pain medicines so you really do need to see the rheumy soon I would think.

Forget the housework while you're feeling like this or get the teenagers and your partner to help out more. I can't talk though - I have two teens and a dog at home and they do very little around the house (well apart from the dog who steels clothes out of the clothes bin and takes a shoe to play with and hides it!) But fortunately for me my OH is a domestic god!

With me the MTX did work at 15mgs for a while before the symptoms have crept slowly back. I'm not in huge amounts of pain as you describe as I was before starting the DMARDs - just low level pain constantly but that's getting me down too. I found the Sulpha worked quite well with my joints after about 3 weeks but I couldn't tolerate it in other ways.

When did you last see your rheumy or rheumy nurse and when is your next appointment? TT

[SARAHG]

Thanks for your answers. I have improved a bit as the day has gone on so apologies for the drama. I too have low level pain every day which is no way as bad as it was when I was diagnosed. The last big flare was in January and lasted for 3 days. I feel I may be flaring again. I only take Tramadol when the pain is really bad but Co-codamol most days all day. I have tried to stop taking the Diclofenac but even after a couple of days my hands get bad again.

My next appointment is with rheumy nurse beginning of next month. My bloods never reflect the pain or swelling and my CRP and ESR have never been high. They have said it could take a year to 18 months to get me under control.

It comes on so quickly....last week I'd been fine all day and then my hand starting swelling in the evening. Within an hour I had an egg sized lump at the base of my tendons. That night again was agony, as if I had broken it, then it calmed down over the next few days. I just wish I could get to a point where it settles down. I think all this is the reason I feel down and find it difficult to accept that I have RA. I can't face a lifetime of this or trust that they will make me better even if it is short term. SG x

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Hello Sarah, something about your reply just hit a nerve for me, maybe it was 'the thought of facing a lifetime feeling the way you are' and it being difficult to accept; it's the whole shock of our situation, it's so hard to come to terms with.

Anyway, mine took 10 months from diagnosis, failed 3 dmard's and started and anti-tnf which was a miracle for me and has been for 5 months now I won't waffle on but I have written a blog or 2 about it (if you are interested just click on my name and you'll find one called 'my positive blog'...

You will get there, the things others take for granted, I find myself smiling at the oddest moments, appreciating life like never before and not taking it for granted.

Hope your having a better day today xx

[muffin]

I have been down your road and it is not funny. I was in terrible pain for a year, I tried MXT but couldn't stand it either in tablet or injection form. I also was given hydroxicloriquine but really don't know how this helped. After a year of Hell I was given the anti tnf drug, Enbrel and I haven't looked back. I have had it for 7 years and I am completely in remission and have been for quite a few years now. I have been lucky as I have the most wonderful RA Consultant in the world and she understands me so well, and has given me my life back.

You will win in the end, but it does take time.

Muffin.

[SARAHG]

I'm sorry it's taken me so long to reply. I work full time and go to college once a week so life is too hectic to go on computer. I am so stressed out at the moment and I know that is making my RA worse. I want more than anything to have my life back. I seem to be getting worse not better. Nodules on my wrists are growing by the day and must be pressing on nerves which is keeping me awake despite taking 20mg amitriptiline. It does give me some hope hearing what you say but right now I feel like I am stuck in an awful nightmare.