How long is too long?

Hi, I'm just wondering if my progress is "normal", I'm getting quite frustrated and I need to get some perspective in how I am feeling.

I have been diagnosed about 3 months ago. Seronegative RA. I was give a depo injection of steroids, and put on 15mg of MTX a week, 15 mg folic acid a week, and 5 mg of Prednisolone daily. I started improving a bit and my blood levels started getting towards normal very slowly. I was on sick leave for 8 weeks, but by then I was starting to have more good days than bad days. When I started back at work, I only lasted four days. In theory I had a phased return to work, doing only 4 hours over the first week, and increasing them, but unfortunately, nobody really cared, and a meeting with Occupational Health was not organised for a while. Adding the hour and a half commute each way, left me totally exhausted even before getting to the office, so I had another relapse, probably from trying too much too soon.

It might also have been due to a stomach virus that got me out of action for a week, and now blood levels back to square one. I've been on sick leave now again for about another month. They have increased the MTX only a little bit (it gives me the weirdest side effects, with my mood,attention, energy and emotions like a roller coaster). And he has given me another depo of steroids, but over the last two weeks since that I still have a lot more bad days than good days and I am totally freaking out thinking about returning at work, as I am not feeling ready at all.

I am also struggling (as you do, I imagine) with a sense of guilt and doubt about what's going on, and about my own strength and sanity. On the good days I prep my self up to start back at work ASAP, then I have 4-5 bad days in a row and I don't know what to do.

Any advice?

9 Replies

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  • Yes, take it easy,it will take a while for the drs to get your dosage right. Don't feel guilty for being ill,you can't help it so put that away.You have only been diagnosed 3mths sometimes it can take up to a year. You are in a position where they are blasting you with drugs, so please give them time to do their job. Give work a serious thought and think if you can or need to work,perhaps change jobs where there is less stress.

    Have you applied for dla,you get this by contacting dwp. It is a regular payment to help your mobility. It is not related to any payments you get eg; income support or any other benefits.

    Hope this has been some help and lastly i will repeat myself here don't stress yourself over work and try to relax.

    Sylvi.xx

  • Sylvi, thank you for your reply. I do fluctuate between really trying not to worry too much about work yet, and trying to relax and follow how much (or how little) energy I have at a given moment, but inevitably I often swing back again towards worrying about having had so much sick leave already. It seems that the Zen attitude does not last long!

    Teresa

  • Poor you it sounds hellish - especially in relation to your work. What job do you do? If it's physically or mentally stressful and your work place don't seem to understand what you are going through then it's hardly surprising you are getting worked up about it - which in turn will not be helping your RA one bit.

    I have exactly the same side effects to MTX that you have and also always my liver results are on the very high side of normal or higher than normal and so I'm also stuck on 15mgs so far. I see my rheumy for only the second time since diagnosis 7 months ago this Tuesday on a video link and I think/ hope he will rethink my meds but as I'm currently on Hydroxichoraquine and 15mgs of MTX and my GP doesn't like the idea of my dosage rising I'm not sure what they will try next as I've already tried and reacted badly to Sulphasalazine. My bloods have come back even higher than they were when the RA kicked off and I've currently got a painful and swollen ankle, aching hips and wrists and fingers permenantly stiff and won't grip or clench. But that's just because I've been traveling and overdoing things.

    Because it's an autoimmune disease I think RA symptoms are very much related to stress and triggered by us overdoing things or getting in a pickle about everything. You need to contact your occupational health person and take some NRAS employment leaflets into your work place or get them sent to them while you're off as they, like many others, obviously haven't a clue what you are going through. If it was cancer everyone would know it was a big deal but with RA only those whose lives it has touched have any idea how serious it can be. Also you could phone the NRAS helpline on Monday and talk to someone - they are great and very informative. Good luck and take care. Tilda x

  • Hello,

    I know this isn't what you want to hear as I felt the same when I was first diagnosed, patience , it's going to take time. Sylvi and tilda are right and the advice and support they have given are heartfelt. Come and talk as much as you need to, try not to despair they will sort you soon x

  • Hello, Hobbles. Thank you for the reply. I do get frustrated and (very) worried some of the time. I also practice meditation and gratitude, and I also often manage to hold on to patience for good stretches of the way. It seems that other people around me struggle with patience more than I do: my boss, the Occ Health people, even my GP and my consultant. The latter keeps telling me I am doing well, and that I am in remission, because on the last wo visits my hands were not swollen or painful. However, a mere few hours before (and after) seeing him, I was puffy and in moderate pain, then several days in a row in severe pain and extreme fatigue. This does not feel like remission to me!

    I know, more patience!

    Thanks for chatting.

  • Hi Teresa, I don't want to depress you but what you describe sounds v like how I was way back when. I'm also sero-neg and started on MTX with good results, so was getting v excited that I was heading back to normal, but then a month or so later things slowly started going backwards. To cut long story a bit shorter, I was up & down for at least a year while doses were increased and 2 more DMARDS added in. All the time the number of good days was slowly increasing, but never got away from having bad days, and the truly horrible, shattered days. So do sympathise with the horrible frustration of it all - and the crushing disappointment when you've had a spell of things going well and then wake up to the evil aches again. I'm now doing pretty well, and can do most stuff most of the time, and although not completely stable yet the good times last a whole heap longer (or until i do something daft and overdo things). Looking back I think my turning point was when I really started to build up a new way of living, rather than trying to get back to the pre-RA me. And i started puxtting my health first, rather than work, and tried to squash the guilty feelings. As Tilda says, getting into mental and physical pickles doesn't help so I think your efforts on zen like states are v sensible. The other thing that really helped me was recording the changes so I could see that things were getting better. I'm a visual person, so made myself some little flip books of a skeleton And I drew red dots for pain/swelling/etc each day or week so could then flip the books and see how he amount of red was slowly reducing. And that helped me learn how to be patient....sort of.

    But the other thing is that tho' I love the pain holiday of steroid jabs, I do find that steroids do give me weird mood effects. So could be that as well as the MTX that's changing your emotions. But really, really don't go back to work until you're ready. A few more weeks is nothing compared to helping the rest of your life. This is a big disease to come to terms with, not just a sniffle. So patience.... Pollyx

  • I thought you were telling my story! I to love steroid injections the only down side is I can cry so easily and it's put the bp up again. I wanted to get to 'me' but realise that this is me RA and all, so get over it I tell myself. on the plus side this blog site is great and so supportive, I now realise that what I suffer is no different to everyone else, I had a great day yesterday in the sun now its raining and it's making all the difference to how I feel. Smile and Be Happy! but don't lock your jaw as I did last week and couldn't chew for 5 days. Love Caggy

  • Hi, Polly. Many thanks for taking the time to reply. Your words resonate a lot with my inner musings. When you say: "Looking back I think my turning point was when I really started to build up a new way of living, rather than trying to get back to the pre-RA me. And I started puxtting my health first, rather than work, and tried to squash the guilty feelings".

    I have found your words real food for thought. They are so wise, and so encouraging. I know there will be life after RA, and I am naturally a positive person. It is just the understandable fear of the unknown, and the very human tendency to imagine catastrophic outcomes. To face constructive change, I know I have to turn this illness into a real journey of discovery. I work in a helping profession, and that is typically who I am, always there for others, always listening, always wanting to help. Always putting my own needs second. It has always been even a question of identity. I am THE HELPER. But now the helper needs help. This is totally paradoxical and hard to stomach. A huge chunk of who I am (and what I am !) needs to be reassessed. Is that so really frightening? Is it the end of the world? I have recently discovered the humbling experience of having o ask for help to get dressed, get out of e bath, cut my food on he plate or pull my socks up. And there is some hidden grace in learning to accept help with gratitude and without shame.

    I still hope I will be able to grow from this.......

    And as you say, perhaps even to find a better me that can accept help as much as I can still give it o others.

    Many many thanks for our words. They have made me think positively again, and I feel better for that. Work is not the most important thing in the world.

    Teresa

  • Yes, I'm a different me than I was before. I'm much calmer, which has also made me appreciate small stuff - like taking the time to exchange a couple of sentences with people in the bus queue. I think there are many different ways of being a helper, and you'll find another way that doesn't need you to be on tip top physical form.

    Before I was always in too much of a rush, busy multi-tasking and using every spare second to do something that was supposedly important. So it's been interesting learning a whole new life. And I've also learnt to let things go, so what if there's a bit of dust around, or a few extra creases in my clothes. And tho' I'd ditch the RA in a second if I had the choice, I'm not sure that i'd go back to the old me. Hmmm I need to think about that...... Px

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