What should I expect?

Hi Everyone,

I really don't know what to expect once meds kick in (still waiting!). I know I may have to try a few and each one takes months to work so it might be a long process to see what suits me but once I have a "perfect" med for me what does this really mean?

Is it total pain / fatigue relief every day and whatever a "normal life" is

Or

Some sort of reminder daily / weekly / monthly that I have RA

Or

A daily struggle with RA to varying degrees

Or

No one knows because we are all different!

I am very annoyingly someone who likes to know everything and what to expect!

Hope you all had a good Christmas 🎄

10 Replies

oldestnewest
  • I was lucky because they told me the Humira might take 3 months to work fully, but after 2-3 weeks the swelling and pain had cleared up. I hope you areas lucky. Better to be born lucky than rich, I think!

  • Almost bound to be one of those!

    If you look at the posts on here most of them are from the people having problems currently. So you do get a biased view that most people are struggling - but most people are coping either in remission on treatment, or manageable pain and no progression, or sometimes even remission on no treatment.

  • Yes it's a frustrating condition in that you just don't know how it will affect you. I would imagine most people settle on a drug regime and are pretty well ok. It took a year for mine to settle and it was worrying, I started to think nothing would work for me ...... But we got there.

    Now I am mostly pain free. Probably every few weeks it reminds me it's still around and I'll have a day or two with a joint playing up a little.....nothing like it was before.

    I am still a little more tired than I used to be, but other than that I'm as I was before ....yeah.....hope you find something that works as well for you.

  • A dear friend of my was diagnosed, put on methotrexate, and has been absolutely fine since. I've not been that lucky as yet.

    We are all very very different.

  • Well, I was fast tracked to a rheumy. Was checked over etc then offered a steroid injection - I asked for pills, I take other stuff on a daily basis so I comply well.

    I gott he three month course of steroids titrated down and the idea was that if the steroids worked I would start on hydroxychloroquine. I didn't quite get the timing right and it wasn't until I got a copy of the rheumy' letter to my GP that I realised I ought to have started the hydroxychloroquine as soon as i noticed an improvement so I trotted down to the doc and got started.

    It took a bit for the hydroxy to kick in so there was a little gap between finishing the steroids and being totally pain free but it wasn't a patch n what I felt like before.

    The steroids made me feel like WonderWoman! I could have done anything I felt so good. All the muscular pain I was getting round my shoulder and neck just went and hasn't come back. The weirdest thing was not to be in pain aftersuch a long time. I used to waken in the morning feeling like a truck had run me over then reversed back to do it again just for luck. All that pain stopped and gradually so did the pain in my hands.

    I've been taking the hydroxy for a year now and things are pretty good although I had strange hand pain start a few weeks ago. Think it might be tendonitis but I skipped the doctor and tried ice, rest and a splint at night and it seems to all have settled down again.

    There's nothing annoying about someone who wants to know all about their condition and what to expect. I can't understand people who don't. I know people who just do as they are told without ever questioning their treatment or as is most often the case - their lack of treatment! I can't understand them - equally I don't think they can understand me.

    Good luck with your treatment and keep asking questions and demanding your blood test results. 🎄

  • I think it really helps to decide that you are going to be in the "virtually normal" group and push to get there. I kept on asking my rheumy whether this was as good as it gets, and pushing to see if there were tweaks that could be made to my drug regime. Which she responded to and we spent a year or more tinkering with drug doses until I got to a pretty stable and normal state. Won't work for everyone, but do start with positive mindset.

    I can't remember the statistics, but that is where the majority of people get to so believe that you'll be one of them. It's a spectrum, and at the top end there are a very small percentage of people who have an evil, evil, RA that is aggressive and hugely damaging. Equally at the other end there are some where it becomes unoticeable, and drugs can be stopped. For the rest it is controlled to a greater or lesser degree.

    There are also the things you can do to help yourself - it is a joint effort to get this under control. These days as long as take my drugs and stick within my limits then I can forget about having RA for days at a time. I do get more tired more quickly than normal people, and can't push myself as hard as I used to. So I exercise daily, but don't go over the top. I eat properly, but if I really want something bad then that's ok every now and then. And I make sure I sleep at least 8 hours. And I do drink 2 or 3 nights a week now, but never more than 2 glasses. So a life that is not quite the same normal as it used to be, but not far off.

  • There is no 'correct ' answer......I think that trying to manage it the best you can, personally and with rheumy...

    ....I spent years suffering on dmards , then was put on biologic and was fine for 10 years......then flared up again and changing medication again......as said before everyone is different.

    .....it's a comfort finding out what happens to others tho and getting other people's opinions.....keep talking to people.......honestly I have had so much good advice from people on this site ( I have only been on it for 2 months. Wish I had joined earlier!! ) good luck to u

  • In the words of QI.... nobody knows! Sorry, bit silly but we're all different & so is our response to meds. How well we are or how well we become controlled is also difficult to predict as RD throws us curveballs even when we're doing well.

    I was fortunate & diagnosed very quickly after my GP recognised the first signs & I responded well to treatment in the first year. Things started going awry when my hydroxychloroquine started failing, it couldn't be increased so methotrexate was prescribed. I had a difficult couple of months where I didn't seem to be getting anywhere until I saw my Consultant again & he decided to stop my HCQ & my MTX quickly started working. Save for the odd course of steroids I did really well for 4 years then we had to return to the UK & I had 3 months off all my meds waiting for an appointment with a Rheumy to represcribe my meds, the inevitable happened, huge flare. Since then I've never really got back to the good 4 years I had, my Rheumy prefers to call me reasonably well controlled. My DAS score always puts me in the low disease group but with feet & ankles not included it's not a reliable or realistic score in my case. This was proven when after 2 years of asking my Rheumy examined them but the damage was done, I'd had disease activity in them for too long. She increased my MTX but it was a bit of after the horse has bolted, maybe had they been included in the DAS, as they had been when I'd had the DAS 44 performed, the dose may have been increased earlier & I'd have fewer problems but there you go.

    Of course remission is the goal, or clinical remission at least but the disease can change course & out of remission we come. It is possible but not as frequent as it could be I don't think. The thing is RD is tricky & the nearer we get to knowing exactly how RD works the better for us. With hope we're nearer to a cure but til then I think it's best to do all you can to help yourself. Exercise, eat well, take your meds, don't punish yourself if things aren't going well & have a good relationship with your Rheumy then hopefully you'll not go far wrong.

  • I can only share my own experience. I was given 2 steroid injections to start with, then I was given oral steroid, mtx, prednisolone and pain killer to take home. When mtx started to work on me after about 4 months, I was told to stop prednisolone slowly. Then I was given leflunomide after about a year treatment. My rheumy said that would speed up my recovery process.

    I started to get very much better about 10 months after the treatment without leflunomide. That was when I felt more balance in walking around and with tolerable pain. The swell went off too around this time. Generally the pain and swell went off slowly each day each time the dosage of mtx was increased and I was looking forward to get the increase of mtx because I could really feel the great improvement with that.

    I was very much back to my normal life after about a year treatment but I still could not sit on the floor and squat down easily yet. I was working hard on that daily and I never stopped to do my daily exercise to ensure my joints were flexible.

    I finally could sit on the floor and could squat down easily in another month or 2. I never failed to put myself on more difficult exercises and I finally could do basic yoga as normal. My rheumy finally declared that I was in remission after about 2 years of treatment.

    Though I am very much back to normal now, but I can still feel the different in my joints when I move them. I believe I can improve further and I am working closely with my rheumy to achieve that.

    Most importantly, I keep a record of my blood works, a record of what I eat that make me flare up though my rheumy said RA had nothing to do with food but many patients does feel certain food does make them feel more painful. Also I keep a record on how I feel especially when there is a flare and a record of the medication I take and pen down a list of questions I want to ask, each time I have one in mind, before my next appointment. All these records come very handy when I visit my rheumy and the blood works give me a good information of my own performance.

    Exercise becomes my daily routine and I feel good doing that. This also put me back into shape after about a year of treatment. I had muscles wastage at the first few months after I was diagnosed of RA because it was too painful to move my hands and legs and I was left with only 38 kgs. However, I started my daily exercises after about 4 months when mtx kicked in. I started with very simple movement to the level of pain I could tolerate. I slowly tested if I could do more difficult exercises and I improved each week from there. Today, I am doing the basic yoga daily without any problem and I am back to my normal weight.

  • Thank you all so much - I will take on the hints and tips, do what I can to help me most.

    And after that I guess I am winging it and hoping for the best and I will try my best not to be frustrated at not being completely in control! 😃 Oh and I will keep reading stuff on here - you guys are great x

You may also like...