What next?

So it's been 14 months since diagnosis. 14 months of getting absolutely nowhere. Methotrexate made me unbelievably sick, sulpha didn't work, allergic reaction to rituximab and toxi(something or other by infusion I can't remember!!!!!!!!!!!) and now leflonamide is doing absolutely nothing! I have arthritis in every joint and it is just getting steadily worse. This last week I have been so fed up which just isn't like me but there just doesn't seem to be a light at the end of the tunnel. Anyone out there been in this position and can offer me some hope please?

18 Replies

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  • So sorry to hear your struggle. I've not been in your position since I tolerate drugs well, and can't imagine how awful it must be not to have found anything to help you. I'm not surprised you're fed up! I would be in the gutter.

    Anyway, I don't know how much you know about the different drugs for RA but maybe it would help give you a bit of hope to explain about them - as there are some different ones you haven't tried yet. The different groups of drugs do slightly different things, and unfortunately there's no way of telling which one will treat your type of RA apart from trial and error. You've tried/are trying the traditional disease modifiers (DMARDs such as MTX, sulpha & Lefluomide). There are a couple of others of those, like gold or Aziothine that your docs might get to eventually.

    The modern newer biologic drugs split into 4 groups which each target different bits of the immune system. So you've tried Rituximab which is a B cell inhibitor, and Tocilizumbab which is Il-6 type. Most people start with anti-TNF inhibitors (Humira, Cimzia, Enbrel, Simponi or Remicade) and some find them brilliant - so strange that you haven't been offered any of these? And then the 4th group is the T-cell inhibitor called Abatacept. Plus new ones are being developed all the time.

    So although it must be hugely frustrating not to have found something that works yet, there is more to try. I really hope that one of these is the magic one for you.

  • Sorry to hear about your struggles with getting the right treatment for you, I think maybe your best option next is to try with Etanercept (Enbrel).

    It worked for me, no side effects except a dull head the day after injection, I went from popping Co-codamol like smarties to zero and pain free, good luck.

  • Thank you, it helps a lot to know there is so much more to try. I was ok working up to the biologics as I was convinced they would be the answer. Knocked me a lot when I reacted badly to the infusions but I will keep on going. I think abatacept or Enbrel may be next. I have been having abnormal chest scans showing a lump during this process so this may be why I haven't been offered these. This is now clear so hopefully the wonder drug will be next

  • Oh I hope so. My fingers are crossed oases for you x

  • Hi speersy sorry you feeling do low. I had similar problems when I was diagnosed 10 yrs ago. Couldn't do meth our sulpha and injections gave me TB. Leflunomide is the only drug that doesn't affect my chest but don't work good on their own, so have been on that and steroids ever since. Off course there are side effects but you have to weigh up the good versus the bass. I now have control myself over my steroids with the ok from doc, but only go up to 10 mg if need to and don't go over that without letting him know. Not totally under control but better than not taking them. How this helps.

    GJ x

    Ps excuse spelling predictive txt😒 x

  • Thank you, it helps to know I will get there in the end x

  • Hi speedy

    Sorry u haven't found 'the one' yet. This happened to me too and eventually did well on ritux.

    Like helix says there are more drugs so that's good. I have a few friends that have run out of drugs so don't despair.

    Also worth thinking about is your lifestyle. Drugs can help so far but RA is also affected by stress, exercise and diet.

    Are you getting plenty of fruit and veg, water, healthy fats, do you exercise? How are your stress levels?

    I've turned to diet to help my RA and I feel better, sleep better since I adopted it.

    thepaleomom.com/the-paleo-a...

    Might be worth looking into it?

    Take care

    Kiki

  • Thanks. I will keep positive about the drugs and keep smiling. I eat healthily and exercise 6 days a week and I am sure that really helps. Looking back I think I had RA about four years before diagnosis but I kept blaming it on sport (feet hurt from running, ankles and knees from running, shoulder and neck from rower and swimming). Wasn't until I had a big flare that I went to the GP. I swear healthy eating and exercise has slowed the progression and is vital to long term health. I can't run marathons any more but I can still exercise (just taking care to adapt what I do depend on how much I hurt and where). RA is not going to stop my fitness - ever!

  • Ada girl!

  • Hiya.

    Yes its that insanely positive guy again.

    I've only managed to get one dose of MTX down and then developed Optic Nerve Shingles. So, I can't take any more until that clears. I've been told to reduce my prednisone because that was too high a dose. SO overal, doesn't sound positive does it? BUT!.......

    I don't have to do the gardening - major plus (Couldn't any way because me hands are swollen right now)

    I don't have to watch Eastenders (Coudln't even tell you where the TV is at the moment)

    And I've got to meet with virtually every Dr in our medical center becuase they all find me "an interesting subject" so that was nice.

    Yes, i appreciate it's difficult, but you will get there, you got this far. Don't get own, get sorted. Best Wishes to you and yours.

    I might ad, apoliogies for spelling and grammar, but I am using a speech to text program on the computer to both read and reply (such is the life of a computer geek)

  • Thank you for making me smile. I won't give in. I have been positive all the way through this process. Just had a bad week but feeling a bit more upbeat again today. I will look for the positives too , especially not being able to cook, clean or iron x

  • Sorry to hear about your struggles with getting the right treatment for you, I think maybe your best option next is to try with Etanercept (Enbrel).

    It worked for me, no side effects except a dull head the day after injection, I went from popping Co-codamol like smarties to zero and pain free, good luck.

  • Thank you. A couple of others have suggested zen real so I am going to ask my Rheumy. Can't hurt to try!

  • Hi Speersy

    I have had all but two DMARDS and had varying adverse reactions to all of them expect Hydroxy, which I am still on. I have just started on enbrel and it has made a difference. I know because I had to come off it for three weeks and boy did I notice the difference. Maybe ask if that is on the table.

    I have multiple chemical allergies and cannot take a whole gamut of drugs including NSAIDS, any opiate based drugs, most antibiotics etc etc. So keep trying, it took 3 years and lots of adverse reactions for me to get enbrel so hang in there.

  • Hi Speersy,I've had RA for 16years,had all the following, humira, enbrel,rituximab(allergic reaction) abatacept,Amon to tocilizumab at the moment,but this is not working for me,2years down the line and I am in constant pain ,shoulders and hands being worst, I just wish I could have a pain free day,to feel normal,I feel so envious of people who can just jump up and do what I used to be able to do.i am also down at the moment,not like me ,but pain gets to you ,and no one understands what it's like.i hope you find a drug that works for you,I am hoping there is one for me also,and everyone else out there.

  • I can completely understand the pain you are in (mine is shoulders, wrists and feet) . It is so frustrating that no one can understand when we look so normal on the surface. Thank you for sharing your hope with me. I too hope for an end to my pain and yours x

  • My RA is now in remission and I only suffer from occasional niggles now, but it took several years and combinations of drugs to get to this stage. Hang in there, there is definitely hope that things will improve for you. :)

  • Thank you, I need to hold on to the hope it will all be ok in the end x

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