RA at 22 -- Plaquenil, Looking for Advice

Hello, all! I guess I'm just looking for some advice. I was diagnosed with RA this past spring. My wrists started to hurt and swell while I was waiting tables. My doctor suspected I had RA back in January and I was referred to a rheumatologist. I had to wait several months for an appointment and undergo another month or so of tests...

Long story short: I've been on plaquenil since June. I really haven't had any change in the severity of my symptoms, and I've been on it for 5 months. My rheumatologist says that it can take up to 6 months for this medicine to start working. Has anyone had any luck with plaquenil?

I'm reluctant to go on anything stronger, but I can feel the disease progressing, and it scares me. It started in my wrists, then spread into my fingers. Now I can feel it in my knees, and on off days, I can feel it slightly in my elbows. My hand is starting to turn to the right...I'm afraid my right hand/wrist will be deformed forever. I've heard that methotrexate works well, but the side effects frighten me.

Does anyone have any words of wisdom?

9 Replies

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  • Morning. I was diagnosed with rheumatoid arthritis 3 years ago when I was 31 and was put on plaquenil. It was ok but wasn't controlling my symptoms so after talking to my rheumy about options I was put on Sulphasalazine and am now in remission after having my daughter last year. I was amd still am reluctant to go on methotrexate until I have finished having babies, although people do. Sulphasalazine has been great although I am on the maximum dose. Worth talking to your rheumy about it. Methotrexate can be unpleasant to take but you will be well monitored on it. But Sulphasalazine certainly was the better option for me. Good luck x

  • Hi and welcome

    Sorry you have been diagnosed, but believe me you will find loads of help and support on this site. It's such a confusing time trying to get your head round it all......but you will, and there are some great treatments out there these days.

    I don't know the drug you are on, but have been on mtx and another Dmard.

    Lots of people come on this site worrying about the side effects of mtx and other drugs we take, but as you will see many people saying, the effects of uncontrolled ra are far worse than any side effects you may or may not get.

    Mtx was my first Dmard and I am on the highest dose, apart from feeling a little yuck initially, I now have no problems with it and although it hasn't done enough for me, I've read loads of posts from people saying it's worked great for them.

    All the drugs seem to take a while to get into your system and work, but my understanding is to treat this quite aggressively at the start to try and get it controlled and prevent future joint damage.

    Hardly "pearls of wisdom" but if it were me I'd be thinking seriously about getting onto mtx if you are not feeling benefit of plaq and mtx has been offered.

    Were you given a rheumy helpline number? If so perhaps you could call them for a chat about your concerns?

    Try and remain positive, you will feel better once you find the best drug or drug combo for you x

  • Plaq and MTX didn't seem to be working for me for the first 5 mos either but my rheumy drew 20cc fluid off my knee and gave it a steroid shot which took all the inflammation down in 24hrs and put me on prednisone for 30 days and after that inflammation never came back and the meds kicked in and started working once the inflammation was gone. I could barely walk and my hands and wrists were so painfully swollen it was hard to function. I've been playing tennis and have my life back for the last 7 mos. You have to find a pain management med until the plaq builds up enough to help. Good luck.

  • This is a hugely variable disease, and as others have already said some people do fine just on Plaquinil and others need more. Maybe it'll be fine for you with a bit more time but if your hands are starting to drift then I would start pushing now to have your meds reviewed.

    If you start on stronger drugs and don't like them you can always stop them again, but once a joint is deformed then there's no reversal. I take 3 DMARDS - MTX, Hydroxy (plaquenil) and Sulpha and don't really have side effects from any of them, and they work very well for me as my disease is pretty well controlled. Since you're so young and may be wanting to think about children you need to talk to the rheumy about that too (or very reliable contraception) as it will affect the choice of drugs. But really the disease is worse than the drugs so please don't delay if you're seeing changes in your joints.

  • Hello,

    I'm 22 and have been diagnosed for just over a year! It started in my hands and wrists and now it has slowly started in my feet (even got a lump on my toe) my elbows (stuck out now) knees and even pain in my hip. I was started on sulfa and it didn't really help at all just these past two weeks i've started on mtx aswell as sulfa and folic acid! I hope everything turns around for you!

    If you ever need to talk just message me :)

  • Hiya NeelySparkle & welcome to us here. I was diagnosed abroad in 2008 & hydroxychloroquine was the first DMARD I was prescribed but along with a corticosteroid, celecoxib & pain relief so I had pretty immediate relief due to the other meds. That when the steroids were tapered the HCQ worked well for about a year so then methotrexate was introduced as double therapy. That was ok for a while but my Consultant wasn't completely happy so HCQ was discontinued & I've now been taking MTX as my only DMARD, along with low dose steroids, etoricoxib, co-codamol etc for 5 years now & my RD is according to the DAS28, low disease activity though my Rheumy prefers to consider me controlled.

    The meds we need in an an effort to stop our body attacking itself all come with side effects unfortunately but then so does paracetamol. It's not a given you'll experience any but it's by no means a soft med. To others they could be described as poisons but to us who need to take them they're nectar & the things that help prevent joint deformity & worse.

    The norm in the UK & Europe is to start MTX on tablets though it is also prescribed as a subcutaneous injection. I had some hair loss & nausea on tablets but only prescribed 5mg folic acid the day before & the day after taking it. I was changed to weekly injections & the symptoms improved but since taking the folic acid every day except the day I inject I find I'm just a little off my food & tired the day after but only the one day after, hardly an issue compared to when I had an enforced break for 3 months & spun out of control! Your Rheumy will probably take your young age & how aggressively he needs to treat your RD into consideration when deciding your med protocol but be sure to make him/her aware if you intend to start a family. We are well monitored whilst taking MTX, I have monthly bloods taken, so anything untoward can be reacted upon. I can tolerate 15mg, any more & my liver objects, proven when it was increased to 20mg but swiftly reduced back down to 15mg. I had a rise in neutrophils & white blood cell count a couple of months ago but this turned out to be an infection I'd had & my body had coped with it..... I wasn't even aware!

    Maybe an idea to keep to more reputable sites when researching. NRAS is an excellent reference nras.org.uk or if you wish to learn more about MTX & early treatment this may help you nras.org.uk/methotrexate-in... & nras.org.uk/the-management-...

    I hope you get lots of replies, many people on here have had great success on MTX & I hope you do too if it's considered the right way forward for you.

  • Hi, unfortunately it does look as though this may not be enough for you and your team may want to add another drug in. Before your next visit to your rheumy team you will have to think about your personal circumstances regarding relationships and when/if you want a family. This information together with your current joint situation should be used to discuss your options regarding drugs. Like the others have said any joint damage cannot be reversed unlike side effects from medication which can be managed or the drug changed. It can take some time to find the right combination of drug to control you and at times it can feel like being on a rollercoaster. My problems started at 19 and although I have now got more joints involved without the treatments I have been on I would be in a much worse condition. Farm

  • Hi

    Generally you would expect to feel some of the benefits of the drug by 3 months, but as you've been told, it can take up to 6 to get to its full effect. Plaquenil is one of the milder DMARDs which is good in terms of being less likely to get side effects, but may mean that it's not strong enough to control the RA on its own. They may look at adding to it or changing to another drug altogether.

    A lot of people are nervous of starting methotrexate, but it is the most commonly prescribed RA medication, usually well-tolerated and one of the most effective. Starting any new medication is always scary. If they talk about putting you onto this or any other medication you can find information about drugs on our website:

    nras.org.uk/medication

    If you live in the UK, you might also find it useful to call our helpline, who can talk through any concerns you have about any medications.

    The helpline is available Mon-Fri, 9.30-4.30 on 0800 298 7650.#

    Kind regards

    Victoria

    (NRAS Helpline)

  • Hi, my rheumatologist started me off on plaquenil. She said it would be a combination of drug that I would need. Not to long after I was put on methotrexate. The pills make me sick but the injections don't bother me at all. It's still wasn't enough so I start on Enbrel. This was all in a 2 1/2 years. I am finally in remission.

    I was so seared to take these drugs, but I knew if I didn't my joints would get damaged.

    I wish you well!

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