RA|QA Rheumatoid Arthritis Questions & Answers

QuestionSlipfinger asks:

Hello RA Guy..

I am 40 year old active, single guy, director of a company and apart from the current serious struggle for my company to stay afloat druing this serious financial disaster life was looking pretty good..

After a couple of years of my right knee flaring here and there and more joints in the last twelve months, five weeks ago after a multiple joint flare up I was diagnosed with RA with a Rheumatoid Factor of 26 (weakly positive). While waiting for a consultation with a rheumatologist I was prescribed Diclofenac, and on Christmas Eve started a course of Prednisolone tapering from 20mg to 5mg over the course of the next month to relieve immediate inflammations and Salazopyrin EN increasing from 500mg to 2000mg over the same period.

I have just finished reading every post you have blogged since you started this RA diary. To be honest, although very informative, I am completely shi**ing myself at the prospects of what looks incredibily likely I am to face in the coming hours, days, weeks, months, years and decades..

Not being married or in a relationship with anyone at the moment (I am a fussy fu**er!) I live on my own and the future looks like it can and will be extremely difficult, for someone living on his own. I still have my mum and sisters in the next town who will support me through thick and thin, but the future has suddenly started to look very bleak.

I have so many questions about medicines and organic supplements and have no RA TEAM to speak of and dont really know where to turn.

Any advice from anyone here?

12 Comments
12 comments
  1. Tortoiselvr says:

    Hi Slipfinger – There are a lot of us who are single and able to manage okay with this disease. Know that the disease affects everybody differently. Being diagnosed is overwhelming (I was dx in March). I’ve found great support here on this blog, and at http://www.dailystrength.org/c/Rheumatoid-Arthritis/support-group. In addition, this site has good information http://www.dailystrength.org/c/Rheumatoid-Arthritis/support-group. Here is a site that deals with a supplements and not “traditional” medicines: http://gentlehugs.wordpress.com/

    I’m sure there is much more out there. Read all you can, learn all you can. Join a group, ask all the questions you want – we all learn from each other.

    May your New Year not be nearly as bleak as you fear it may be.

    Tort

  2. Diana Leneker says:

    I felt the same way when I was first diagnosed in 2001. The more I read the more I became terrified. Finally I just told myself to take one day at a time. Once you see your rheumotologist and get on a course of treatment you will start to see light at the end of the tunnel. Life goes on, and you may need to adjust the way you do some things in it…but by staying informed, and know that you will have some days that are better than others, you too will make it.

  3. Amy says:

    I know your pain. (And feel it too) I am sorry this crappy disease has caught you too. Ugh! To make you feel somewhat better about the outlook, I was diagnosed at the age of 24 and now I am 28. So for the last four years I have learn all the joys of this chronic thing! Being single I think makes it much harder and overwhelming. Trust me it will get better. Thank goodness we have online forms and blogs now. I didn’t have that at age 24 and felt like the only person who had this so young. Guess what, there are sadly alot of younger professionals going through the same thing yourself and I are. RA guy is a blog I just subscribed to, and it has alot of good stories to make you feel like your not alone. I think that just keeping yourself positive and being proactive with it is the best thing you can do. Mentally prepare yourself and others for those “bad days” The B###ch about RA is the inconsitency. It is something you can barely control, so when I have a super exciting date, and I feel like utter crap, I try to just ignore it and distract myself with the date. Mentally it helps. After a couple years with this lovely RA..lol I’ve learned to let friends and people know that you have it. I know that sounds like who really cares, understand and wants to hear your medical problems, but the more people know the easier it is. They will help and understand. The one thing that I find hard is actually getting people to understand the damn inconsitency, cause I wonder what RA is thinking when I plan a great weekend, and it kicks me in the a@@! Its like a hidden disease, one day you can run a mile, others you can hardly move. Well sorry your christmas wasn’t brighter. Watch the blogs and talk to others, it will make you feel better.

  4. WarmSocks says:

    Salazopyrin EN (sulfasalazine) is just one of many DMARDs, and it takes a while to kick in. Your rheumatologist will probably add methotrexate or another DMARD. There are stronger medications to try if those aren’t as effective as you’d like.

    The only other tip I’d add is that this would be a very good time to make sure you’re up-to-date on all your immunizations. Some of the vaccines contain a live virus and shouldn’t be given when you’re on immunosuppressants. It’s a good idea to see your PCP right away for pneumonia, tetanus, shingles, etc. shots – even before your rheumy appointment.

    Best of luck.

  5. Sister FlareUp says:

    Hold tight, it is a wild ride and fortunately (or unfortunately depending on how you look at it) no one experiences this disease the same way. Be in the moment it is all we have anyway! There is hope in every day.

  6. CarlasCorner says:

    Trust me, everyone is overwhelmed when they get their diagnosis — which doesn’t help you one whit, but please have faith re: the previous posts, that having a treatment plan and understanding your disease will give you at least a sense of control back. If you’re smart enough to run a company, you’re way smart enough to deal with this disease. A lot of us (me included) have productive, demanding careers and lives. One of the best things is the terrific community of people who have gone before you and can give you insight, advice, and sometimes, plain old hope. I know you feel alone right now, but trust me, you just had a whole army of RA warriors start covering your back. We’re here any time you need us.

    Cheers, C

  7. Wren says:

    The best thing you can do right now is educate yourself, Slipfinger. Learn about the disease itself and the current treatments but — and this is almost more important — learn all the tricks for how to put less stress on your joints and how to care for them (and yourself) when they’re flaring. Little things like jar openers, getting lever latches to replace hard-to-grasp doornobs, and using two hands on tasks that in the past needed only one (like lifting a pot off a stove) can and will make a big difference in your everyday quality of life.

    Be your own best advocate, because believe me, no one is going to do it for you. Educate your family and friends about RA, particularly about the fact that it’s unpredictable. Except for the pain (which is variable in intensity and length of duration), RA’s unpredictability is probably the hardest thing about the disease to cope with.

    Finally, have patience. In this hurry-up world of ours patience is tough, but with RA you don’t have much choice. It takes time for medications to work, and sometimes what works for that guy over there won’t work for you. It’s truly trial and error. You could get upset over this, but all that will do is make it harder to cope; it sure won’t speed up the process. Just stick with it and in the meantime, try alternatives to drugs like meditation, tai chi, and accupuncture. They can’t hurt at all, but they sure might help.

    Finally, remember you’re not alone, even though it seems that way. Like WarmSocks said, you’ve got a whole army of people who are also fighting this disease ready to offer their moral support and empathetic ears. It’s worthwhile, too, to see if the Arthritis Foundation offers any classes on coping or exercise in your area. It helps immeasurably to know that you don’t have to face the reality of rheumatoid arthritis alone.

    Best of luck to you. I hope the new year brings you peace and joy. You’re on an adventure, facing a new challenge. You’re up to it.

  8. Slipfinger says:

    Thank you all for your kind words of encouragement and advice, I really appreciate it, and thank you RA Guy for making my post prominent on your site so that I could receive comments..

    Apart from the odd joint flaring here and there, I have only had the one multiple joint flare up that only lasted two days because I went to the doctor immediately and got prescribed Diclofenac and the flare stopped more or less straight away.

    During those two days though I got a serious glimpse of the regular pain that you all talk about, and the thought that this could happen suddenly out of nowhere, even when on DMARDS scares the shit out of me!

    Do these DMARD drugs not work then??
    At the moment I am still on Prednisolone and the Salazopyrin EN hasnt kicked in yet, but the thought of these drugs not working when I have finished tapering the Prednisolone is worrying.

    Are there any people on here who don’t use any drugs at all and just find relief with a change or lifestyle and organic treatments?

    Anyway, I am here now, one of you lot, whether I turn out to be a superhero remains to be seen, but I am sure I will be a regular reader of blogs like these and will be in your faces a bit with questions…

    Thank you all again!
    Happy ******* New Year!

  9. Elizabeth says:

    Hi Slipfinger! I wasn’t diagnosed until I was 63, but I was well acquainted with this nasty autoimmune disease because my mother had it back when there was little that could be done for it. I feel very fortunate to have it at a time when there are many options – medications, physical and occupational therapy, etc. I currently am on Methotrexate, Plaquenil, and Folic Acid. Plus, I take Tylenol or, if the pain is serious, (fortunately not often) Lortabs.

    Keep your joints warm and moving. Get up and move around frequently. Stretch gently and put your joints through as much range-of-motion as you can. Get an early referral to a physical therapist and an occupational therapist. They can give you an appropriate home exercise program to keep your joints and muscles (especially the muscles) from deteriorating (as rapidly). That’s one of the “right” things I did. I started using night splints right away, and they have really helped my hands not deterioriate as rapidly. Getting on DMARDS early was another “good” thing.

    Yours for good health! And, yes, it WILL be a Good and Happy New Year!

  10. CarlasCorner says:

    Slipfinger:
    One of the great (and frustrating) issues with RA is that there are a number of treatment options. In answer to your question, different drugs work differently for different people. You and your RA doctor may have to try more than one treatment option to find the one that works best for you. And at some time, that might have to be altered as newer treatments become available or as your body “gets used” to the treatment.
    The true, honest [bad] answer is that there is no cure for the disease. The best that can happen at this point in time is to slow it down and hopefully send it in remission. When I recently switched to Enbrel, I heard from people who had been on the medicine and had been in remission for years. So there is hope and there are great results. Sometimes it takes patience to find the right one (and being a type-A personality, that’s been one of the hardest aspects of the disease for me).
    It sounds like you’ve been diagnosed early and that you’re starting treatment early, so you’re off to a great start already.
    Hang in there. Take it day by day and feel free to reach out to our community if you need anything.
    Carla

  11. Kali says:

    I don’t have RA, but I do have a chronic illness that gives me some of the same problems, so I guess my advice is more about living with chronic illnesses than it is about RA specifically.

    1) REACH OUT! Keep in touch with your friends and try to keep your support network alive. One of the worst things that can happen to you is to lose your support network. You also need to build up some people who get this side of things, I think. Meeting people online has served most of this purpose for me. Do expect that some people just won’t be able to ‘get’ the whole living with a chronic illness thing and may be put off by it and kind of ‘fade out’ of your life. Hurts like hell, but it seems to happen to all of us. Making sure you spread around asking for help (instead of burning out a few people) and finding time and energy for things that aren’t medical seem to be really important in preventing that.

    2) Learn new hobbies that don’t upset your illness, if your current hobbies do. I had to give up a lot of my more physical hobbies because they made heavy use of my hips, which are problem joints for me.

    3) A kind of zen mindset seems to help a lot of people. Accepting what is does not mean ‘giving up’ or ‘losing hope’, it means working within the current limits. A zen outlook can help a lot with that. It can take a lot of the stress and pressure to HEAL NOW DAMN IT off of you. (That is, when you’re able to maintain it. I, ah, don’t do so well at this one)

    4) Keep in mind that not all people need the stereotypically perfect person to find them wonderful. I met my boyfriend when I walked with a cane, and he’s been with me while that changed to two canes, a pair of crutches, and finally a service dog. I also wear a ton of braces (er, when I’m being good and wearing them). So it’s possible to find someone who can look past all the medical hardware and body problems and still see you for an attractive person. While I may not have the deformation that can come with RA, I have my share of ‘that body part doesn’t work to original specifications anymore’. And when the first of them came up, yeah, it was horrendously embarassing, and I spent a bit of time in the shower crying – to me, it had been this HUGE deal (um, let’s just say my GI system is disagreeable sometimes). The boyfriend’s only question was whether I felt up to having him stay or if I’d feel better resting alone.

    You’re welcome to come chatter over at my blog about things, too – I talk a lot about what living with a disability like mine is like, and what living with a disability in general as a young person is like, so who knows, maybe some of it will resonate with you.

    ~Kali
    http://www.brilliantmindbrokenbody.wordpress.com

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