It has gone from gout to RA within a year??? Sorry but WTH?

Discussion in 'The Watercooler' started by DDD, Jul 27, 2013.

  1. DDD

    DDD Well-Known Member

    As you guys know I have a number of major issues to cope with based on my life, my health, my husband etc. but darn it easy child/difficult child has been diagnosis'd with RA pdq since it was "gout" a year ago. His local MD has him scheduled for shots that he is to administer himself to his joints. Good grief.

    I have checked out the internet on RA and I think the shots are steroid shots. easy child/difficult child has reieved a phone call (at our store) from the insurance provider who allegedly is suppose to "give him instructions and send him the medication and injection materials". I answered the phone and said he was not there and not expected back until next week..sigh. easy child/difficult child has a capital H history with drugs but I dont think he has ever done injections. He is a WOOS! :) What can I say the "big bad A teen" could barely tolerate the required childrens shots. LOL!

    My internet research sure makes it sound rare that a twenty something would have RA. The local MD specialist has his degree from an offshore institution. I'm just a skip away from broke. on the other hand, don't you guys think I need to pony up for a specialist that I know is well trained??? Do any of you think that pot smoking has ANYthing with swollen joints? I don't! That is the "only" bad choice he is making and it is now in moderation. husband and I have as our primary a Rheumatology expert who was well educated in the USA. We both really have trusted him for thirty plus years. I think I need to ante up or sell something or whatever to make sure that easy child/difficult child has the right care. Does that make sense? He is so "you know whattin" vulnerable since his brain surgery that I just can't cut him off from my heart or limited purse strings. Yikes and Sigh. DDD
  2. Dixies_fire

    Dixies_fire Member

    Tough blow to bear. I have actually met a younger person with gout before thought it was really odd at the time but didn't know him well enough to ask "what's up with that?"
  3. DDD

    DDD Well-Known Member

    Gout I could "get" as it often has to do with alcholism. He no longer drinks, yeah! But RA replacing gout pdq I don't get. on the other hand he does have swollen joints. He does not eat healthily as his SO is more into "country cooking" but I just can't grasp that my former All Star athlete kid has gotten to the point of needing injections at 26. Yikes. Maybe it is just denial but I can't wrap my head around it. DDD
  4. InsaneCdn

    InsaneCdn Well-Known Member

    Hmmm... RA treatment doesn't usually start with injections. They usually start with NSAIDS (ASA, Motrin, etc.)
    I'd be concerned about the treatment approach - and that's on TOP of whether or not its an accurate diagnosis.

    But yes, even teenagers can get RA.
  5. Hound dog

    Hound dog Nana's are Beautiful

    I would advise a 2nd and 3rd opinion before any treatment.

    There are exceptions to any rule, but the odds of someone his age with RA is very low........very very low. And as you said, the gout is explainable.

    Gout can affect more than one joint, especially if one is not sticking to the treatment plan. Know what I mean??
  6. InsaneCdn

    InsaneCdn Well-Known Member

    Steroid shots have side-effects, too... might want to add that to the equation.
  7. witzend

    witzend Well-Known Member

    That does sound weird. Steroidal injections into joints are not anything to take lightly, and not usually something that they have you do regularly. Only with flare-ups as needed and when nothing else will work. Can he afford to get a second opinion? I love the Mayo Clinic site for information that is easy to understand about most any disease or malady. Here's a link to what they say about RA. Starting with steroid injections instead of other treatments sounds drastic to me, but what do I know? on the other hand, I know that steroid s/e are AWFUL.

    Gout can be aggravated by many foods, especially foods high in salt and preservatives. I hope you'll be able to get to the bottom of this. From what I read the diagnosis of RA is a process of elimination rather than a definitive blood draw. We all know how iffy the "well it doesn't seem like this, so it must be that" diagnosis's for our kids are. Steroids are pretty tough on the body. I'd hate to see him put on them in any form if I weren't sure.
    Last edited: Jul 27, 2013
  8. ThreeShadows

    ThreeShadows Quid me anxia?

    What are his uric acid levels?
  9. Kathy813

    Kathy813 Well-Known Member Staff Member

  10. witzend

    witzend Well-Known Member

    (From Kathy's link)

    Maybe this is what they want him to inject? It sounds expensive...
  11. SuZir

    SuZir Well-Known Member

    BRMs are not first line of treatment for RA and when going there, it requires extensive medical follow-up (from not having single cavity in your teeth etc.) and is expensive. One of my friends is on them and her yearly co-pay limit (after that medications are paid by public social insurance) that is little less than 1000 dollars doesn't even cover the co-pay of first round of medications in January, and what I have noticed reading posts here, medications are much cheaper in my country than in US.

    RA, and some other rheumatic diseases presenting first similar like for example ankylosing spondylitis (that is the one my friend has and also difficult child has had a team mate who was on BRMs for that) are common or even very typical with younger people. In ankylosing spondylitis typical new patient is a male under 30, onset is usually in their early twenties but first the symptoms are very vague.

    However for any rheumatic diseases the first treatment is not BRMs, neither steroid shots. Steroid shots may be needed, if medications don't work, but they only numb, don't treat and they have nasty side effects and can be used only so long. Typical first treatment are antirheumatic drugs like cyclosporin and sulfasalazine. They actually slow the disease down. Pain treatment (which steroid shots count in) is to manage pain when trying to find right combo of medications and non-drug treatments (like exercise, for some diet etc.) that treat the problem.
  12. svengandhi

    svengandhi Well-Known Member

    DDD -

    It is NOT rare that a 20 something would have RA. I was diagnosed a few weeks before I turned 20 and had been ill for almost 3 years at the time. The prime years for diagnosis is early 20's to 30's. What is more rare is that a male would have RA as it's overwhelmingly a female disease.

    If he is getting steroid injections, it is likely cortisone to take down swelling. The shots you administer to yourself are likely biologics, like Humira or Embrel. He may have been diagnosed with gout because he initially had symptoms in his feet. Has he had blood testing? Does he have rheumatoid factor? I don't, so it isn't a prerequisite to having RA as you can have it without the factor. Has he been tested for Lyme disease, some of the symptoms of which can mimic RA? I was tested about 20 times for Lyme because I don't have RA factor. Does his back appear to be stooping over? Has he been checked for ankylosing spondylosis, which primarily affects men. If you've ever seen a man so stooped over that he looks like he's at a 90 degree angle, it's usually that disease.

    There are other treatments which can be given before resort to biologics. I am currently in a flare and am taking 7 Methotrexate pills once a week and Aleve once daily. At the beginning of the flare, I had my knee drained and cortisone injected. I was on Prednisone for a few months but weaned off. My rheumatologist (don't allow him to be treated by anything but) wanted to go with biologics but I was very opposed. I had x-rays done which showed that I didn't have serious joint deterioration so the doctor allowed me to stick with non-biologics. I have some morning stiffness but the Aleve really helps with that. I'd rather be a little stiff than use biologics until I have absolutely no choice.

    Also, look into dietary changes. Dairy and tomatoes (nightshade family) can aggravate a flare. A visit or two with a nutritionist can also be a good idea. If he has an SO, they should go as well to hear what should be avoided.

    When I was first diagnosed, I was told I'd be lucky not to be in a wheelchair by 25. That was 30 years ago and I'm still walking on my own.

    RA can usually be managed.
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I wish I knew more and could help more, but my friend's husband is in his late 60's and has had RA his entire life (he had to retire early). I do know there is something called juvenile RA. I have no idea what the treatment is for RA though. I know my friend's husband takes medicine. Not sure what kind.
  14. DDD

    DDD Well-Known Member

    This is going to be brief because for whatever reason I have posted twice with-o success. I appreciate you all and have decided that I am going to get a pharmacy printout and take it when I go to my MD who, weirdly, does not specialize on cancer...but RA issues. I am trying to detach from easy child/difficult child but his health is of major importance to me since he is LOL my "baby". I accept that I can not change his choices. I accept that my cancer should be my main focus. But, lol, I am not able to sit back and "hope" his local MD knows what to H he is doing. I'll check back in with you guys after my Tuesday appointment. Have I ever said unequivacally that I am NOT into medical issues and I'd rather be run over by a turnip truck than face all of this stress??? :) DDD
  15. susiestar

    susiestar Roll With It

    It is sweet and very loving of you to want to make sure he is getting the treatment he needs. It has not really mattered what was going on with my health if one of my kids has a health problems. Heck, five days after having a disk in my neck fused I spent the night with J in the hospital and my surgeon would have had a hissy if he had known. So I COMPLETELY understand why this is important to you.

    RA is NOT an age related illness. It can strike at ANY age and is far more complex than most people realize. While this could be a misdiagnosis, it also could be true.

    I highly doubt that an insurance co is going to pay for anyone to give himself steroid shots at home. If a doctor is doing this, easy child/difficult child should RUN like an Olympic sprinter crossed with a cheetah to another doctor. I am NOT joking AT ALL. Steroids are highly dangerous and should never be given outside the dr office.

    It is much more likely that he is to give himself injections of a biologic medicine. To my knowledge those are the medications most commonly given to yourself to help with RA and other similar conditions. These medications can do absolutely INCREDIBLE things to help, but they can have very serious and long term side effects also. Of course much of that depends on how he reacts to the medicine. Insurance companies do a TON of second guessing the diagnosis's of people and even more if an expensive medication is prescribed. Biologics are VERY expensive and the doctor has to do a bunch of extra paperwork to get them approved for a patient. NOT that this couldn't be the wrong diagnosis and treatment anyway, but rxing these medications is not as easy as rxing many medications. You have to have tried certain other steps and medications and you have to have certain lab tests done and have certain results on those tests. At least the ins co's here demand this because a friend went through this a few mos ago.

    Do what you need to in order to feel okay that he is getting the right help so that you can concentrate on doing what is needed to beat your cancer! It would be very hard to stop worrying about him to focus on yourself after spending your life first raising your kids and then raising the grandkids. So accept that, and do what needs to be done and take care of yourself!
  16. Liahona

    Liahona Guest

    Good luck with everything. JRA runs on my family. difficult child 3 has it. It started when he was 18 months old. Luckily it is a very mild case. But I would get a second opinion from a RA dr if I were you.
  17. DDD

    DDD Well-Known Member

    Biologics may be what the Dr. has ordered. The only thing I know for sure is that the Dr. ordered the shots to be provided by mail order from a separate insurance company division. easy child/difficult child has Medicare and Medicais coverage due to his brain injury disability so I feel confident it is not some "off shore" weird medication. I'm going to gather as much info as possible and take it with me tomorrow. I'll let you all kow what my MD has to say. Thanks. DDD
  18. svengandhi

    svengandhi Well-Known Member

    DDD -

    Look up the Arthritis Foundation website, which is very helpful. Also, this is not Juvenile RA, which is usually diagnosed before puberty or just after. Biologics would be what you inject yourself with. Although I'm fine with needles being stuck into me, the thought of injecting myself freaks me out and that's another part of why I declined biologics. Your grandson needs to see a rheumatologist. I've had times where I saw mine weekly. Now I am on a 6 week schedule. You should also know that he will need regular blood tests for liver, kidney and other levels; which ones and how often depend on what medications you are on. Gout is an arthritis disease. All arthritis diseases are auto-immune in nature.

    I know others have said this as well, but biologics are usually not the first line of attack. Prednisone for a flare, steroid or cortisone shots for specific areas, NSAID's like Aleve or Naproxen (Naprosyn), sulfa drugs, penicillamine, Methotrexate. I took gold shots for years in my butt and then my arm, but they are moving away from that.

    Good luck to your grandson and to you.
  19. susiestar

    susiestar Roll With It

    Sven is right. Make SURE that easy child is getting the tests to set up a baseline BEFORE he gives himself the first shot. He also needs a tb test. I had one while preg with J so I didn't need another, but you need one before these because they can mess up your immune system further. There are a LOT of types of RA, not just what we think of as 'arthritis' and some do some strange things so you might not think of him as having arthritis based on the common types.

    The shots for biologics are not hard to give and you get instructions in many different formats including written, with diagrams, on video, online (written and video), and any other way your could think of. My doctor insisted I sign off on having been taught by the nurse, watching a video, reading the directions and prescribing info, and giving myself the first shot in his office with someone to drive me home just in case I freaked out or something. It takes very little time to do.

    I would ask him to think long and hard about them if he has not tried other DMARD drugs, or if he is to try remicade and/or humira. they have very high rates of side effects and every person I know who has taken them has developed lupus as lupus is apparently also a side effect of these medications. You can get lupus with-o the medications, but using these medications seems to guarantee it. I know 14 people here from a support group who all ended up with lupus after one or the other of those medications. Only two were men, but it ended up being all the people we knew who used either medication, so it was alarming. Half of them had kidney failure five years later and the doctor says it is very possibly from the medication also. It doesn't seem to happen with the other biologics like enbrel though. I have not had either kidney problems or lupus and I took enbrel seven years ago. These are not medications to take lightly.

    DMARDS are disease modifying anti rheumatic drugs and include methotrexate, plaquenil, and a host of other medications. The arthritis foundation website or mayo clinic website will have the info you need on them, and all possible ones should be tried before biologics because they are less damaging to the body AND because we know what they will do to you and we do NOT know what the biologics will do. My rheumatologist gave up on me because I have a form of arthritis that doesn't respond to anything we tried and it gets the worst of the side effects as drastically as possible so many medication trials were total disasters and/or caused permanent problems. He did all he could but when none of the medications helps and every medication he tries does something awful, well, there isn't a lot that can be done. He saw me monthly for four years and then said he was afraid to try anything else for fear of doing more damage than help and sent me to a pain doctor.

    I hope your son is helped by the medications. I am sure it is not from some out of the country pharmacy. Biologics are so expensive that most insurance companies have specialty pharmacy divisions to handle them. They must be carefully handled and kept cold, so they are generally shipped overnight in coolers with dry ice or special cold packs that keep things very cold. Have him keep those cold packs because they are great if you go on a trip or drive a distance to Sam's or whatever. They keep things cold longer than most cold packs do.

    Very few people react the way I do, so don't dwell on the issues I have had. My body just does not work right, and refuses to even try. It tends to stick its' tongue out and give a big raspberry to anything we try, and that is annoying to say the least. It is also quite uncommon. I am sure he will find something to help.
  20. susiestar

    susiestar Roll With It

    One thing for him to ask the doctor about is a prescription for lidoderm patches. They will come from the specialty pharmacy most likely and he can only use 3 per day, on 12 hours and off 12 hours. They are lidocaine patches and give amazing relief from any area you put them on. You can cut them into shapes to fit on knees and other bendy places. They are pretty miraculous.

    Star's mom was even able to go out dancing once she tried them and she hadn't been out for a long time because of her pain. I have a few hidden for emergencies like splinters because they numb the skin and you can then get a splinter out or deal with another problem that otherwise might get expensive at the doctors. Bro had no insurance and worked construction and was always getting hurt so my dad found these VERY helpful. They are also used to treat shingles and are one of very few medications that really help with the pain of shingles. If insurance will cover the cost, these are TOTALLY worth every single penny.