Thursday, May 31, 2012

New to RA!!!! Need some help!!!

By aircrew Friday, June 05, 2009

Hey everyone Well I am a 28 yr old male and currently in the NAVY. Anyways I got diagnose 4 months ago. Up until then I was flying for the navy. As soon as I got diagnose they grounded me. Right now my career is in a stall while we wait for me to get my condition in to remission. Well according to my flight surgeon I have to come off prednisone in order to fly again. The problem is that i just had my first flare up last week (my hands swelled up like the Nutty Professor over night) and my rheumatologist uped my prednisone. Prednisone is so wonderful for my swelling and pain lol but it is so bad for me. Is there any thing I can do to get my RA undercontrol in a quickness as it is killing me not being able to fly. A ground job is not for me. Well any advice would be greatly appreciated.

Thanks everyone for the responses and the encouragement.... Here is an update...
Brad, Health Guide
6/ 6/09 12:10am

Hi! I am a Naval Vet! Crypto Intel back in the day. I salute your service. I am 44, been diagnosed fairly recently myself. I am on 40mg of pred myself, which as you say is wonderful, but also dangerous in the long term. The Pred will help control the RA until they can get you one other meds. Are you on a DMARD? Diesease Modifying Anit Rhuematic Drugs include ones such as Methotrexate and Arava to name a few, most are from the chemotherapy family. Not sure if you are at sea or not, do you have a Rheumotologist? You should look into Biologics that work with the DMARDS, such as Humira, Enbrel, Orencia to name a few. All of these drugs take some time to have any effect. They may not and you may have to start back at square one with a new one. Once you find an effective med they can wean you off the Pred and hopefully get you flying again. Feel free to ask anything here, or send me a message. I will help however I can. Good luck to you!

 

Brad

6/ 6/09 4:57pm

Brad is so RIGHT!  All prednisone does is cover up the symptoms. It does not, I repeat DOES NOT in any way stop the progression and damage of the disease.  I cannot understand why any rheumatologist in their right mind would prescribe it for you, when you find out the side effects. My cousin has had RA for 55 years, and was prescribed it when she was 3 years old.  She is completely crippled, has had multiple surgeries, and joint replacements, and recenlty almost died of hypoxia/heart attack because of a throat nodule.  I finally suggested she at least should be on methotrexate, which she asked her rheumie about, and he said he had never thought of it!  Seriously, this disease has so many great new drugs to treat it.  Besides depression, bipolar disorder, bone necrosis, and weight gain, the list of side effects for prednisone is endless.  If you are moody, craving salt, gaining weight, or anything else, that is the drug. 

 

Get on methx first, then the biologics - Remicaid, Humira, Arava, Enbrel, Kineret, keep trying till it works.  Prednisone is not the answer, in fact it will just cause more harm than it ever helps.  I have been on methx for 9 years and Kineret for 4 years - I exercise, garden, and have got my life back.  So please, I urge you, find a different rheumie and get the proper treatment for this disease, and don't just cover up symptoms with one of the most powerful and dangerous drugs in existance. (Did I mention my cousin had three vertebra die because of this drug, and had to have a mental plate put in her neck to hold up her head?!) 

 

I really hope you can get this under control, and get back to flying. It wrecked my feet, so I had to give up dancing, but I still play flute lots, now that my fingers are under control.  I also ride a bike, do weights, so there really is hope. Push those doctors until you are better.  They are not gods, they are often not even informed about current research. You need to go on-line and research everything for yourself, esp. in medical journals, and take control of your own health.  Good luck!

6/ 6/09 7:56pm
I work as an Airframe and Poweplant mechanic and love just being around the aircraft. Gets in your blood. You may want to get a hold of Eric Lindbergh (yes he is actually Charles Grandson)on how Enbral still allows him to fly. At one point he was in a wheelchair. His website is http://www.eriklindbergh.com/NYtoparis.htm you can email him from there.
Anonymous
Anonymous
6/ 8/09 11:39pm

Unfortunately, none of the medicines work quickly.  It is the first thing you must learn about RA.  You might as well accept the fact that everything about this disease takes time to find out.  Sorry to be the person to tell you, but you must be realistic.  I truly hope that you are the one that goes into remission and that the drugs work quickly for.  I was diagnosed over 8 years ago and still haven't found the right drug combination and I have never been in remission.  I hope things work out well for you, but being realistic with this disease may be the only way to get through it.

Lene Andersen, Health Guide
6/ 9/09 7:53pm

So sorry you've been diagnosed with this blasted disease, but I would like to welcome you to this site! We have a fantastic community here and being in touch with people who know exactly what you're going through can be a very important part of learning to live well with RA.

 

The other comments have some great ideas, particularly in terms of getting you on one of the DMARDs that can suppress your RA, but I did want to say something about prednisone. Like all drugs, it comes with side effects, but it is quite common for rheumatologists to prescribe prednisone for RA, as it has been proven to suppress inflammation and protect your joints from damage. Many people with RA are on prednisone for years without any major consequences.  As well, prednisone is often used in smaller doses as a sort of booster for DMARDs like methotrexate or one of the Biologics, however, if you find a DMARDs that works for you, you may not need prednisone at all and this may enable you to return to flying.

 

You may want to check out oursection about the basics of RA, as well as our area for the newly diagnosed what you can find posts with tips on how to navigate life with this disease. Hang in there. There are all kinds of medication options for you and the prognosis has changed significantly in the last 10 years as a Biologics have become the more standard treatment.  There's a very good chance you'll be able to lead a pretty normal life. Good luck and please let us know how you do.

6/18/09 10:48am

I know this is a little late, but I am a military spouse who has been living with RA for 3 years now. First be thankful you have tricare, because you have access to the most advance meds with no problems getting it paid for. I was on pred for 1 month and then my dr moved me to Meth. That alone didn't work. He then put me on a combo for enbrel and meth and for the past three years i have little to no flares up. Of course everyone is different. For the enbrel it started working with a month or 2.  Good luck. 

7/10/09 10:36am

Get good treatment from your Dr. get the swelling down and then start your eating and exercise retraining. Our bodies for some reason that doctors don't even know have triggered a switch to start RA and in our bodies that switch is there to turn off.

  Like in a aircraft, if a switch gets turned on it can also get turned off. Good success in finding your switch and turning it off. I'm a student pilot and I was scared that RA would take my flying away,thus far it has not. I run a marathon every six months to keep my immune system down and it so far is working for me. Running myself into the ground is better than all the meds I was taking and now I'm only taking vitamins and a few endurance gels.        

7/10/09 6:21pm

Well first of all thank you all for the encouragement and advice. This is all scary for me as all I ever wanted to do is fly tacticly (blow crap up). Well I have now been grounded for six months although they did give me an 18 hour up chit for a training mission so I could show someone else how to do something. I had to come off all my meds for a week (man was I sore that week). Anyways yesterday was another visit to my rheumie. Lets just say it did not go as well. Bad news is I could not talk him out of keeping me on prednisone, good news is I'm now down to 2.5 mg (half a pill) of prednisone. He is keeping my meth (everytime i say im on meth it just sounds bad lol) at the same dose which is 24 mg once a week and started me on 200mg of hydroxychloroquine (has anyone ever taken this before). The joke around the squadron right now is that im a cancer and malaria patient. One of my friends said today " You could make some bank when we go to central america". Well my spirits have been up most likely because my wife gets home from deployment in 5 days but I have noticed at work I have some mood swings towards some co-workers. Does anyone have that problem too? Well everyone thanks for letting me rant on I will now cut this short and I promise to do a better job respond to your comments. Thanks again for the support.

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By aircrew— Last Modified: 09/21/10, First Published: 06/05/09