WindsorJ
Brandon, Miss
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Well, I got it (R. A.). I've just had my first infusion with Remicade. Once I get settled down on this treatment I will have to have an infusion every two months. You have to get an IV and lay there for two hours while it drips in. That's going to cut into my travel time pretty bad. I asked if I could make arrangements with different hospitals or clinics to get this done as I traveled. The answer was NO, nobody will accept the liability of some other doctor's patient. Anybody else in this situation? What did you do about it?
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neschultz
Eastern Shore of MD
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Ive never taken that but do take enbrel and its a 50 mg sshot once a week. I take it for psoriasis but its really a RA medicine. Have you tried that?
Good luck
Rizzoli & Isles
2005 Escalade EXT & 2012 Shadow Cruiser S225RBS
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Gale Hawkins
Murray, KY
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WindsorJ wrote:Well, I got it (R. A.). I've just had my first infusion with Remicade. Once I get settled down on this treatment I will have to have an infusion every two months. You have to get an IV and lay there for two hours while it drips in. That's going to cut into my travel time pretty bad. I asked if I could make arrangements with different hospitals or clinics to get this done as I traveled. The answer was NO, nobody will accept the liability of some other doctor's patient. Anybody else in this situation? What did you do about it?
Remicade could be a drug of last resort vs for an active person perhaps?
In 1975 I came down with Ankylosing Spondylitis at the age of 25.
Today at 61 more of my damage is due to the meds that I should have never taken than the AS itself.
Today my main muscle pain and joint damage control is by acupuncture and massage therapy.
As you know the damage Remicade can do to your ability to fight off/recover from infections requires one to stay somewhat isolated from the general public and with fast access to medical care givers who know you and your case inside and out.
One that insists on being without pain when having arthritis I learned the hard way pays a huge price. Once I decided to live with the pain its control over my life decreased.
Doing the things you wish with tears of pain running down your face may seem strange at first but over time the tears actually stopped for the most part as I became less emotional about the pain.
Massage therapy helps with the joint and muscle spasms (major cause of my arthritis pain). Acupuncture helps control both muscle and joint pain.
All of the pain solutions in an RX put me in a mental fog. That was worse than the pain in my experience.
NO one person knows what another is going through so hence can not give valid advice very well to the person in pain.
After nearly 50 years of living in acute pain it really does seem normal because I can not remember being pain free. I know two guys about my age that finally decided to no longer live with the pain that surgery just made worse.
The kids being 14 drives me. The MH, backhoe, dump truck, tractor, golf cart are mainly devices that forces me to keep going. Yes they do burn up cash.
My excessive compulsive behavior seems to help manage the pain due to having a one track mind. That is why I can drive the MH for 12 hour periods with only pit stops. My focus is on getting to where we are going and not on my pain. It hurts to get up in the morning and it hurts to go to bed at night. Every thing hurts but if another matter is on my one track mind then pain can not be on the same track at the same time.
I do think people new to pain levels that can take your breath to just take a step especially later in life have a harder time adjusting.
Others can tell you their experiences but in the end you have to listen to your own body. Had I listened to all the medical advice given I would be dead today. I do hold an earned OD degree.
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Wally Walleye
Shohola Pa
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So far I think everyone missed the point of your post. What type of travel plans do you have? Are you a snowbird that stay put for the winter If you are going to stay put for a while and return to the same area every winter (spring, summer or fall) find a doctor in that area that will care for you. Many of us that go to AZ for the winter have doctors there and they understand snowbirds. The other option is if you are moving around more often, before you leave your local doctor call ahead to a hospital in the area you will be when you infusion is required, ask them if they have outpatient area that will infuse the medication with an Rx from you private doctor. Also check with your insurance to be certain it will be covered. Who told you that you couldn't get the infusion elsewhere was it the doctors office or outpt facility that you are currently getting your injections? Oh wait if you go elsewhere they are going to loose money!!!!! no wonder they are telling you no. There are people that travel all over that get ongoing medical treatment while they travel. Just be persistant and make some telephone calls. Hospitals, Outpatient clinics, home health care agencies. Services are available out there. Good Luck.
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Gale Hawkins
Murray, KY
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Wally Walleye wrote:So far I think everyone missed the point of your post. What type of travel plans do you have? Are you a snowbird that stay put for the winter If you are going to stay put for a while and return to the same area every winter (spring, summer or fall) find a doctor in that area that will care for you. Many of us that go to AZ for the winter have doctors there and they understand snowbirds. The other option is if you are moving around more often, before you leave your local doctor call ahead to a hospital in the area you will be when you infusion is required, ask them if they have outpatient area that will infuse the medication with an Rx from you private doctor. Also check with your insurance to be certain it will be covered. Who told you that you couldn't get the infusion elsewhere was it the doctors office or outpt facility that you are currently getting your injections? Oh wait if you go elsewhere they are going to loose money!!!!! no wonder they are telling you no. There are people that travel all over that get ongoing medical treatment while they travel. Just be persistant and make some telephone calls. Hospitals, Outpatient clinics, home health care agencies. Services are available out there. Good Luck.
Did you read the risks that makes traveling when using remicide beyond the typical concerns? Do you understand what the drug is doing to the OP's body to help with the RA symptoms?
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TripleE
Traveling the country
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I have RA and have used Enbrel for years. Since it is self injected you don't have any problems traveling. I understand a lot of insurance companies prefer to have their members on Remicade (must be a money issue) but if your doctor is willing to switch you to Enbrel it would be easier. Discuss the various drugs available with your doctor. Each has it's own side affects.
If you can't change I don't see why you can't go to a hospital in the area to get the infusion. People who are on dialysis travel and get services all the time.
Remember, honest communication with your doctor is vital in your life.
Bill & Treasa
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motorcycle jack
FT all over
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I believe if you get a hold of an infusion nursing group, like Coram, they will do it all over the country with your doctor's orders. They will even come to your RV and do it so you don't have to go to an infusion center. Just make sure your insurance covers it or you are willing to pay the extra charge. I did it for two years so I know it is possible.
* This post was
edited 06/21/12 05:40pm by motorcycle jack *
John
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stanbnv
Fallon NV, La Peñita de Jaltemba, Nay.
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I've been on all of the biologics for severe rheumatoid arthritis and was on Remicade when we were traveling full time. I usually made sure that at the time of the next infusion I had done my homework. I'd call the hospital and speak to the infusion nurse and find out what my rheumatologist needed to fax to the center. Once the orders were faxed I followed up with the infusion nurse and made an appt. for my infusion. I've had infusions in Nevada, Arizona and Washington state. Never had an infusion center refuse to treat me. I'm now on Rituxan and am looking at yearly infusions because I'm in clinical remission. I have only one bit of advice, fear the disease more than the medications. RA can cause all types of health issues outside the joint area. It can cause serious heart and lung issues that can be life threatening. I know I have both and the damage from RA was done when it wasn't controlled by medications. Good luck. Lindy
Stan & Linda
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Scottiemom
South Dakota/Indiana
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Here in Elkhart Campground there is a couple who come every year. This is where their children live, so they spend their summers here and winters in Yuma.
He has to have infusions for RA. I don't know what he did to set it up here in Indiana, but he gets them here and then in Yuma in the winter. I don't know how much other traveling they do, but they would be able to travel some since he can get infusions in these two places.
Dael
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WandaLust2
TN
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WindsorJ wrote:Well, I got it (R. A.). I've just had my first infusion with Remicade. Once I get settled down on this treatment I will have to have an infusion every two months. You have to get an IV and lay there for two hours while it drips in. That's going to cut into my travel time pretty bad. I asked if I could make arrangements with different hospitals or clinics to get this done as I traveled. The answer was NO, nobody will accept the liability of some other doctor's patient. Anybody else in this situation? What did you do about it?
That sounds like self serving baloney. I have a port that has to be flushed every 5 weeks. I went to FL for the winter and a clinic there was happy to do the flush. But you must provide a copy of your records and a way for the new Dr to reach your regular Dr.
WandaLust. Retired. Middle TN
Heartland 2011 NorthTrail 28BRS
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