Hi to everyone...I'm new to the forum but not to the pain of RA. I have had a severe flare for over a year and have just recently gained control of the pain and seem to be in remission. I started Enbrel without Mtz and only had moderate relief; enough relief to travel to Mexico and spend 5 months. On my return to the states I developed severe pain in all of my joints. I was trying to taper off pred. and did it too quickly. I changed my rheum. and he added Mtz. and it is now 4 weeks later and the swelling and pain have just about disappeared. I'm tapering Pred. and am down to 15 mg/day. I feel better than I have in over a year. I still have some pain in my fingers, toes, and shoulder but it's manageable. I started water exercise and it has been great. My goal is to lose the 30 lbs. I gained after starting Pred. and 20 more. I highly recommend the water exercise. My husband and I are retired and are traveling in our 5th wheel. Even though I had just started Enbrel I went to the jungles of Mexico and we lived on a hillside looking at the Pacific Ocean. I refuse to allow the RA to stop me. There were times I could hardly get into the truck and I needed a boost to help me. We plan on continuing our travels with stops to see the rheum. Are there any other RV'ers out there? I'd love to hear from you. My rheum. has suggested that we start Remicade but I'm reluctant to because I don't think I've given the Mtz a chance. I've only been on it for 4 weeks and in that time I've seen a marked improvement. I'd like to keep the Remicade in my side pocket until I feel that I really need it. Anyone out there in agreement or disagreement with this?
Welcome Lindy.
I agree with the remicade thing. OR at least I did when I originally started Humira. I was given the option of Humira, Enbrel or remicade. There is just something about the infusions that seem so much more serious to me; ya know? Truth is; they are all very simular but some people just respond better to some. Lots of folks end up switching to Enbrel or Humira after getting poor results from Remicade.
You mentioned that you seem to be in remission. That's a term I'd caution you against. It doesn't sound like remission to me. I suppose everyone defines it differently....but I wouldn't define what you are describing as remission.
Glad you found us. Hope you'll be an active member of our group here.
What part of Mexico were you in?
Thanks for the welcome. What is the definition of remission? I thought if you were relatively pain free, inflammation gone, and SR back to normal that this would be clearly remission. Am I wrong?
If I doing well, as I am now, why do you think I should switch to Remicade?
We lived in La Pineta de Jaltemba on the West Coast about 40 miles north of Puerta Vallerta. Small Mexican village, lovely area, jungle down to the beach. We plan on returning and spending 6 months if my RA will allow us to. Medical care was good and for anything truly serious we went to PV. Buying Enbrel in Mexico was prohibitive due to the price. It would have cost me ,400 weekly for the injection!Luckily I was able to get a 6 months supply to take with me.
Hi Linda..welcome!
I'd wait a bit longer and see if you get any more improvement from the mtx. Not sure how much of the mtx you're on, but what about increasing the mtx? I think I'd do that before adding the remicade..but that's just me
Kelly
Thanks Kelly. I'm on 15 mg. of Mtx weekly. I've made up my mind to wait. We're stuck here in Yuma until I see the rheum. next week and then we're headed for Wash. state and British Columbia until August. From now till Sept. will give the new cocktail mix enough time and then I'll make my decision based on how I'm doing. Where are you located in Canada? We'll be seeing friends on the Island. We met some really wonderful Canadians while we were in Mexico and made some lasting friendships.Yeah I'd do the same Linda...because the mtx can always be increased as well over time and since you are feeling some improvement, that to me makes sense.
I'm in Ontario. About an hour and a half west of Toronto. Sounds like you and your husband are having a great time. I'd love to be able to do that.
http://arthritis.about.com/od/arthqa/f/remission.htm
It mentions "clinical remission" and I've seen this myself....but when I tried to discontinue meds it can back....only worse than before. My doctor warned me that my results were only medication induced. Turns out she was right.
I didn't mean to sound discouraging in anyway. I apoligize if I came off that way. I just hesitate to use the word remission due to my experience...but that's not to say you won't have much better results than I've had.
Again; Welcome to AI.
Welcome to AI Linda. It will be fun to have your feedback and also to travel on your adventures vicariously Thanks to everyone for your feedback and no Lovie I didn't think that you were discouraging; I just needed to understand the definition of remission. I was diagnosed in 1999 with RA with a severe onset that left me homebound for several months. After about 6 months I went into remission without meds until last year and then the cocktails were introduced and adjusted over this past year. I guess no matter if it's medication induced or otherwise I don't care as long as I can function and get off steroids. I'd prefer not to use the meds but one can't have everthing. Welcome Lindy,Hi Linda K. It's good to hear from someone who loves to travel and feels that it's worth the risk. I was able to get my usual 3 month supply of Enbrel and then I had to jump thru the proverbial hoops with my insur. co. to get authorization for an additional 3 months. I finally was approved and it was called a vacation override. I didn't care what they called it as long as I got the amount I needed. My next obstacle was the airlines and getting correct information. Just to warn you there may be 3 different opinions about carrying injectibles on a flight and entering a foreign country with injectibles - one from the airline, one from homeland security, and one from customs. We prepared for the worst case scenario and was pleasantly surprised on how easy it was to take the injectibles on board and enter another country. Each country has their own set of rules and regulations and when you return to the states you'll never get the same answer twice from homeland security. For me it was easier than anticipated. The Italian Counsulate may be able to help you. You may need a letter fromn your phycian stating how you use the medicine and why. I carry my enbrel in a small case and keep it cold with blue ice. Works out fine.
While traveling in other countries I'm very careful of hygiene, staying away from people who are ill, and if there is an epidemic (flu) I stay as far away as I can. I take sanitizing soap and wipes with me and use them several times daily. TB is also a big medical issue in other countries and is making a dramatic comeback. Also, you'll need all of your shots, no live since you're on Enbrel. The only problem I had in the jungle was I devbeloped a fungal infection on my knee. I had it treated by a local doctor and once I returned to the U.S. desert it has disappeared. My U.S. doctors do some additional blood work when I return just to be on the safe side. With compromised immune systems and being on Enbrel I don't think you can be too cautious about hygiene when traveling. Just be aware. Keep truckin' and enjoying life.
Thanks Lindy, Your advice is helpful. My travel agent advised me to get a prescription to carry with me for the enbrel and a note listing the 10 other meds I'm on. I don't want to carry the huge 3 month supply bottles that I get from the mail order company my health insurance covers. I had to petion to get the 3 month supply for enbrel but it came through. I'm planning to carry a daily pill box already filled out for the days medications for the days I need to travel. We'll have a mini refrig in our room for freezing the ice block and chilling the enbrel. This will be my first international trip with enbrel so we'll see. I didn't have trouble in Rio when I was on the non enbrel drugs. At that point I hadn't been formally diagnosed. I had no trouble flying cross country at Christmas. The travel agent said it varies from ccountry to country and you can literraly be thrown in jail for drug trafficking if you don't have the prescription with you.Hi Lindy and welcome! I agree with Kelly that you should give the MTX some more time. You arent on a very high dose so you have some room to play with it. I would love to travel around in an RV. I tried to take my kids to the dealership and get a trade on them for an RV, but the salesman said "no deal".