Cruising With Lupus

I was recently diagnosed with the disease, I haven't been to a rheumatologist (sp?) so haven't started treatment, they have me on Cymbalta 3x a day, IbProfin, and vicodin amoungst others. Do any of you also cruise with this disease? Are you able to go snorkeling and swimming or is the sun too much and causes you to have severe flare ups? We're you able to have froofie cocktails with your meds? The food onboard does have quite a bit of sodium in it, do you find the sodium to severly interact with the steroids? In other words do you blow up like a balloon? Have you ever had to visit a Carnival ships' doctor for a severe flare up?What did they do for you? Have your flare ups during your cruise cause you to miss out on a lot? Any information would be greatly appreciated, I am totally new to this and I'm worried about how the pain might affect our upcomming cruise. Any tips and advice any of you may have for me in preventing severe flare ups on my cruise, would be greatly appreciated! Thank you so much in advance! -Val-

I don't have Lupus, but can tell you that alcohol is big no-no with Vicodin, can really mess up the tummy with ibuprofen, and isn't recommended with Cymbalta - many have experienced blackouts with only one drink on it.

Good luck with your treatment. Chronic diseases like that are no fun to try and manage and get the meds right.

Cymbalta has been a great drug for many but when I was prescribed it for chronic pain it landed me in the ER. I still have no memory of most of that day (and no alchohol involved for me.) Have also known several others who had bad side effects from it that became worse with time so be careful - it's powerful stuff.

I have four connective tissue autoimmune diseases. You could say I have SLE + more.

I follow a diet for pre-diabetics (even though I am not pre-diabetic), which basically is to never consume a carbohydrate without a protein, and to maintain a 2 hour window between each (smaller) meal/beverage. This will avoid the inflammation and swelling.

I've never taken cymbalta, but I know that alcohol should be avoided while taking it. I wouldn't take vicodin with alcohol.

If you are taking corticosteroids (prednisone, etc.), DO NOT spend any length of time in the sun, even with carefully applied sunscreen. Wear a hat and invest in some UPF clothing. I have a swimsuit from Australia with sleeves, and a very lightweight long sleeve 30+ UPF shirt that can be worn over everything outside, it is white, has vents on the side and won't make you hot. I bought mine at an online store called RailRiders, but they are available at some sporting goods stores.

I am writing this warning about sun protection because I was recently diagnosed with melanoma. The risk is greatly increased for people who take immune-supressing drugs, and no one warned me.

I was recently diagnosed with the disease, I haven't been to a rheumatologist (sp?) so haven't started treatment, they have me on Cymbalta 3x a day, IbProfin, and vicodin amoungst others. Do any of you also cruise with this disease? Are you able to go snorkeling and swimming or is the sun too much and causes you to have severe flare ups? We're you able to have froofie cocktails with your meds? The food onboard does have quite a bit of sodium in it, do you find the sodium to severly interact with the steroids? In other words do you blow up like a balloon? Have you ever had to visit a Carnival ships' doctor for a severe flare up?What did they do for you? Have your flare ups during your cruise cause you to miss out on a lot? Any information would be greatly appreciated, I am totally new to this and I'm worried about how the pain might affect our upcomming cruise. Any tips and advice any of you may have for me in preventing severe flare ups on my cruise, would be greatly appreciated! Thank you so much in advance! -Val-

My sister was diagnosed with Lupus 32 years ago and has been on 3 cruises since then. Once they get your medication squared away, you may not need pain medication. My sister does not take any pain medication.

As far as the sodium goes, she does tend to swell up in her fingers and feet. I'm not sure if it's from the sodium in the food or the salt in the air. I don't think this is specific to Lupus, as I have seen many people post on here that they have the same problem.

You should be able to go snorkeling and swimming, however, I would wear a t-shirt over my bathing suit to try to limit your exposure to the sun and make sure to wear plenty of water proof sun block.

You didn't say when your cruise was, but hopefully you'll have a chance to get to your specialist before you're scheduled to sail.

Good luck.

Hello NotWthOutablcony

I also have Lupus and am not currently on medication so can not answer your specific questions however there are some excellent Lupus forums that can be found via google (not sure I can mention websites on here). These forums, like this forum, will be full of great advice from folk who have experience of the medications you mention and there side effects.

I wish you well and hope you have a fantastic cruise:)

Thank you so much everyone!!!

I would never drink alcohol with a pain medication, I have heard about the mix with cymbalta and that it REALLY thins your blood but I'm not sure if they'll be keeping me on the cymbalta.

The sun exposure thing has me a bit worried. We have a pirate ship excursion booked in PV with a beach break and snorkeling etc. Not sure if I should cancel or just plan on hiding in the shade with no snorkeling.

I hope to get a good medication regimen and plan on no pain meds in the future (hopefully)

It's the mix of salt with corticosteroids that really causes a lupus patient to swell, I didn't even think about the salt in the air, ugh! I really don't want to blow up on our cruise, I may just bring some type of water pills just in case, that is if my doctor says I can :o

I am really pale and sunburn really easily. I have several long sleeve rash guards from Land's End that I use when snorkeling and when my water aerobics class is outside in the summer. I still have to load up on the sunblock on my legs and face and wear a hat when I can, but it helps a lot. I like the Land's End ones because they seem hold up to chlorine and are alos sized for "real" people unlike the surfer brands like Body Glove. :o I tried on an XL in a Body Glove one time and couldn't get it past my neck. :eek:

Check out the swimwear at Solartex.com. I ordered on a Friday afternoon and received it on Monday. The StingRay suits run one size smaller than marked, I got the collared boy-leg one and it's really cute.

You'll be fine, just be careful. Clothing has to be UPF rated - regular clothes will still allow UV rays that don't burn to get through - they won't burn a person who's not on corticosteroids, but they can easily cause a UV reaction in someone who is. Also carry benadryl with you, and find out if it interacts with any of your medications - but never combine benadryl with traditional seasickness medications if you take them because they are similar antihistamines.

I have Lupus and have been on three cruises since being diagnosed. Once you get started on a drug regiment specifically for Lupus, you will feel much better. I am on Plaquenil twice a day, and no longer have to take steroids. I haven't had a major flareup in over a year. I still go to the beach and snorkel with my family. However, I do have to be cautious about sun exposure. I wear water proof sunscreen, SPF 80. I reapply it very, very often. I make sure that I limit my time in the sun and spend a lot of time under the umbrella. I wear a cover up over my bathing suit, and a hat. As for alcoholic drinks, I avoid them. I still order Bahama Mamas and Daquiris just without alcohol. My biggest complaint is tiredness, so I make a point to rest often through out the day. If I don't my feet do swell.

I was recently diagnosed with the disease, I haven't been to a rheumatologist (sp?) so haven't started treatment, they have me on Cymbalta 3x a day, IbProfin, and vicodin amoungst others. Do any of you also cruise with this disease? Are you able to go snorkeling and swimming or is the sun too much and causes you to have severe flare ups? We're you able to have froofie cocktails with your meds? The food onboard does have quite a bit of sodium in it, do you find the sodium to severly interact with the steroids? In other words do you blow up like a balloon? Have you ever had to visit a Carnival ships' doctor for a severe flare up?What did they do for you? Have your flare ups during your cruise cause you to miss out on a lot? Any information would be greatly appreciated, I am totally new to this and I'm worried about how the pain might affect our upcomming cruise. Any tips and advice any of you may have for me in preventing severe flare ups on my cruise, would be greatly appreciated! Thank you so much in advance! -Val-

My lupus affects my joints. I'm taking Arava and Humira (pen). Once I was flying and needed to carry aboard my Humira. When I went thought security at the airport, I was carrying a colder, ice pack, and a Humira pen. I told security that it could not go through the x-ray scanner. They had to call a supervisor and that supervisor had to call her supervisor. They ended up wiping my Humira pen with a cloth and then testing the cloth. So if you are flying with a medicine that needs to be refrigerated, plan on taking extra time at security.

When you first come down/diagnose with lupus it hits you like a freight train. Once your rheumatologist finds the right cocktail of meds, you will feel better. Flare ups will come and go, don’t be scared of taking steroids. I can snorkel and swim, but I can't stand or walk for too long. Sometime the fatigue hits me and I need to take a break. The only thing that lupus may stop me from doing is the ATV excursion because of my joints in my hands. Do not be scared/stress of traveling with lupus (I heard stressing can cause flare ups). Find a good rheumatologist and once the meds start working you will feel much better. And remember to keep up with your blood work.

Best Wishes,

Debbie

We will be taking our 12 year old son with lupus on a cruise in a few weeks...this will be his 2nd cruise but first since treatment. We will be doing a few things differently and are a little worried about keeping his meds in order...he starts cellcept soon and just finished chemo treatments. We hope he can relax and have fun. Plan to let him snorkel, swim, fish etcccc....crossing our fingers

I don't have Lupus, but I have Lymphedema and a Celiac type problem. If you go to the Maitre 'D on embarkation, they will provide with with a safe menu for the cruise. They will help you choose proper food every day.

And, it is an individual thing, but I cannot take that pirate tour you are talking about. I have a photosensitivity, and no matter how careful I am, I get sick just from the heat. I end up looking like I have the measles, and I'm miserable. IMO. :)

I take shorter shore excursions--4 or 5 hrs is my max. Then I come back to the ship and rest until dinner.

It's all doable if you pace yourself. I need alot of rest, and I also have a spine problem.. Pace yourself. Yes, there are some things I just can't do. :(

Pat

If possible, I would suggest that you allow some time between when you start taking the drugs and when your cruise so see how you are going to react to them.

I am allergic to everything (including over the counter cold medicines) so I am very cautious about new meds....

hope it all works out well for you and you are able to enjoy cruising...

My lupus affects my joints. I'm taking Arava and Humira (pen). Once I was flying and needed to carry aboard my Humira. When I went thought security at the airport, I was carrying a colder, ice pack, and a Humira pen. I told security that it could not go through the x-ray scanner. They had to call a supervisor and that supervisor had to call her supervisor. They ended up wiping my Humira pen with a cloth and then testing the cloth. So if you are flying with a medicine that needs to be refrigerated, plan on taking extra time at security.

 

When you first come down/diagnose with lupus it hits you like a freight train. Once your rheumatologist finds the right cocktail of meds, you will feel better. Flare ups will come and go, don’t be scared of taking steroids. I can snorkel and swim, but I can't stand or walk for too long. Sometime the fatigue hits me and I need to take a break. The only thing that lupus may stop me from doing is the ATV excursion because of my joints in my hands. Do not be scared/stress of traveling with lupus (I heard stressing can cause flare ups). Find a good rheumatologist and once the meds start working you will feel much better. And remember to keep up with your blood work.

 

Best Wishes,

Debbie

Thank you Debbie! I like you, have the horrible stiff, inflamed, achey joint pain, along with the muscle spasms, blinding headaches, tendonitus, and we believe the lupus is attacking my gal bladder, as I have been in and out of the hospital with severe gal bladder problems, I've had every test under the sun and all they have ever found was "sludge" no stones, so they never removed it, I just got out of the hospital again 2 weeks ago, last Thursday I was diagnosed with lupus. It all makes sense now, everything.

I would like to thank ALL of you for your input and advice, you really have no idea how much it has helped me, or how much better I feel knowing you all cruise with it or with problems like it, as well. I have been on the lupus boards, but it just doesn't seem real over there, I know I have not accepted it yet. I feel a connection with my fellow CC'ers because we all chat every day about one thing or another, we all have some sort of interest and relation to eachother through cruising. I cannot relate to the lupus patients on the lupus site because of not accepting this disease yet, so I feel I have no ties with these people. Your posts have really helped me feel more comfortable in all of this, so again, thank you. Now I'll quit being all sappy :o

Steph, I am SO sorry your son has this horrible thing! I could not imagine having this at such a young age, and to have to undergo chemo to boot. His lupus must be very aggressive, and again, I am so sorry for you, but more for him. Hopefully in the long run, his young age and early treatments might mean that when he reaches my age (27) he can just live, and have it be under complete control. I hope the best for him, as I hope the best for all of you dealing with these horrible diseases. We can all be glad, that at the end of the day, there is always cruising. It never fails to make me smile :D Big Hugs to you all! -Val-

Thank you Debbie! I like you, have the horrible stiff, inflamed, achey joint pain, along with the muscle spasms, blinding headaches, tendonitus, and we believe the lupus is attacking my gal bladder, as I have been in and out of the hospital with severe gal bladder problems, I've had every test under the sun and all they have ever found was "sludge" no stones, so they never removed it, I just got out of the hospital again 2 weeks ago, last Thursday I was diagnosed with lupus. It all makes sense now, everything.

 

I would like to thank ALL of you for your input and advice, you really have no idea how much it has helped me, or how much better I feel knowing you all cruise with it or with problems like it, as well. I have been on the lupus boards, but it just doesn't seem real over there, I know I have not accepted it yet. I feel a connection with my fellow CC'ers because we all chat every day about one thing or another, we all have some sort of interest and relation to eachother through cruising. I cannot relate to the lupus patients on the lupus site because of not accepting this disease yet, so I feel I have no ties with these people. Your posts have really helped me feel more comfortable in all of this, so again, thank you. Now I'll quit being all sappy :o

Steph, I am SO sorry your son has this horrible thing! I could not imagine having this at such a young age, and to have to undergo chemo to boot. His lupus must be very aggressive, and again, I am so sorry for you, but more for him. Hopefully in the long run, his young age and early treatments might mean that when he reaches my age (27) he can just live, and have it be under complete control. I hope the best for him, as I hope the best for all of you dealing with these horrible diseases. We can all be glad, that at the end of the day, there is always cruising. It never fails to make me smile :D Big Hugs to you all! -Val-

Once you get on the right mix of meds, you will be feeling much better. As I mentioned earlier, my sister has had lupus for 32 years. She was diagnosed back in the day when it as hardly heard of, so it took awhile to get her condition under control. However, once she was under control, she has only had 2 major flare-ups in the past 30 years. That's either some pretty good doctoring, pretty good meds, or both.

No one else has mentioned the swelling, but I know my sister does (as I said earlier). Check with your doctor about either taking or increasing your dose of diuritics while you're on the cruise. This will help with the swelling from the sodium retention.

You still have a little over a month, so hopefully they can get things under control for you by then.

Once you get on the right mix of meds, you will be feeling much better. As I mentioned earlier, my sister has had lupus for 32 years. She was diagnosed back in the day when it as hardly heard of, so it took awhile to get her condition under control. However, once she was under control, she has only had 2 major flare-ups in the past 30 years. That's either some pretty good doctoring, pretty good meds, or both.

a

No one else has mentioned the swelling, but I know my sister does (as I said earlier). Check with your doctor about either taking or increasing your dose of diuritics while you're on the cruise. This will help with the swelling from the sodium retention.

 

You still have a little over a month, so hopefully they can get things under control for you by then.

omgosh! 30 Years?! Wow that's incredible! I would love be under a regimen that worked that well!, I am currently in the hosptal as we speak. They admitted me last night when I was once again. having gallbladder attack. There is a link between lupus and gallbladder obviously, but not concrete.

Have you had a celiac panel and do you take fish oil? Apparently research is starting to show a connection with celiac's and auto immune diseases.

Also, fish oil is very anti inflammatory and could help. (ask doctor first)

Have you had a celiac panel and do you take fish oil? Apparently research is starting to show a connection with celiac's and auto immune diseases.

 

Also, fish oil is very anti inflammatory and could help. (ask doctor first)[/quo

Yes I had the Celiac panel, couldn't tell you what the results were as I've had SO many tests in the last few weeks! I just can't stomach the fish oil, I've even tried mega red, which has no fishy smell or taste....until you start burping it up, ewww. I'm on 800mg of ibprofin every 6 hours for inflamation, and also eat a lot of flax seed, hummus, whole grains etc.

 

I'm typing this from my hospital bed, had another full fledged gallbladder attack late last night and my mother and fiance made me go to the ER, they admitted me and I am waiting to see the surgeon. We firmly believe that the lupus is attacking my gallbladder. Its so miserable! The pain is excruciating! I have been having gallbladder attacks for almost 2 years now, and with our cruise just 5 weeks away, and attacks coming more frequently, I pray they finally remove it. Please keep your fingers crossed for me :o I hope everyone is having a wonderful week.

If you have gluten intolerance or Celiac's then the whole grains will be making you worse!!! A LOT worse!! I have heard you can freeze the fish oil and take it while frozen which eliminates the fish burps.

Good luck to you. Find out what the Celiac panel indicated...

A Few links for you to read while in bed:

http://www.bastyrcenter.org/content/view/703/ (Lupus may be gluten allergy)

http://www.ncbi.nlm.nih.gov/pubmed/18223501 (Adult celiac disease followed by onset of SLE)

http://www.livestrong.com/article/441827-lupus-and-gluten-intolerance/ (Lupus and gluten intolerance)

Hello, Notwithoutabalcony. I apologize in advance for dredging up an old thread. :o I'm just curious as to how your cruise went? I've just been referred to a rheumatologist for what appears to be Lupus. Like you, I've been to the Lupus forums but I can't seem to relate to the people there... I guess I'm not far enough along? IDK... I'm just hoping that you can share some insight on your treatment and experience. I don't know if it's good or bad that I feel more connected to the people here than I do there.. LOL Thanks for any insight you can give! Again, sorry for the un-cruiserelated post!

Thank you so much everyone!!!

I would never drink alcohol with a pain medication, I have heard about the mix with cymbalta and that it REALLY thins your blood but I'm not sure if they'll be keeping me on the cymbalta.

The sun exposure thing has me a bit worried. We have a pirate ship excursion booked in PV with a beach break and snorkeling etc. Not sure if I should cancel or just plan on hiding in the shade with no snorkeling.

I hope to get a good medication regimen and plan on no pain meds in the future (hopefully)

It's the mix of salt with corticosteroids that really causes a lupus patient to swell, I didn't even think about the salt in the air, ugh! I really don't want to blow up on our cruise, I may just bring some type of water pills just in case, that is if my doctor says I can :o

If you want to be on a low sodium diet on the cruise just inform the cruiseline that you have special dietary needs and discuss it with the maitre'd the first day. Cruise ships work very well with special dietary needs and are very accomodating accross all lines that I have traveled.

I have Lupus. I was diagnosed about 16 years ago. I will be turning 49 June 24th.

Lupus is a funny thing. Everyone is different!!!:rolleyes:

Mine was affecting my kidneys. They were functioning at 67% when they figured out what I had.

I had horrible joint pain, swelled ankles and fingers (had to have my wedding ring cut off), a sun induced rash on my arms, very anemic.

They immediately put me on Steroids, and I had to go through some low dose Chemo treatments to suppress my immune system. I also take Plaquenil.

I have been on quite a few vacations since my diagnosis. I make sure I wear sunscreen. I'm not really supposed to be in the sun.

I have never had a flare. I am lucky!!:D

I have Lupus. I was diagnosed about 16 years ago. I will be turning 49 June 24th.

Lupus is a funny thing. Everyone is different!!!:rolleyes:

 

Mine was affecting my kidneys. They were functioning at 67% when they figured out what I had.

I had horrible joint pain, swelled ankles and fingers (had to have my wedding ring cut off), a sun induced rash on my arms, very anemic.

 

They immediately put me on Steroids, and I had to go through some low dose Chemo treatments to suppress my immune system. I also take Plaquenil.

 

I have been on quite a few vacations since my diagnosis. I make sure I wear sunscreen. I'm not really supposed to be in the sun.

I have never had a flare. I am lucky!!:D

That's nice to hear. So far it's been all "Doom and Gloom" and I'm just not ready for that yet. LOL Thank you for sharing!

I also have SLE. I was dx'ed 11 years ago and all I take for it now is the Plaquenil (love this drug). I was also put on Adalat for Raynaud's and it almost completely took away the Lupus fatigue within a few days. I wear sunscreen and cover-up or use an umbrella.

I was warned that traveling was a no-no and would be too stressful and I've been on 11 cruises since the diagnosis and a lot of other places! Now the rheumatologist just laughs and asks where I've been, what I have planned and if I brought any pictures :D.

I figured I was the same person the day of the diagnosis that I was the day before and was not going to let it get in my head. I never visit the Lupus boards.

spleenstomper - thx for those links if you're still around.