Cruising With Lupus

Watch your time out in the sun, you may rash or burn easily. Hats are a must and there are many things to do out of the sun. See your rheumatologist and get his/her opinions. I wish you all the best. One of my kids was diagnosed with this as a teen and is in her 30's and doing great. She's a very sucessful trial attorney and wife and mother of 4. We also got a very gloomy prognosis when she was diagnosed. It is a serious disease but can be controlled and you can live a full life with it.

I also know someone who has lupus who has it VERY well controlled. She has been on cruises and other outdoor events with no problems in the decades since her diagnosis. She lives on an island, less than a mile from the ocean. She's OK with the salt air, but we're all different. She does cover up, wear a hat and use sun-protective clothing. She is under such good control since the initial diagnosis & having to take a burst of prednisone to get it under control that she's not needed any medication in decades.

Have heard that Blue Lizard brand sunscreen with zinc oxide or similar is MUCH more protective than most other brands & is highly recommended in Australia where there are a lot of cases of skin cancer. Don't have personal knowledge.

Good luck--work with your rheumatologist & you should be great!

Hi Val,

I'm a 20 year nurse who has worked with a lot of people dealing with chronic disease. I have a couple of things to share with you. First of all, the advice regarding your meds here is very good. You will learn your own body and what it can and cannot handle pretty well over time. Human beings don't usually all react the same way to the same meds/diet etc. There are certainly things that are universal, like avoiding alcohol when on narcotics, absolutely dangerous. Things like your tolerance to salt while on steroids can be more variable, though you will definitely have to watch it more than someone not on steroids. Remember to keep more hydrated.

More important than that, make a decision, right now, that you are going to manage your disease and not let it manage YOU. Educate yourself, pay attention to how your body reacts to certain things, and learn to have the life you want to have by keeping it under control as much as possible. Try not to waste too much time being mad about it and/or trying to ignore it. At the same time, don't let it define your life. Consider a little side thing that you do and remember to concentrate on the business of living, if that makes sense. Most of all, if at all possible, don't give up things you love. Just find a way to modify so that it is within your abilities whenever possible.

Best of luck to you! You can definitely live a full and rich life while managing a chronic disease. Remember you're in charge!

Again, I apologize to the OP for hijacking this thread, and thank all of you that have posted. I'm especially happy to hear that there are medicines other than Pred. that seem to give good results. I've felt worse in the 4 days I've been on it than I have in a LONG time! I'm going to go search for that sunblock now... :)

I should also mention that my face never got puffy from the Prednisone.

I was on it for over a year. I know that is a common side effect.

I did have a hard time sleeping. I did have to take sleeping pills for a little while.

Although this is an old thread, it's been very helpful for me to read and know that I'm not alone.:o

Wow. Blast from the past with this thread. By son; 12 at the time of this thread had just finished chemo. We will be going on a cruise this next May and he'll be almost 16. He is soooo much better than he was then! Lupus primarily now affects his arthritis. What we learned on the cruise we went on 3 years ago was that his body is so much happier at sea level. He never has reacted to sun. So, we love tropical vacations to get down from the elevation in Colorado!

I have been on 6 cruises. I have both lupus and ehlers- danlos syndrome. I wear sunscreen and stay out of the sun most of the day. My legs do swell so I lay down to help it and wear all my braces as needed. I don't drink but I love frozen non alcoholic drinks. The thing to remember is to relax and take your time. I will bring my will chair to this cruise . It was to much walking on the last one.

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For those of you who struggle with disease related swelling, I cannot encourage you enough to drink bottled water. Yeah, I know...they desalinate the water...it's cleaner than your water at home...blah, blah blah. But what I can tell you is that both my sisters and I have different autoimmune disorders all associated with pain and joint swelling and none of us can drink the ship's water without terrible swelling. If you don't believe that, and you start feeling like you are retaining water, even though you are drinking a lot of water, switch for a day to the bottled and see if it makes a difference.

For those of you who struggle with disease related swelling, I cannot encourage you enough to drink bottled water. Yeah, I know...they desalinate the water...it's cleaner than your water at home...blah, blah blah. But what I can tell you is that both my sisters and I have different autoimmune disorders all associated with pain and joint swelling and none of us can drink the ship's water without terrible swelling. If you don't believe that, and you start feeling like you are retaining water, even though you are drinking a lot of water, switch for a day to the bottled and see if it makes a difference.[/QUOTE]

 

While cruising regardless whether drinking the ship tap water or drinking bottle water my feet ankles still swell due to the higher salt content in the food. The trick to keeping swelling in check is not the type of water but squeezing lemons into the water as lemons are a natural diuretic.

For those of you who struggle with disease related swelling, I cannot encourage you enough to drink bottled water. Yeah, I know...they desalinate the water...it's cleaner than your water at home...blah, blah blah. But what I can tell you is that both my sisters and I have different autoimmune disorders all associated with pain and joint swelling and none of us can drink the ship's water without terrible swelling. If you don't believe that, and you start feeling like you are retaining water, even though you are drinking a lot of water, switch for a day to the bottled and see if it makes a difference.[/QUOTE]

 

While cruising regardless whether drinking the ship tap water or drinking bottle water my feet ankles still swell due to the higher salt content in the food. The trick to keeping swelling in check is not the type of water but squeezing lemons into the water as lemons are a natural diuretic.

Interesting. I hate lemon in my water though, so I will just stick to the bottled which works for me.

I don't have lupus but diagnosed almost 20 years ago with Mixed Connective Tissue Disorder, which included several autoimmune disorders including Reynaud's, Sjogrens and IBS. I have been on Plaquenil twice a day for all of those 20 years and my medications have increased to assist in treating the other disorders. Besides joint pain and severe muscle spasms, I have become fatigued, although still working a full-time job.

My husband and I have cruised for several years and I always look forward to our cruises because it allows me the opportunity to get lots of rest and rejuvenates me. I refuse to let these diseases get me down and try to keep a positive outlook on everything. I know my limitations like I can't get in the sun for more than 10 minutes, even with the highest sunscreen, so I just choose to stay under an umbrella or in the shade. I've learned to rely on my body to tell me when I need to slow down, but I still need my meds to help me through each day. Besides the Plaquenil, I take Vicodin, prednisone, procardia, synthroid, flexaril, and a couple of vitamin B supplements.

Like I said, I refuse to let it get me down. I just make sure that my meds are packed and take precedent over my clothes and anything else.

Sure hope you are able to get your lupus under control with meds and your cruise will be everything you hope for.

Terry from Georgia

It is so amazing to read a thread with others having been diagnosed with the same things as me! SO nice to not feel alone.

Do any of you have issues with balance? I fall in the shower (along with other places) at least 2-3 times a week. We have installed grip bars in our showers at home and booked accessible for the same reasons.

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 don't have Lupus, but I do have vitilago and lost most of the pigment in my arms and legs. I still go out in the sun, however, I always were a hat and use a 70 SPF sunscreen lotion. If you are going snorkeling, make sure you get a sports sun tan lotion. It is possible to go on your excursions and still be safe, it just means you have to be more cautious and reapply the sun tan lotion often.