Brenda,

How can they tell if you're in remission? I'm new and curious!

I'm sorry you can't fly to Pheonix, maybe soon?

They are going by my CPK levels and the fact that I have more strength in my legs. He said that I would be risking infection since I am on Cellcept which suppresses my immune system. So I have to avoid large crowds or being around anyone who is sick.

Brenda have you been on it long?? I was on for 6 months and never had compromised immune system. I got toxic, but really my labs stayed pretty stable. Have you been getting sick easily?? I just know i have not experienced that and i worry folks will get all worried when it may be unnecessary...

I was started on Cellcept right after being diagnosed last summer, but then taken off for a few weeks when I developed all that swelling. I have been on steady now for the past few months and can see the improvement in my muscles. I am a lot stronger and have not been ill, but then I am never around many people except at church and I feel guilty each time I use hand sanitizer after shaking hands with others. I try to hide my hands so no one will feel offended, but I don't want to get sick.

I'm surprised your doctor would say that. I travel quite a bit. I fly without incident and I take 1-2 cruises a year. I need the new scenery to recharge my batteries. I do keep an eye on my blood counts and have never been compromised although I do get sick easy and if I do get sick, it lasts a really long time.

I figure I can get sick anywhere....grocery store, work, church, the mail man. I just practice good hygiene and avoid people that are obviously sick.

And while traveling, I've seen very sick people flying. They wear masks. I've not done that but have been tempted. Bare minimum, wouldn't that work?

I absolutely refuse to let this disease take EVERYTHING away from me. I will continue to travel and socialize regardless.

When I fly I have worn a mask. I feel like typhoid Mary, but it has helped. I just saw these nasal screens you can buy online that do the same thing and look a lot better. They say you can't catch anything through your mouth only the nose. Next time I fly I will try them.

Brenda,
I am really surprised your doctor told you that. I have been on immunosuppressants for almost a year now and I have not gotten sick. I work very closely with people and am in crowds quite often. When the big bird flu was around about 10 years ago I was afraid to fly to visit my parents in Florida thinking I'd bring the germs to them and my friend who is a scientist who studies TB said they are more likely to get it in a grocery store than from someone from an airplane. I think you should go on your trip. Just be careful. I am going to Philadelphia and Canada this summer, I do think we deserve a little vacation after the year we've been through!

I am told I am in remission too, based on my bloodwork which is normal CPK and my strength and my skin clearing up. I am going to take the medicine for one more year then try to get off of it.
Hugs
Maruska

It was my neurologist who told me that I can't fly or cruise. I am going to check with my rheumy because I also thought that I could wear a mask. We will see. I am still pouting, so many I will get an okay from him.

I was traveling 1-2 weeks a month when I started seeing my Neuro. I went because I was struggling to put my pull suitcase in the overhead bin and the stairs on the smaller planes were too steep for me. Never was I told I shouldn't be traveling. We figured out ways for me to work around my new limits. I've been on Prednisone 5 years in June. I've been on Methotrexate for almost 4 years. I've been on 7 cruises since I was started Prednisone (one was 2 weeks). I've also taken probably 25 flights.

I think your Neurologist isn't being realistic. If he doesn't want you around germs, you shouldn't be going to church or the grocery store either. Your doctors should be visiting you at your house.

The worst sickness I've gotten since being sick is when I went to the hospital to have my monthly labs pulled. I also really worry about it at the doctor's office since everyone there is sick. I wash my hands often and don't touch my face after until I wash my hands well.

I wouldn't even ask permission. I would go.

I agree that Cellcept lowers your immunity as I have been on it for 19 months and get sick easily. Last time I flew I wore a mask. I too sit in the back of church with my Purell! I see it as a hand lotion! I don't fly often and am flying in two weeks and will take Airborne before, and ask my seat mate if they are sick!!! I did last time and he "slept" the whole way!!! LOL

So far I haven't been sick with a cold or anything. It is probably because I am seldom around people. I wasn't aware that we could take Airborne since we are suppressing our immune system. I decided to go ahead and plan my cruise for 24NOV and to check with my Rheumy tomorrow when he is in for his opinion. Of course my daughter is not happy that I am going against what the Neuro told me. She states that I have been on Cellcept for less than a year, but I know she is more afraid because she has been on this journey with me and has seen me at my worst. She asked how am I going to eat with a mask on and I told her that I will slide food under the mask...lol.

I'm so glad you decided to go. I went on a cruise in February. I wash my hands all the time and take hand sanitizer and use it before I eat anything or after I touch anything. I don't travel with a mask. I was told they really don't block much.

You are so going to enjoy relaxing on the ocean. I don't move like I did before I got PM but there is nothing that beats laying by the pool (in the shade) enjoying the ocean. Much better than being on my couch wishing I was out and about.

Good luck with your Rheumy tomorrow.

Speaking of vacations. I have only had this disease a short time. Does anyone know how travel insurance work? Do you have to disclose your illness and pay more?

I haven't sold leisure travel in a while, but there was a insurance that covered pre-existing conditions. I have always believed in purchasing travel insurance even if the traveler was healthy for peace of mind. I will check into it and let you know.