It is summer and my poor kids want to go outside and mom is saying no alot because I feel like I am cooking on the stove when I go out. Does this get better? Does it lessen? I have only been on it for two weeks but I am not happy. It is summer after all. I feel like I will have cancer or something if I go out though. Even if I put a double swap of 50 + this happens. Help!
I have this problem and whole lot of suggestions. I seem to just absorb the heat. First, do you have any skin rashes, especially on your face after going out in the heat. If so, you need to be tested for Lupus. Yes, you can have both Lupus and RA.
I don't think I have Lupus. It's always showed up negative. But I do turn bright red and the heat makes me very ill. First, put sunblock with the highest UV protection that you can find on every exposed part of your skin including face and hands. I use the 50. I get it at Walmart for a very good price.
Use a hat when you are outside. Also, I wear long sleeves and a long skirt or pants. I don't run around outside in shorts any more. When I did, I used to get blisters (or maybe skin lesions) on my legs.
If you are greatly affected by the sun and heat like me, it can have a cummulative affect over the course of the summer. If you read up on Lupus, it will mention this. Since RA is another autoimmune disease, and I do have mixed connective tissue disease (which means you have overlapping autoimmune diseases), I'm taking precautions. Anyway, over the summer, the effects of the exposure to the sun builds up and can affect your disease. For instance, I have heart and lung problems that always develop in October (that's how long summer lasts in Phoenix). Happens every year.
Try and plan your events with your kids for early morning or late afternoon. The sun is not nearly as intense. Again, read up on the precautions for Lupus and sun exposure and you will be doing the best possible things.
When I first started on MTX, I did get these little blisters from even short exposure to the sun. But since I have been doing the sunscreen, I don't seem to have that problem any more. I did talk to a RD about this and it is a bigger problem at higher elevations. For instance, living in Albuquerque, NM is worse than Phoenix because Albuquerque is at a higher elevation.
Also, wear sunglasses all the time outside. A lot of people are not aware of how much one's eyes can be affected by RA. RA can inflame the eyes, you can get Sjogren's (dry eyes), glaucoma, cataracts, etc. So baby those beautiful eyes and use the highest rating UV lenses. If you wear glasses, get the pop on sun lenses. Not the coolest look in town but you can't replace those eyes.
The same thing really applies to your children any way. You want to protect them from the sun. So making sensible rules for the family protects everyone.
If you are like some families that spend the summer by the pool, it might be helpful to hire a responsible teenager to be out there with your kids.
Get those outdoor misters and a outdoor fan. Change your outings to the store until evenings. Practically everyone does this in the middle of summer in Phoenix any way.
Oh, and check your car windows. If you can get them tinted with UV this also helps from getting you cooked.
I believe this will get better for you over time. But I certainly would call the doctor and mention that you are having this reaction. It may be that they will want to do additional tests on you.
Stay cool. I know it's hard.
Thanks Deanna,
I am not getting blisters yet but I notice a definite change in how I feel outside. I just got my summer wardrobe in order but now I will have to make a few changes. I like the skirt idea. I will have to get a few of those. I will have to read up on Lupus. The RA said I didn't show any signs on this so far but I am keeping a notebook of my symptoms and trying to stay on top of it. I took week 3 tonight and so far feeling ok. I hate what it does to my hair though and face... droopy and steals the life out of both. I am trying to eat so healthy to and plan to go to a nutritionist soon. Otherwise feeling good. I always hated the sunscreen but I do have 50 and will lather up. Thank you very much for responding. It helps to have this support so much! Have a great weekend.
Donna
Donna,Woohoo! Finally someone else on here is from Houston!
Anyways, I havent had any changes in since starting the MTX. I dont like the heat anyways though...but no probs on the days I have been out in the sun.
Pawvertee, I just went back up to 25 mg. But I do believe the blisering was worse in the beginning. I started covering up right away though. I think just some people are more sensitive because they have an overlap between autoimmune diseases. So, I think I get some Lupus-like symptoms. I've made the doctor check me for it and he gets all ruffled about doing it. He's convince I don't have it even though I've showed up in his office with my face with big red splotches. He is so stubborn. But he is also brilliant. I don't want to have Lupus as well, so I'll just take his position for now. I'm on medicines to cover it anyway. I miss the sun. I really do have to stay out of it. I can't just go jump in the pool in the middle of the day. Even being in the car in the summer is a trial for me. I have to do things early morning or late evening. Early morning, I can't move for a couple of hours and late evening, I'm so worn out from the day's efforts. But I miss the sun. In Phoenix, we have many worshippers of the sun (not literally). I had a couple of bosses that were out there golfing the day it hit 122 degrees and not even the planes were allowed to fly.
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