My experience with the sun and MTX. . . I spent normal time in the sun without slathering on sunscreen. From 6 months (including the summertime) I wound up with a lot of brown spots, including on my lips, that I didn't have prior to this. These are likely permanent brown spots. As with everything else, different people will react differently, and my skin was clearly more damaged in 6 months than it has ever been.
I was also told no sun with Plaquenil, but had no issues with that.
We don’t have embrel here. What does it do?
bella said:
I am on 25 mg of Mtx, now for 2 years and Sulphasalazine for 1 year and now waiting for approval for Embrel. Some slight naseaus on the following day as I take mine before bed to minimize this. The following day I get a bit of pain in my right side. Liver function still good. Sometimes I fall to sleep in front of TV very early after Mtx. Lately I have had this metalic taste in my mouth which I don’t like. I had some hair thining in the begining for the first few months where you could easily see my scalp through the hair and without me realising it soon thickened back up a few months later. I also got a new layered hair cut to help disguise it.
I am not much of a drinker of alcohol but my Rhuemy said if I took my Mtx no later than Wednesday I could have a glass of wine over the weekend. Better check it out with your Rhuemy first before you start.
Thanks.
Stoney said:
My experience with the sun and MTX. . . I spent normal time in the sun without slathering on sunscreen. From 6 months (including the summertime) I wound up with a lot of brown spots, including on my lips, that I didn’t have prior to this. These are likely permanent brown spots. As with everything else, different people will react differently, and my skin was clearly more damaged in 6 months than it has ever been.
I was also told no sun with Plaquenil, but had no issues with that.
I am covered with brown or age spots. My dermy says I only need to wear sun screen when in a canoe or any other reason I am sitting in the sun. I do not sun bath and wear a hat and stay out of the sun for the most part prefer shade. I garden (or play in the garden!) late in the day. I am 55 and only have P on my scalp and in skin folds. I had a lot of sun exposure before blocks were invented, prior to being 18 in 1975. I spent most of college on the roof with friends and reflectors slathered in baby oil and iodine! I am just avoiding sun burn while on mtx. I am checked annually with Dermy for melanoma and to kepp an eye on my P which has not changed in 3 decades.
Enbrel is one of the biologics, others are Remicade, Humira, Symponi. They are used here usually with a DMARD such as mtx or leuflunomide.
Robyn,
I am sorry someone hurt your feelings. I think we have to remember how our e-mails might read and remember when read other people's emails might sound if we could see their face or hear there inflections. Email can make enemies very quickly and without harmful intentions on either side. I am sending you hugs and prayers as we all struggle with this stinky :-) disease.
Can anyone tell me what <3 means? I think it is very cute but don't dare use it till I know what it means!
Thank you Michael. I really appreciate your kind words and hugs and prayers.
Robyn, I would like to publicly apologize for offending you. When I said, "O bull" I meant is as, O bull to whomever told you that you "can't" go out into the sun. We can go out and enjoy our lives in the daytime, but with some extra caution.
I suppose my frustration came out and I worded it inappropriately. As many of us here I'm sure feel right now, as this disease progresses, I seem to be feeling the effects of more and more things that I "can't" do and for reasons I hope you understand, being told that I can't go out in the sun is absolutely freaking horrible to me. Again, I apologize. I think what I need is to take a break from thinking about it all the time because I'm getting bitter. I feel bad, I really didn't mean it like that.
<3 is a heart, Michael
I'm really not a bad grouchy person, just overtly blunt when I feel very strongly about something.
Thanks angie I appreciate your apology, particularly publicly. and explaining what you meant. I did take your comment literally. And when two people are feeling crappy we can both be too literal. Perhaps I shouldn’t have jumped to being offended. It’s hard not to think about something that has affected your life so dramatically and each day and medication and issues symptoms brings its own issues. Feel free to vent to me any time. My email is robynandrew4@hotmail.com
In terms of the sun in Australia it is quite harsh and the uv is very high. Yesterday it was 40 degrees Celsius here so perhaps they were worried me being in the sun would be much more damaging from any potential Side effects.
Angie said:
Robyn, I would like to publicly apologize for offending you. When I said, “O bull” I meant is as, O bull to whomever told you that you “can’t” go out into the sun. We can go out and enjoy our lives in the daytime, but with some extra caution.
I suppose my frustration came out and I worded it inappropriately. As many of us here I’m sure feel right now, as this disease progresses, I seem to be feeling the effects of more and more things that I “can’t” do and for reasons I hope you understand, being told that I can’t go out in the sun is absolutely freaking horrible to me. Again, I apologize. I think what I need is to take a break from thinking about it all the time because I’m getting bitter. I feel bad, I really didn’t mean it like that.
<3 is a heart, Michael
I’m really not a bad grouchy person, just overtly blunt when I feel very strongly about something.
I was hoping <3 was a cute little mouse face! I also think in Vermont my Dermy may think I am unable to get too much sun!
I love this site esp when I am feeling truly s---y like lately. I too tend to be blunt but would not mean to offend. I am also of an age that gets easily befuddled by things like laptops......... and little abbreviations or things that should be little mouse faces <3.............!
Robyn and I suppose the sun is more harsh if you keep washing off your sunscreen surfing!
I was taking MTX ten pills once a week. For the first 2half months I have doing great then almost to the day 3 mounts, I started getting sick I had a bad fever trowing up ten times a day hair loss I went to the Dr he said it was the flu so I thought ok keep taking the pills I will get over it. After 14 days I was still very very sick lost 20lb I could not walk and was johndos. I was taken to the hospital where they said the MTX was casing organ failure. Which is rare after detox treatments I was back up on my feat after two weeks.
Sheena, talk about severe ... now that is severe. I'm so glad they were able to turn you around fast, although that month must have felt like an eternity.
Stay well! What are you taking now instead?
Seenie
Gosh, Sheena, sounds like you had a VERY bad reaction to MTX. Wowser. I had serum sickness once with a sulfonamide. Sounds similar. At any rate, I don't do sulfa drugs anymore!
Seenie, I do know a guy who developed jaundice and was taken off the MTX he was using for RA. It took him a few weeks to recover, but he did come back to normal functioning. Unfortunately, he has scarring on his liver now. Not good. He's looking for a replacement list he can get on.
I do think my hair is thinner than usual, but it was thin to begin with, so hard to implicate the MTX in too much of that. I do wear sunblock when I go outside but have developed areas of blue/black skin on my legs that my dermie says is caused by plaquenil. I also have the brown spots everyone else is talking about. Docs tell me they may be old age, but can also be caused by plaquenil and, you guessed it, MTX. I also am developing migraines.--linked directly to the MTX. Apparently, my pharma got this batch from a different manufacturer. And medicare won't replace it.so I guess I'll have a few headaches before this bottle is empty.
Oddly, I read somewhere a while back that taking plaquenil and mtx together may be protective against liver problems developing from the MTX. Curious, isn't it.