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About Monica38

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    Bronze Member

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    Pennsylvania - Northeastern
  1. Hi, it has been a while since I last posted here. I have morphea, the flare started on 2006 I guess, but this year, I started to have dry eyes, dry mouth and my Schirmer test indicated a problem. I finally saw a good rheumatologist who did a lot of bloodwork. I'm seronegative, they say my health overall seems okay however, I have the classic Sjögren's Syndrome symptoms, dry eye and dry mouth.. They didn't push me into a lip biopsy. I dont feel like it anyway, however, for now I was not given any meds. I have to go back in a few months. I am not on Plaquenil, or other drug yet. On the other hand, my dermatologist said last year, if I get more morphea, then I can try a new UV light therapy that he said will work great, or go on methotexatre. I was excited that I could try UV to stop the morphea from keep going, but then I read somewhere that people with Sjögren's Syndrome can have reaction from the sunlight??? and also any UV light?? THat came as a surprise to me. What sort of reaction or problem could one get by being in sunlight?? Have anyone experienced such reaction? Thanks Monica in Pennsylvania.
  2. Aw I didn't know about CT scan and cancer... My ophthalmologist ordered for me, to check my eyes, because I have high myopia but I'm wondering if he could have ordered another type of imaging service. I was trying to get my internist doctor to order a lung CT scan, but the insurance keeps denying, probably because I already got an X ray, that another doctor said was normal, and that I had just a little bronchitis. I will have a PFT test, so I guess the idea of a CT was not a good one, uh? I need to slow down. Tomorrow I am going to call my ophthalmologist about the eye scan and see if there is another alternative. Thanks.
  3. I was wondering, if the insurance decided not to cover a CT scan, because they think you don't need one, if you had to pay how much do you think a small clinic would charge? Monica
  4. I was wondering about the same question. People with any autoimmune disorders, what is the best thing to do? I was wondering if wearing a mask would solve the problem.
  5. Hi, Here I am again. I already got a lung X ray and a regular doctor says it is normal. I told him I may have Sjogrens. He said yes it seems you have bronchitis, gave me erythromycin. I wish he had given me another antibiotic less full of side effects. I have a PFT scheduled with another doctor, this week and soon a Lung CT scan. How does the PFT works?? Does it hurt?? What if a person is very very very very sedentary? I wonder if the lack of any activity reflect in these results.
  6. OH, my doctor did a blood allergy test. It didn't detect any allergies. I forgot to say, the ophtalmologist put a silicone plug in my tearducts to see how it goes.. It will dissolve in 2 weeks. Today I got an appointment with a rheumatologist, only could get for end of June. This time I had a hard time to get the appointment. Maybe these doctors are in high demand or what. My closest appointments now are with my dermatologist and internist, So basically I'm working with these two for now, and I want to see if I can get the most out of these appointments, so when I go to the rheumatologist I will have more information. I wonder if now that I was diagnosis with this Sjogren's, what is the progression of this thing, besides the dryness issue? I wonder what tests the rheumatologist will do? Do they check GI? heart, renal function, or not? I'm worried thinking about how I'm going to monitor my health, wondering what else I may have, and what should I keep an eye on, and when to run to a doctor... What type of checkups do you guys get and what's the frequency? And do you guys take any immunosupressant? Antidepressants or something to help sleep? Sorry for so many questions. I hope I'm not being silly asking all these things. But after I read all about these things, it is so much information, overlapping conditions, this and that, that it all confuses me in the end. Monica :) :) :)
  7. HI, Well, as I have morphea for a few years now, I'm always afraid of it turning into systemic scleroderma. I realized that I may have the Sjogren's, at least my ophthalmologist did the Schirmer's test. So I don't know. I wonder if others with morphea here have Sjogren's? So Jeannie, you have Sicca...did they ever did the lip biopsy? And for how long have you had that, and do you take any medications for controlling that? Monica
  8. Hi there... Guys, would you mind if I jump in? I really have no one to talk about it... What do you guys think? I'm trying to make my doctors help me find out all that is wrong with me besides generalized morphea. I saw my dermatologist last month, and asked him if I had SS. He saw no evidence but he ordered the ANA test which came back negative. He said, in any case if my morphea continue spreading he would like to put me on methotrexate. I came from the ophtalmologist, and I think I have Sjogren's...grrrrrr. In the past 2 years I was diagnosed with seasonal allergies and a little bronchitis. All year around I'm always clearing my throat and sometimes I cough. For over a month now, I've got really dry eyes and I couldn't wear my contacts. So I went to my internist right away and addressed my concerns of morphea and SS asked if she could do a more complete blood work etc. After 3 vials of blood, everything came back normal except for the high cholesterol. So, I went to the opthalmologist with all my blood tests, he did the Schirmer test, to check tear production and he said I should get tested for Sjogren's. The next tests I'm scheduled is for a Lung function test on next Wednesday and they will schedule for LUNG CT Scan next month. But I guess I'd better find a rheumatologist quickly and who knows, how many more tests I will have to get done. I feel a little down in the dumps. Oh well, sorry for the long email. It is frustrating sometimes. Monica
  9. Thanks for your reply... I wrote here before :-)) Well, I never saw a rheumatologist, but I will probably see one from now on. I never noticed any change of colors in my hands, ust that they are always cold. Thanks for chimin in! Monica
  10. Hi, I have morphea and I was wondering how do I know if I have Raynaud's? I was diagnosed in 2006 when the patches were spreading on my body and the dermatologist took a look at my hands, but didn't say anything. Does any person that usually has colder hands and feet have Raynaud's? I'm thinking about my hands now. I always had cold hands.They are normal, no swelling This winter the skin on top of my knuckles got irritated, reddish, scaly this winter, since I abused them by washing dishes, cold and super hot water, the winter itself. It looked like dermatitis or irritation. I didn't make anything of it. When I started to see some different color then I was scared, I thought it could be a new morphea patch coming up. I tried to get an appointment with the dermatology sooner but they didn't have opening at the time. While I was waiting I used some left over creams I had for morphea, The reddish skin went away. But now I look bellow the knuckles you know that skin area, it has a shine to it, has become a little shiny. I can see better when I make a fist. So I'm very scared, wondering if this could be the localized morphea or symptoms of SS. I haven't been able to sleep for weeks with such worries. I have dermatologist on Friday. I am going to make a list and ask for test. Sorry for the long post. Any input? Monica
  11. Hey thanks for the speedy reply. well, I have been through all links. and reading so much on morphea, that I think I am getting to anxious. I read a lot but I have not really talked or met anyone with morphea and checked what has helped them. Besides dermatologists, what doctor can help screening for other conditions? I see people go to rheumatologists and pulmonologists. Well, I am also going to see an internal medicine doctor next week, and I since I'm going there for my little aches and pains, I want to ask if she could test my blood for anticentromere antibodies (ACA), and other things, to check my health. I did read that people with morphea rarely progress to systemic sclerosis but I guess it is time for me to check that, or I will drive myself nuts I think Im going to get that article, and read it, and see if there is some good news in there! I guess $35 is not going to break the bank ahahahaha Take care you guys! talk soon! :blink: ;)
  12. Hi, I'm 38, I have generalized morphea. I was diagnosed with a biopsy in 2005 or 2006 because it was spreading rather quickly. I was prescribed two expensive drugs. But, well, I think the skin of my hands (actually the skin on top of the knuckles) is getting weird, a bit inflamed, is dry, and seems a bit rougher for a few weeks now. Maybe is the morphea being sneaky again? I got an appointment with the dermatologist in two weeks. Couldn't get earlier. In any case, the dermatologist seems to know a lot about morphea but I'm researching a lot in order to ask him about phototherapy or other options etc. In any case, I have a question... Did anyone with morphea buy and read this article? I wonder if I can find the info elsewhere? If not I think Im going to buy the article. It is from September, 2008 and is in the page on morphea treatments under bosentan: "New developments in locallized scleroderma" Talk soon! Positively Monica
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