Lupus and Scleroderma ?

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I was diagnosed 2 months ago with discoid lupus. Since then I have been taking Plaquinol and Prednisolone. Joint pain has almost disappeared. But my muscles are always stiff and what is worrying me most is raynauds im my hands anf the thickning of my skin ( hands, wrists and low arms). I also have many white spots and frekles-like all over my body. I have heartburn, breath problems and my ribs do hurt. I'm swollen and my breasts are becoming bigger and bigger. Has anyone already have this? Is it possible that I've got fibrosis / scleroderma symultaneously with lupus?

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12 Replies

  • Posted

    Hi Margarida,

    My Rheumotologist feels that i may have Scleroderma but my bloodwork has come back negative. I was given a website by someone on this forum. I reached out to them and they are very good about giving you information. I need a second opinion and they have provided me with a list of doctors in my state specializing in the disorder. Hopefully this will help me rule out wheather or not I have this. God willing I don't. Maybe you would like to get in touch with them. They may be able to help. Its the Scleroderma Foundation. Let me know if this helps.

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    • Posted

      Many thanks Nu2this.

      I'm Portuguese so your list of spevialists won't me help. However I will take a look at the website of yhe Foundation you are referring yo.

      Next Thursday I'm doing blood/urin work again. And I'm seeing a good dermalologist. One week after I have apt with my rheumo again to see the results. I phoned her yesterday and she said it was negative for scleroderma when she diagnosed me with lupus last September. What worries me is that from what I have read both lupus and scleroderma make people lose weight and as I said in the previous post I am always swollen as if I had water or sth filling me up. I feel there is sth more than lupus.

      I wish all the best to you. And that your tests may be negative.

      Big hug

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    • Posted

      Hi Margarida

      I dont really know anything about lupus but i do know about scleroderma. I was diagnosed in july. My blood tested positive for centromere and this is common in limited systemic scleroderma. Like you i also suffer badly with raynauds in both hands,have tight skin on hands and feet which are also swollen and muscles that constantly ache. There are 5 tests for scleroderma and you only need 2 or more for a diagnosis. 1 raynauds 2 tight skin 3 reflux 4 visible small red veins on face or in your mouth 5 calcification. A good doctor will also check your nailbeds under a microscope to confirm. The scleroderma foundation is very helpful so worth a look online. There is no cure however with regular tests they can treat the symptons and you can life a long and happy life.

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    • Posted

      Hi Mitch. Thanks for responding. Your testimonial is very helpful. I have all your symptoms although my Raynaud's hasn't reached my legs and feet yet. Neither of them are swollen nor with colours. Let's wait for the blood work, Rx and ECG in two weeks. And for the dermatologist in two days but I really worry about my lungs. At this point I only pray to God to give me wisdom as well as to my doctors so that I get a diagnosis as soon as possible. I am a high school teacher and these last two years have been the worsst in my entire life. I am 52. It all began in 2015. Always tired. Brain fog. I had a sleep apnea last December. Since then I have never been the same teacher/ person. From what you wrote, I infer that you are a positive person dealing with your issue. That's very encouraging and good for you and the people who surround you.

      Cheers!

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    • Posted

      Hi margarida

      Hope you get sorted soon. I to am 52 and just wanted to mention that all my symptons improved when i started Hrt for the menopause. Although no proven evidence there is a forum were lots of people are saying the same and i have to agree. I now only take adalat for my raynauds, and physio for my aches. If you find that you have scleroderma you doc should send yoy for a mri on your lungs and a breathing test. I had all of these and more as this desease can involve your internal organs.

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    • Posted

      Thank you Mitch.

      I didn't know that about HRT. It's a very useful suggestion.

      Tomorrow I'm visiting a dermatologist who is also treating my rheumatologist. She is also a lupie. I was done a breath test in July but the technician said everything seemed fine. However, I didn't get the report as I was so sick and the weather here in PT was so hot that I almost forgot to tell my family to pick it up to me. The x-ray to my lungs is next week. But the mri must be more accurate, I guess...

      I'm really happy to know you have controlled your disease. That's great.

      Big hug?

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  • Posted

    Hi ,

    Can you please tell me what HRT is? Also do theses symtoms mimic menopause?

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    • Posted

      Hi New2this!

      Ur stands for Hormone Replacement Therapy. Something that is still contoversial. However, everyone has to weight benefits and risks. One of my doctors who is an expert here in PT is completely in favour of HRT.

      Hope it helps

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    • Posted

      Hi nu2this.

      Hrt is hormone replacment therapy for those of use that are going through the menopause. Scleroderma seems to respond positively to homone replacment . Although there is no proven evidence of this there is a forum with lots of positive feedback and i have to agree. I thought all my symptoms were the menopause before i was diagnosed.

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    • Posted

      Hi Mitch,

      I am 49 and may be going through menopause. I am in the process of getting a 2nd opinion on a Scleroderma diagnosis although none of my bloodwork has come back positive. My manometry did not find evidence of esophogeal dymortility. I was wondering in what ways has HRT has had a positive responds to the disease? Thanks for your insight

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    • Posted

      Hi

      Mainly aches and pains now bearable also my extreme fatigue and foggy head has lifted. My swollen tight skin on hands,arms,feet and legs is still tight but hasnt got any worse. My scleroderma is not affecting any of my internal organs and may never only time will tell

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