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beedee

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Everything posted by beedee

  1. Hi There, I haven't been on these boards for several years. I struggled with morphea that was spreading somewhat aggressively from April 2007 to February 2008. After various ointments, light therapy, steroid injections and finally methotrexate, it burned out and aside from my scars, wasn't really something that I would think about daily anymore. The morphea started on my chest as a bump under the skin, which grew to the size of a plum. The area looked faintly bruised as well. Although it remained on the left side of my body, it eventually spread to my upper arm, wrist, palm and ring finger. The spots on my hand and chest are still quite noticeable and hard. Earlier this weekend, I noticed a bump (about the size of a large coin) under the skin on my right forearm, close to my elbow. Although I am quite pale, my forearms are very freckly, and I don't see any discolouration at the surface. The bump feels exactly as I remember the bump on my chest feeling when the morphea started years ago. I will likely get this checked out in a month or so if it persists, as I am traveling for work. I no longer see my dermatologist as I have moved to a different part of the country. I've been doing some research again. is it possible for morphea to return, and could this be morphea even without the bruising or pigment changes at the surface? Any thoughts and experiences that you might have would be most helpful. Thanks!
  2. Hi ez62, I have morphea, and it is in the palm of my left hand among other places. It has left parts of my palm very very hard. Not much discoloration, sometimes some tiny purplish spots, but I think that might be from the steroid injections they were doing in my palm. But in the upper palm, there are a few very hard bumps, I know what you mean by the tendons (or whatever) seem more pronounced. It is in my ring finger as well, and the skin looks like it has more lines, and is kind of tight. The movement of my finger has been restricted as well. I do not have raynauds, this is just what the morphea has done.
  3. The english was great! :) One thing I have found with morphea, is that it is incredibly unpredictable! When my one spot of morphea spread all over my arm and my hand, my dermatologist seemed surprised and became more aggressive with treatments. In my opinion, I don't think physicians can really tell if the morphea will actually never come back, I could be wrong with that, but it does seem like a very uncertain disease. My ANA is negative, and I don't think it necessarily determines how bad the morphea is, there are people with full-blown systemic scleroderma who have a negative ANA. I could be totally wrong on that, please correct me if I'm wrong. It sure is interesting, isn't it?
  4. Hi Loyhargil! I have localized scleroderma (morphea), as well... We've been treating it for a year now with different methods and nothing is really working. I was diagnosed when a year ago at 19 years old. I don't have a whole lot of symptoms besides the spots themselves, I do find that the areas where they are do ache sometimes. I see my dermatologist on a regular basis, and I am constantly reading and researching. I am so happy to hear that your general practitioner appointment went well today! I started going to my general practitioner in February, when he opened his clinic, he had been in the emergency room before that. When I went to him first, he didn't mind admitting that he has never seen morphea before, but he knew what it was, and is very interested in it still. I guess I am kinda educating him on it. haha As well, regarding the blood work, when I had a lot of tiredness and the morphea was getting more agressive, my dermatologist became concerned and ordered the bloodwork to check for possible systemic scleroderma. My ANA and ENA were checked as well, some other ones I can think of are SCL-70, CBC, and ones that indicate organ involvement (I think)... Mine all came back good. But I am so happy to hear that things went well, your general practitioner seems really on top of things, and we need that!
  5. Hi, I'm having this problem too, not sclero-related I don't think, as I have morphea. I've been seeing my general practitioner monthly since February because of it, I don't know how long it has been going on because my old general practitioner was very slack and never took my blood pressure. My BP is borderline, as my general practitioner calls it, and he is keeping a very close eye on it for now. It is usually 140/90, sometimes a bit higher, sometimes a bit lower... Stress certainly plays a huge role for me, but I'm not sure how seriously I should be taking this! Danielle
  6. You are certainly not the only one, the majority of us have had our share of terrible doctors. Luckily, in Canada, we do not pay for every dr appointment, it is covered under our government health plan. Anyways, my experience, was that my morphea symptoms started, and my general practitioner had no idea what was going on. The morphea started as a bruised-looking spot on my breast, as well as a hard bump underneath the skin. The bruised spot became a couple bruised spots, and the bump underneath the skin kept getting bigger. I kept going back to my general practitioner with nowhere else to turn, sometimes he would tell me it is muscle, sometimes it was just breast tissue, and sometimes, he would tell me there was nothing there at all, his story changed every time, and he got really offended when I disagreed with him. He also sent me to a useless surgeon, who absolutely refused to do a biopsy until I saw a dermatologist, which had a wait of 6-9 months, and the bump/thickness in my chest was getting worse and worse, and tripled in size. My general practitioner even complained about the surgeon after, making me wonder why he sent me to him in the first place. Yeah, it is discouraging when your doctor doesn't seem to be on your side. I lucked out and a dermatologist opened a clinic in my area, he diagnosed the morphea on the first appointment, and did a biopsy to confirm. I've been going to him for a year now, and although we haven't been really successful with treatment, he is doing an awesome job!!! He is very to the point, and has always told me what to expect, and I really appreciate that. He's an awesome physician, and he knows a lot about morphea too. And as for my general practitioner, he's become my former general practitioner. I just avoided going to him after I saw the dermatologist, and finally found a new general practitioner in February, who is the best! He is so compassionate, and he seems to know his stuff. He knew what morphea was, but I am the first person he has seen with it. But he has a lot of interest in it, and isn't afraid to admit that he doesn't know a ton about it. He is great to talk to too! He keeps an eye on things as well, which is really good, and it is the way it should be. I learned when I went to him, that I have borderline high blood pressure, my former general practitioner never ever checked it. I've been seeing him monthly and we're trying to get the bp down. It's just nice to have someone on your side. It took some time, but the doctors I have now, were totally worth the 5 months that I waited to see what was wrong with me. It does get better, and you will find a doctor who cares. Sending lots of hugs to you! Good luck! Danielle
  7. Hey! I live in an area that definitely has the seasons, our winters can be bad, but our summers never get really hot. I did go to Florida with the morphea as well. I haven't noticed a difference to be honest, but I do not really have itching, a bit of aching and tightness, but no itching, really. I feel very strongly about the stress thing, I've had several things going on this year, and I think they certainly contributed to the new spots, and the difficulty of getting rid of the current ones. Let me know if you're wondering anything else.
  8. Very interesting, mine is all on the left side of my body. I tried several topical creams as well, as well as light therapy, and steroid injections(about 25 at a time). I don't have any itching really, just a bit of aching. I do have a bit of tightness in some spots. Everyone's morphea seems to vary so much! My current treatment is Protopic ointment, and 5mg per week of MTX, as I just started it, I have one more week of 5mg, and then will move up to 15mg of MTX. Just hoping my body will tolerate it!
  9. Hi Whitney, As the others have said, I too, am glad you got the courage to post, its a great support system. My dermatologist has been trying several different treatments for a year now, and nothing has really worked. I know they always seem to start "small" with treatments, and work up to the more aggressive treatments. My dermatologist was really holding off on the methotrexate, he didn't want to put me on it until he tried everything else first. I know how you feel about the new spots, mine seemed to be linked with stress (I think), and when I get stressed out, I'm very nervous about getting the new spots. It's hard to see a new one, because they are so hard to treat. Mine are all on one side of my body, I've been meaning to ask my dermatologist about that. If you don't feel comfortable using the forum quite just yet, feel free to send me a private message. Just click the green button in the bottom left corner of this post. :) Danielle
  10. Hi Whitney, I have morphea as well, diagnosed about a year ago, and have tried numerous treatments (steroid ointments, light therapy, steroid injections, immunosuppressant ointments), I just saw my dermatologist and he put me on methotrexate, which was his last resort. My dermatologist has told me several times that it is very very hard to get rid of. What treatments have you tried? Danielle
  11. Hi Jess! I have morphea as well, and my dermatologist prescribed Protopic for me, which is also an immunosuppressant ointment, like Elidel, from what I've read. I've been using it for a year now, along with a bunch of other treatments. Protopic also has the cancer warning, and it made me nervous at one point, but I think it is a truly rare occurence. I've seen my dermatologist on a regular basis for the past year, and he wants me to keep using it, so it can't be too harmful with proper use. He did have me on steroid ointment which for several months, but he told me to stop using it because it is thinning my skin. But the protopic, he says is fine. I do use it twice a day, 3 weeks on and 1 week off. The week break is important he says. It is so important to have a good doctor, and I hope you find a great one soon! It surely makes ALL the difference. I had a disaster general practitioner before my current one, he was terrible!!! Its okay to be bitter, all of this is frustrating for sure! Hang in there, and let me know if you need to know anything else! Everything will work out! Danielle
  12. Hi Nae! Glad to hear that your control visit at the hospital went well. I have morphea as well, but it is on my arm, hand, and chest, not on my face, and although this is completely unrelated to the morphea, I had laser on my face on August 21 for rosacea. Rosacea has caused my face to look flushed all the time. But anyways, the laser is supposed to help with the pigmentation, to help my face look more normal. I have only had one treatment and it will take a series of them to help the rosacea. I know there are several types of lasers. The one I had, was called IPL (Intense Pulsed Light), which I have read is not actually a laser, but if just as, or more effective than laser. I don't know anything about laser for morphea, but I could see it being effective it if is safe, as lasers are excellent at correcting pigmentation. Let me know if you have any questions! Danielle
  13. It's probably worth mentioning too, that the light therapy I do, is in a stand-up booth, and not a bed. And there is a HUGE difference between UVA and UVB... I think UVB is what causes the burns at the surface of the skin, while UVA goes much deeper. Probably why UVA seems to be more effective... Danielle :)
  14. Hi Jennifer! I have been thinking about you and your daughter in the past few months, wondering how that appointment went, that you travelled to New York (I think) for. I don't come on these boards too often, so I probably missed the update if your posted one. Anyways, I have been doing light therapy since January. So here are my answers to your questions! 1. The type of light therapy I am getting is UVB light therapy. 2. I am assuming it is supposed to suppress the immune system somehow. To be honest, I am really not sure, exactly how it does work. 3. The session length increases over time, as well as the intensity level. They increase it gradually. I started off at just 2 seconds and am just over 2 minutes now. I was up a bit higher, almost 3 minutes, but I was gone away for a few weeks and they had to reduce it again. 4. I live in Canada, and this is provided on my provincial health plan, so seeking insurance coverage does not apply to me. 5. My morphea is not in one small area, so I have to use a booth. There are handheld machines though, I think. 6. Just to be VERY careful with regards to burns, I have gotten some pretty bad sunburns since I started the UVB therapy, so you have to keep a very close eye on it. And I just wanted to let you know, that although this may sound discouraging, but I have been going for 7 month and am yet to see much with regards to improvement. I am also doing steroid and immunosuppressant ointments, and rounds of 20+ steroid injections every 6-8 weeks ( ouch!!! ). I am yet to see much improvement. But, I have heard that UVA light therapy is more effective than UVB. The next time I see my dermatologist, I will be asking him if I can stop the light therapy. It just seems to be a lot of skin damage for nothing, as I don't see it doing anything. He did say before, that even though there seems to be no improvement, he thought it was preventing new spots, but I am tired of the sunburns... We'll see what he says anyways... If you have anymore questions, don't hesitate to ask me! Take Care! Danielle
  15. Angie, I hope you will get to see a different dermatologist soon! This one was a complete waste of time for you, and We don't need any more stress than we already have. One thing that I know is not true, is his comment that morphea spots are brown. Mine are not brown, they look like faint purplish bruises. Some are almost impossible to see though. My dermatologist never looked at my spots on my last visit, he realizes that sometimes they are hard to see, and I am the one who knows best about the progress or improvement. My new general practitioner however, does look at them. He isn't familiar with morphea and I am the first person he has seen with it, he just started his practice a couple of months ago. He is very interested in the morphea. If you have any questions, feel free to PM me! Danielle
  16. Hi Angie, I encourage you to find another dermatologist, it's very important to find one who is on your side, and one that will not just assume this can't be treated. That is terrible that he told you that there was nothing that could be done! I have morphea as well, what symptoms are you experiencing and what does the skin look like? I went for 5 months to my general practitioner did not know what was wrong with me and also insisted that I just deal with it, but I managed to get a referral to a dermatologist. When I went to the dermatologist, he looked at it and knew exactly what it was. He told me that it is likely that this will burn itself out in 5 years or so (no one can really know if this will happen or not), but he wants to speed that up and get it under control. He first started me on an immunosuppressant ointment, and then a steroid ointment, then a much stroonger steroid ointment, then UVB light therapy, and I just had steroid injections on Friday. Right now I am on the immunosuppressant and stronger steroid ointment, doing the light therapy, and now the injections. If these injections do not work, he will try a stronger dose, and if that doesn't work, I will have to go on methotrexate. I know that doesn't sound promising, considering all of the treatments I have been doing, but it is treatable, and I don't think that it is always this hard to get rid of. I have seen very little improvement, but I do think that the light therapy is preventing new spots. The reason you should not leave this alone, is that morphea can spread, mine has spread from my breast to my hand and arm. I went from one spot to ten! I think morphea can be hard to treat, but I don't think it is impossible to treat. Please get a second opinion. My dermatologist did say that he has found the steroid injections to be effective. They are painful, I had to get about 25 injections, but will be totally worth it if it works! Good luck, and sending HUGS your way! Danielle
  17. I'm actually feeling much better already. Unfortunately, I will probably have to get these injections a couple more times, it depends on the effectiveness. I just hope this is what gets rid of the spots. As for methotrexate, I'm not really afraid of it, it just seems like it has nasty side effects, and this liver thing is a little scary. Truman, how do they monitor your liver while on it, is it just bloodwork, or do they have to do liver biopsies? I do not have systemic scleroderma, just morphea. It has spread considerably, and I have about 10 spots of thickened skin, that look like bruising. Some of the spots are very very hard underneath. Is methotrexate commonly used for morphea? Thanks! Danielle
  18. Hello everyone, I went back to my dermatologist friday and the appointment went well. I was so nervous about this appointment, and part of that was due to the fact that I knew I had to get steroid injections for my morphea. He pretty well said the same thing he has always been saying, so there were no surprises. I knew that steroid injections were the next step and then it was methotrexate, if needed. He talked about the dangers of methotrexate, just in case I have to go on it. He had prescribed Kenalog-10 steroid injections for me to bring to the next appointment if there wasn't improvement. So I picked them up on my way to the appointment. He said that he has seen a lot of success with the injections in some of his other patients with morphea, which was nice to hear. He said if the kenalog-10 doesn't seem to be effective, he will try the kenalog-40, a stronger dose. The nurse did the injections and she had to do several seperate injections around the perimeter of each spot basically. I lost count, but I know it was more than 20 injections, I am thinking around 25. It was very very painful, as my flesh is so hard in those areas. I am pretty sore and stingy tonight and I have several bruises. I am just glad it is over and hopefully we'll be able to avoid the methotrexate. I have to continue with the ointments, and the light therapy too. He said that even though I don't see improvement from the light therapy, it is likely preventing new spots. I never thought about it this way before. I have to go back and see the nurse on June 13, likely for more injections. We just have to see how the improvement goes. Just thought I would let you know how it went! Danielle
  19. Just wondering if anyone has recieved or heard of this treatment for morphea, and how effective it is. Thanks
  20. Hi Jennifer! So glad to hear this, and I hope all goes well. Although its frightening, its so important! I'm sure everything will be okay and you will have a fun trip, some mommy-and-me time! Please let us know how it goes. As for the navigating, can't help you there, I'm up in freeeeezing Canada! Danielle
  21. Hi Emmi! My dermatologist is also hoping to improve my current spots and prevent the new ones. I don't expect to see any improvement soon, I think that if it does work, its going to take awhile. I don't have really high hopes, but I will be very happy if this works. I think that there is a difference between the type that you'll be getting and the type that I have been getting. I've been there 5 times and I am only up to 15 seconds. I would think that the highest it will go will only be 5 minutes or so. I do think its the same idea though. I will definitely let you know how it goes! Good luck with it! Danielle
  22. Hi Emmi, I am unsure what type of scleroderma you have, but I have morphea and I just started light therapy last week. So I may be able to help you understand this a bit better. I am assuming you have some sort of skin involvement and that is why they are recommending the light therapy. My dermatologist also wanted me to do light therapy, I do UVB light therapy, and I am not sure what the difference is between that and SUP-light therapy. I was ready and willing to start this because my morphea keeps spreading and I have heard that it can work well. My dermatologist always tells me what is next if the current treatment isn't working, and it helps to know what to expect. I go to light therapy 3 times a week at the physiotherapy department of the hospital in a city I live near. I only had my 4th session today, so I am still not sure if it will work or not and I am assuming this will take quite awhile. My first session was only 2 seconds, and now I am up to 10 seconds. The light therapy I get is very quick and doesn't take much time. My dermatologist hopes that it will improve the spots I have now, and also prevent new ones. I am also on 4 different ointments, 3 steroids and an immunosuppressant. 1 steroid is weaker and gets used on my chest, and the stronger ones get used on my hand and arm. I'm sorry to hear about your doctor troubles, and I hope that things get better soon! Please let me know what you decide regarding the light therapy, and let me know if you have any more questions! Take Care! Danielle
  23. The UVB therapy is for morphea (localized scleroderma). With morphea, it stays mainly in the skin, and I have morphea spots on my hand, arm, breast and above my breast. They have a bruised/discoloured appearance and are thickened underneath. It started in my breast around April and has spread a fair bit since then. I am on four different ointments besides the light therapy. I am pretty sure UVB and PUVA are used similarly. I guess it just depends on what is available in your area. The machine I use at the hospital is a booth. I have a good few spots and the booth treats them all at once. I am doing they 3x weekly for 3 months. I really hope this helps my morphea.
  24. Hello again! I am so happy it went well, there's no reason why it wouldn't have, but I hate not knowing what to expect! It stresses me out! As for the maximum time they will do it for, I really don't know, but I do know how they determine it. Apparently the procedure will make you "red" and it lasts about 8 hours. They will know I am at my "limit" when this redness lasts much longer than the 8 hours, and then we won't increase the time anymore. I am extremely fair skinned with red undertones (think rosy cheeks :( ), so I don't think it will take very long to get to this point. As for the procedure, it is quite simple. Mine takes place in the Physiotherapy department in the hospital and it is administered by a Physiotherapist. Mine will be 3 times a week for 12-ish weeks. Not sure if my dermatologist will want to continue it after I see him in April or not. Anyways, the physiotherapist sets the time and settings. I just had to undress the affected areas and go into this booth. I had to wear UV glasses and close my eyes as well. When I closed the door, it starts, and then it just stops when the time is up. Pretty simple and quick. I only noticed a bit of redness this time, and I am sure it will show up more as the time increases. I go back tomorrow and Friday. If you have anymore questions, just let me know! :) Danielle
  25. Today was my first light therapy session and it went well! I hate change, and I was nervous about this, not knowing what to expect... I was only in there for 2 seconds :o, but the duration will double each time. Hopefully this works! Just thought I would let you all know how it went! Danielle
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