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Posts posted by jefa

  1. I am not a doctor, Alice, but I believe that Barefut is right in saying that calcium channel blockers are not generally prescribed for calcinosis. On our Calcinosis page it says:


    Calcinosis in rheumatic diseases. While warfarin, colchicine, probenecid, bisphosphonates, diltiazem, minocycline, aluminum hydroxide, salicylate, surgical extirpation, and carbon dioxide laser therapies have been used, no treatment has convincingly prevented or reduced calcinosis. However, the approach to calcinosis management is disorganized, beginning with the lack of a generally accepted classification and continuing with a lack of systematic study and clinical therapeutic trials. PubMed. Semin Arthritis rheumatologist. 2005 Jun;34(6):805-12.


    There are quite a few articles and some interesting pictures on the Calcinosis page. One thing mentioned is that excess calcium is not the cause of calcinosis.

  2. Hi, Choice.


    Your post reminds me of advice I received at a neonatal clinic years ago - someone asked if they could continue horseback riding while pregnant. The doctor said, yes, by all means, if your body is used to horseback riding, continue to ride. But this is not the time to START horseback riding. So much matters on your original conditioning. Some, like Janey, may have an overlap of polymyositis which completely changes the way you must look at exercise. I agree with all who say that you must listen to your body. It is so easy to want to jump in with a big start to kick off a newly started exercise regime which is, ironically, the thing that stops many newly started regimes in their tracks. If you have been sedentary for any length of time, take it VERY slowly. But do try to move in as many ways as you can. Studies have shown that several small bits of activity throughout the day can be nearly as effective as 20 minutes of continuous aerobic activity. Moving is better than not moving.


    When I still lived in the states, there was an exercise channel on cable - one of the shows was chair exercises for people who were unable to get up and do the regular routine. My kids used to laugh at it, but I remember some of those exercises and do them now: gentle toe and foot movements, hand and arm movements that keep you flexible. When I stand in the kitchen preparing food, I do my old ballet stretches. Anything is better than nothing.

  3. Hi, Kamlesh - glad the surgery went well. I know you have been thinking about it for a long time, so it must be something of a relief just to have it behind you. I hope it does the trick for you. Now take it easy and enjoy your rest. How long do you expect to be away from work?

  4. Hi, Marji - Welcome to the ISN Sclero Forums if I haven't welcomed you already. You have already received much advice, but it appears that nobody has addressed your question number 5 about lower esophageal ring. I am not a medical professional, but it does seem that there could be a possibility of confusion or interaction between the diagnoses. According to the articles I read, lower esophageal ring may be congenital, but usually doesn't show up until around the age of 40. In this Medline Plus article on Lower Esophageal Ring it says that in some cases damage from GERD can contribute to it. While GERD is a major symptom of scleroderma, GERD and other esophageal problems can exist outside of scleroderma. The important thing is to treat the symptoms. It is, apparently, easier to diagnose lower esophageal ring with a barium x-ray than with endoscopy. It can be treated with dilation, also used in scleroderma related narrowing of the esophagus. I hope this helps.

  5. Hi, luv


    I have no medical training, but there is definitely something going on that is involving your joints and connective tissue, possibly even inflammatory arthritis. It isn't that easy to tell about the actual hardening of the skin from these pictures, but it is definitely worth having your rheumatologist look at it again, especially if it has been two years since you have seen one. Did they take x-rays at the time? If so, a new set may be able to show changes. A negative ANA does not mean that you don't have a problem, but your doctors should be able to tell something from the clinical symptoms.

  6. Hello, fri83, and welcome to the ISN Forums. Craig is right in saying that many of the symptoms you list are experienced by persons with scleroderma. I am not a medical professional, but many of the symptoms you list can have other causes. If you suspect scleroderma, you will get the best information from a scleroderma specialist. This link is a list of Scleroderma Experts - hopefully you will find one in your area. In the short term, your dermatologist is a good place to start and you should probably also get a referral to a rheumatologist on the basis of your joint pain. Your primary care physician should be able to help you with some of the individual symptoms such as the gastrointestinal involvement and Raynaud's phenomenon. In the meantime, read some of the other posts and feel free to post and ask questions.

  7. Hi, Jerrine. I'd like to welcome you to the ISN Sclero Forums. Sorry to hear about your recent diagnosis of scleroderma, although you must be somewhat relieved to have a name to put to your difficult symptoms. Burning and itching skin can certainly be part of the process. On our page for Xerosis (Dry Skin) I quote the following:


    In a Diffuse Scleroderma, itching may precede skin tightening, and is a temporary phase. The prescription drug Atarax (generic name: Hydroxyzine Hydrochloride) may help in this situation.


    Consult your doctor if you develop sudden or severe itching, as this may be a symptom of other things, such as a kidney failure or a liver disease.


    There are quite a few useful suggestions on the page. I am sure others will jump in with comments and also to welcome you to our group. Hugs to you.

  8. IHR is ill-health retirement, Tru. Jensue has already been approved for Incapacity Benefit which is the UK equivalent to US Disability. IHR would come from her employers and is part of her employment benefit if and when she meets the criteria. Whether it is approved will depend on what is advised by an Occupational Health Advisor, an independent resource which is contracted to advise the employer. Just being approved for Incapacity Benefit does not guarantee that IHR will be awarded. I went through a similar process and no matter how much the doctors said, they agency would never recommend the ill-health retirement for me. The only thing they could do was keep me on the books as unpaid until I reached normal retirement age, so I could collect my work pension when it came time.

  9. I have been wearing sheepskin boots all winter and sheepskin slippers around the house. I had to go out the other day, though, and it was too warm to wear the boots. As a result, I ended up with a couple of sore spots as my feet had grown unused to my regular shoes. I need some sheepskin sandals. :lol:

  10. Now that you mention it, I think they do look like index cards, but the scale isn't right for that, either. In training, I have called them briefcases or suitcases - can't remember which. In my mind I guess they were carrying new information. :lol:


    When I was training a group of secretaries to use computers for the first time, they kept talking about the 'save' icon being the little television. It was supposed to look like a floppy disk. Now we really don't have much use for floppy disks, but the icon is still there. I smile when I see it and always think of it as the little television now.


    I just looked at the images which are all labelled f_something. I am guessing now that the f stands for folder.

  11. Hi, Margo,


    The symptoms I have don't really give me enough information to guess whether my condition would be considered limited or diffuse. I agree with my doctor that whatever I may have is not very aggressive. We are treating with a DMARD (disease modifying anti-rheumatic drug - Plaquenil), an NSAID (etodelac) for the inflammatory arthritis, a proton-pump inhibitor (omeprazole) for the reflux and fluoxetine for depression which also helps with the Raynaud's symptoms. I haven't had any problems with digital ulcers. Calcium and vitamin D supplements were also prescribed to help prevent bone loss. I think worrying about what you 'might' face will cause stress which will certainly add to any potential problems. You may never have any major organ involvement. The disease manifests symptoms and progresses differently in everyone. Any statistics are only valuable within the precise context for which they were gathered. My advice to you is relax a bit. Stay informed and build a good relationship with your medical team, but don't let it overwhelm you. Enjoy life. :D

  12. Hi, Cordy. I can't add anything to the excellent information you have already been given, but I do know that yeast infections can be a nightmare. I had problems with them in the past whenever I had antibiotics. These days, I take a daily yogurt probiotic drink which seems to keep the normal flora in a good balance. Welcome to the forums - I look forward to reading more of your posts.

  13. Hi, Margo and welcome to the forums.


    You ask some intelligent questions. I don't know any more about morphea than what I have read here on the site. One thing I have learned, though is that you can't depend on anything to follow a set of clearly defined rules. I have given up worrying about a specific diagnosis (as my doctors seem to be unwilling to give it) but I am comforted knowing that they are looking out for symptoms of deeper problems. You have already been reassured that heart and lungs are okay. My rheumatologist said that he is not worried about heart and lungs because they will present with warning symptomology. Kidney issues are important to watch for as they can sneak up on you. He has me checking my blood pressure regularly.

  14. Wow, luv - blood pooling in the hands for too long? I hope you have since found new doctors. I am sure those in warmer climates will attest that cold is not the only thing that triggers Raynaud's attacks - if anything, warmer climates are more likely to depend on air-conditioning, which for me is the worst. And everybody uses freezers and refrigerators. Anyway (or 'anyroad' as they say in my neck of the woods) you are right about this being an extraordinarily warm and open forum.

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