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Posts posted by jefa

  1. I have been thinking about you since yesterday, wondering how things were going. Glad to hear it all went well (except for the pain -- they could have at least given you a bullet to bite on). I am so happy for you. Now kick back and relax for a bit -- you deserve it!

  2. My understanding is that the use of primary or idiopathic means that there is no apparent underlying cause for whatever disease is being described. For example, primary Raynaud's, experienced by a much broader range of the population stands on its own, while secondary Raynaud's has some other underlying or root cause (e.g. lupus, scleroderma).


    The word idiopathic means "of unknown cause" This article on Merck Online does a great job of explaining primary or idiopathic pulmorary fibrosis.


    An ISN link to this PubMed abstract looks studies outcomes of Pulmonary arterial hypertension related to scleroderma (PAH-Scl) compared with the idiopathic form of PAH (IPAH)

  3. Hi, Joe


    Sorry to hear of your rough luck involving kidneys. What you describe sounds like acute renal failure (ARF) often referred to as Scleroderma Renal Crisis in scleroderma. This is actually more common in sclero than Chronic Renal Failure. The former comes on very fast, as you have experienced, and is very scary and life threatening. The latter comes on slowly with few initial signs. The treatment for Acute Renal Failure is ACE inhibitors and Altace, which was prescribed by your doctors is one of these. There are many though, and Altace may not necessarily be the one of choice for a particular patient.


    Here is a link explaining the difference between acute and chronic renal failure, which says about ARF causes:

    "Prerenal factors (factors that are primarily outside the kidney and before the blood reaches the kidney) that interfere with renal perfusion (for example: fluid and electrolyte depletion, hemorrhage, severe septic infections, cardiac or liver failure, heat stroke, fluid depletion due to burns)."


    With reference to safe daily intake of Sodium, 4000mg per day is not low! This previous link says:

    "The National Research Council of the National Academy of Sciences recommends an approximate daily range of 1,100 to 3,300 mg of sodium for adults. For people with high blood pressure, hypertension experts are recommending no more than 2,300 mg of sodium a day. The average sodium intake in the United States is between 4,000 and 5,000 mg per day."


    (Thanks to ISN News Guide, Sherrill Knaggs, for her thorough research on this subject.)

  4. Oh, Sweetie. I know you must be completely frustrated by this. What was the reason they gave you for not being able to do the infusion -- was it just because the insurance wouldn't pay? There is no good excuse they couldn't have called you, but that has happened to me before with appointments. I have taken time off work and travelled an hour by bus only to find out that my appointment had been rescheduled. I had on file to always call me at work, but they had called my home.


    I don't think you are doing anything wrong, but I would stand up for your rights, demand answers, if I were you.

  5. You raise a good point, Erin, about movement. I just went back and read the whole page (the one linked to by Sweet and Joe) and found this great memory aid for all the ways you can rewarm from Raynaud's attacks:


    Think W-W-W-W-W-Warm!

    Wiggle - Windmills - Warmpits - Warm Water - Warmers - Wax

  6. Sweet has given you a good link. This topic comes up quite regularly on the forums, so do have a search through the boards and read all of the other comments people have made. There are some very useful suggestions here.

  7. I think it is a good idea to take any suddenly appearing or unusual pains to the appropriate doctor. It is nice to compare notes, but when it comes down to it, the doctor should be best suited to help us out. Hope you are feeling better soon.

  8. I am glad you were able to get some definitive results, even though it means you have another problem for your portfolio. There are a few people on site with Hashimoto's, so hopefully they will step up to share their personal experiences. Good luck with the tests and biopsy.

  9. Glad to see all of you posting here (Barbara, Craig, Gordon, Sharon, Jess, Emmie, LoriAnn and Joe just on this page). It is so nice to be able to find out a little more about each of your lives. I encourage you to read through from the beginning and get to know the rest of us. Hugs to all and..

  10. Hi, Joe. Welcome to the Sclero Forums. I am glad you have found us and feel comfortable enough to start posting right away, though very sorry to hear about your problems with scleroderma and Raynaud's. As I am sure you will soon learn, this is a great place to share information and support. It would be nice to have you post somthing about yourself in the Getting to Know You thread which is pinned at the top of the list.

  11. Hi, Lynda. I see you have been giving some excellent advice by Janey and others, especially the note about prednisone. There are so many things to consider with the broad spectrum of symptoms dealt to sclero patients. What may seem like a great treatment for some symptoms can create other life threatening risks. Working with all of your doctors to come up with the optimum solution is a real balancing act. At the end of the day, you are the only one who can make the decision. Good luck with it.

  12. AS was one of the things in the list of possibles when I was being handed pamphlets about rheumatoid arthritis (which was the original possible diagnosis for me). I think scleroderma was near the end of the list. I used to stop reading before I got that far. As I recall, AS affected men more than women. I also take indomethacin (now called indometacin in UK) as an anti-inflammatory. My dose is 75mg slow release twice a day. It works better than some of the other NSAIDs, but not as well as Celebrex did.

  13. If it isn't one thing after another, sweetie. How much can one family endure?


    I do hope that your mother and father are both feeling better soon and that your tube replacement goes well, too. Good luck to your daughter on her exams, while we are at it and continued strength to your husband.

  14. Well, since your bone biopsy was unexpected, at least you didn't have the anticipatory stress of waiting to have it. Not quite so bad waiting for the results (which I hope are good). Do let us know when you get the results.

  15. Sorry, I thought I answered this the other day. When my son was five, I bought water pistols as party favours and we had do it yourself pizzas for food. I let the boys decorate blank pizza rounds with their own concoctions of ingredients I left out for them, then I baked them. It was horrendously messy, but afterwards I filled their water pistols and sent them outside in the yard. They ran round and round the house shooting each other, laughing and squealing, for an hour while I picked up the mess and waited for the parents to come pick up the mess. Glad all went well.

  16. Hi, Marie


    You have described a problem which I am sure plagues many of us. There are a number of causes and/or contributing causes, so it is very much a process of elimination to find your own solutions. Perhaps you can find some useful advice in the ISN Bowel Dysfunction page. My husband and I both have a problem caused by different things: his is dairy, fibre, cabbage and similar vegetables, mine is caused by eggs. He doesn't chew well and ends up swallowing a lot of air with his food. I have found that my digestion works better if I have a serving of yogurt every day. For me, peppermint tea causes more upset. We keep a box of stick matches on each of our end tables. Lighting one seems to eliminate the odor (or at least distract the olfactory receptors). ;)

  17. Hi, Barbs. I am so glad you are finally getting a hot new tube to go with your jet set lifestyle (I have just been reading your blog). I hope the transition is relatively painless. Do keep us posted on how it works out.

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