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Everything posted by janey

  1. Christy, So sorry to hear that your daughter is experiencing health problems. It sounds like you are taking the right steps for a diagnosis. There are a lot of strange illnesses out there that are hard to diagnose and the experts like the doctors at the Mayo Clinic are equipped with the knowledge, experience, and equipment to increase the chances of getting a diagnosis. Jo has provided some great information, so all I can add is to take as much information as you possibly can so that the doctors can be well informed. Ask your daughter to go back at least a year and identify anything that was out of the ordinary. Some diseases do take months and even years to manifest, so any and all information will be helpful to the doctor. Please let us know how your daughter is doing and if any diagnosis is reached. All sharing of information is helpful to us all. Big Hugs to you and your daughter, Janey
  2. Hey Speedo, Sorry for the late reply, but just saw your initial post. I was put on mycophenolate (cellcept) 9 years ago for pulmonary fibrosis and it seems to have stopped it in its tracks. My fibrosis started in the lower lobes and has not progressed any further. I also take omeprazole twice a day and it doesn't seem to be impairing it, but like you I do not take them together. I take one omeprazole when I first get up, then 1 gram of cellcept an hour or two later right before I eat breakfast. I take the second omeprazole around 6 pm, an hour before dinner. Then I take another gram of cellcept around 8 - 9 pm. Both medications seem to be doing their job, so that method is working for me. Hope you find a regimen that works for you. Hugs, Janey
  3. I tend to always be cold, but when I cover up too much, I get too hot; therefore, it's a matter of finding that balance. :) Something that my husband and I find very weird is that I get really cold right after I eat. It's like my body can't do 2 things at once, so while it's trying to digest my food, it pulls energy from the rest of my body. Even in the middle of summer I keep a blanket handy so I can cover up after eating. Going out in the sun to warm up only last a little while, because then I get too hot. So YES, many of us can relate to the temperature swings. :) Hugs, Janey
  4. Welcome! Sounds like you have good doctors that have really jumped on trying to get you diagnosed. Hopefully you will get some definitive answers when you go to UPMC. As you probably already know, scleroderma affects everyone differently. However, as the others have said, fatigue is a common issue. Fortunately, my extreme fatigue only lasted a couple of years, then one day it just magically lifted. I get it for very short periods of time now, but usually it's during a flare-up. During my fatigue periods, I don't fight it. When the afternoon nap calls, I answer it. If a nap comes in mid-morning, I let it happen. I personally found that the short cat naps helped me to make it through the day. Without them, I am constantly exhausted and do absolutely nothing. Eating small snacks during the day help to provide a little more energy, so don't forget to snack of healthy snacks. Hugs, Janey
  5. There are several possible causes of pitted edema. I would highly recommend that you see your primary doctor to try to get to the root cause of your edema and to provide some relief. When I had it a couple of months ago my doctor prescribed diuretics that gave me quick and lasting relief. Hugs, Janey
  6. Oh my - tonight was the first time I've been here in a couple of years and this is what I see first. Oh Shelley, I just want to give you a huge hug right now and not let go! This is truly heartbreaking and my thoughts are with you Darlin. I'll be calling you within the next few days. Lots and lots of hugs, Janey
  7. Thanks Birdman's wife for your kind donation! Many of us here at ISN had the privilege of knowing you virtually and remember you fondly. Our best wishes moving forward.
  8. Lynn, I'm so sorry to hear that you and the husband are splitting up. Hopefully you will get the comfort and support you need from your family. I know the next few weeks are going to be quite hard on you, so please be sure to make time to rest and take care of yourself. When you have to stop - then stop! A warm bath, cup of tea with some music, anything to catch your breath and refocus. We'll be thinking of you.
  9. Amberjolie, I'm glad to read that your jaw problem has resolved itself. I had the some problem for a first weeks during the onset of my diseases. After being diagnosed with scleroderma, a blood test showed my CK (also noted CPK) as being high. The CK indicates the amount of skeletal muscle enzymes in the bloodstream. The higher the muscle inflammation, the higher the amount of muscle enzymes. A high CK is a possible indication of polymyositis (PM), another connective tissue disease (like scleroderma). Polymyositis can weaken the skeletal muscles primarily between the neck and knees. An EMG or electromyography is a test used to evaluate the electrical activity of the skeletal muscles which can be affected by PM. Since your current rheumatology even tested your CK it appears you've found a good doctor. It's not a common blood test, but PM is something that can overlap with scleroderma. Thanks for keeping us up on what's going on. We all here to help and support you as much as we can. Take care of yourself.
  10. Jo, Great article! I have several vasculitis issues, such as Raynaud's and PH, and I do notice them acting up when I get stressed. It can be stress from various sources, such as not being able to get warm and just trying to take on too much and getting frustrated that things are as easy as they used to be. When the stress occurs, I do feel it physical, so I have to take a break and chill out. That does help. Thanks for posting this.
  11. Margaret, Like Shelley I had never heard of IVIg in the abdomen, so I did a little research. Apparently, it's called Subcutaneous immunoglobulin (SubQ) and it's administered as you said once a week in the abdomen. Apparently the immunoglobulin (injected solution) is the same as that used for IVIg, but administered differently. The information I found did mention that the side effects were milder and that the patient doesn't get the swings that can occur with IVIg. I usually know it's time for my infusion because the week before, I'm pretty exhausted. I'm going to have to ask about this on my next infusion. It looks interesting. This definitely looks like the best method for Garath. The hour once a week will be much easier than the 6 hours, 3 to 5 consecutive days every few weeks. Please let us know how Garath handles it and if it works for him. I'm sorry that his condition is such that it requires this treatment at all; however, speaking from experience - it sure has improved my quality of life!!!! Yes, it's expensive! Thank goodness for insurance!
  12. Susie, sorry I'm just now reading this! WOW! You've had some excitement in the past few weeks! I'm so glad that the surgery went well and that your quality of life has improved since. Did you feel off balance once your tilt was gone? :) Hope things continue to improve! Lots of hugs Darlin!
  13. Cayla, I am so sorry that your mum passed away. My thoughts are with you and your sisters.
  14. Thanks Shelley! Like you - I'm not bothered by hot and spicy either. Thanks goodness!!!! My heartburn is primary caused by citrus like orange and pineapple. Definitely can't drink the juice! A pretty cool thing to know about honey isn't it? It works every time. Thanks for the nice comments!
  15. I know that with scleroderma you may have a problem with eating chile peppers, but for some reason, they don't really bother me. I am more affected by citrus fruits and acidic foods - oranges, grapefruit, fresh tomatoes, kiwi and the like. It's actually a good thing that I can eat chile because in New Mexico, chile is HUGE! One of New Mexico's biggest crops is the New Mexico chile pepper. September is a huge month for chile because that's when the crop is peaking so you can find chiles and chile roasters everywhere. So to celebrated this wonderful ingredient, I ran a New Mexico Chile Series. The series explains the question "Red or Green?" and provide several recipes for red or green or both. Check it out and ENJOY!
  16. Cayla, So sorry to hear that your mother has been diagnosed with severe PH. Hopefully she is under the care of a scleroderma specialist or a pulmonary doctor that is quite familiar with PH due to scleroderma. As Jo pointed out, there are many new treatments today that have been found successful. Please visit the link that Jo provided. I have PH associated with scleroderma and am taking Bosentan (Tracleer). It has helped me tremendously. I was reduced to half dosage a couple of years ago and my PH is stable and is actually greatly reduced. Please let us know how your mother is doing and if you have additional questions.
  17. Unfortunately, the headache is pretty bad most of the time and I have to take prescription painkillers. However, the last one was handled fine with Tylenol which was unusual but I'll take it! No, I didn't have to have a port put in, however, it was discussed at one point. They hired a nurse who was incapable of finding a vein. The nurse I've had for the past 2 years is awesome. It's usually one poke and that's it. We do try to leave it in all 3 days. If Gareth has to go 5 days in the beginning, I doubt they'll leave it in that long. I've never heard of "weekly" infusions. Is that one day a week? I started off for one week (5 days) a month, but as I said, that was 6.5 years ago. They may have changed the protocol. My infusions are now 3 day consecutive days, about 5 to 6 hours a day. I take my lunch and computer so I can work or watch a movie. Glad to be able to help!
  18. Margaret, As Shelley mentioned, I have been on IVIg infusions for years - 7.5 years to be exact. I started at every 4 weeks and an now quarterly or every 12 weeks. We've tried stopping it altogether but when we did my symptoms and bloodwork went haywire again. The ONLY side effect I have is a severe headache 24 hours after the infusions end and it last 24 hours. I know it's going to happen so I plan for it and usually just end up staying in bed. I know it sounds weird, but I do love my infusions because they give me such a boast in energy and a huge reduction in symptoms. The infusion process is boring, but now my clinic has WiFi, so I'm not bored anymore. :) I'm sorry that Gareth may have to deal with this. I'm not sure how he will react to the long hours of sitting. It is a blood product, but all of the safety requirements for it give me piece of mind. I hope all of this helps. I'll be more than happy to talk to you more about it. Just send me an email to my sclero.org address.
  19. Calcium Supplementation Without a Proper Balance of Magnesium Can Increase Risk of Heart Attack, Osteoporosis and Kidney Stones. The effectiveness and benefits of calcium with respect to bone health and the prevention of osteoporosis are enormously impaired in the absence of adequate levels of magnesium in the body. NewsGnom.es. 09/14/11. (Also see: Supplement Guide for Systemic Scleroderma) These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.
  20. Congratulations to Jeannie for taking on the role of ISN News Director! You are going to do a FANTASTIC job, because that's the way you do things! Congratulations to Jo for taking on the role of ISN Forum Manager! Do you always jump into things head first? :) You're like a sponge and because of that - we all know that you will do an AWESOME job! Congratulations to Amanda for become the face of ISN or more appropriately titled the "ISN video presenter". After seeing your video on cardiac involvement, this is a PERFECT position for you. My sincere thanks to ALL of you for easing my pain of having to step back from my duties at ISN (which I loved doing!) by jumping in there and - so enthusiastically - taking on new tasks and roles. My hats got off to all of you! You are a SPECIAL and UNBELIEVABLE group of people! Of course we all do what we do for ISN because of our INCREDIBLE leader - Shelley! I've now run out of words to describe all of you! Thanks, thanks, and more thanks!!!!
  21. I'm a little late on the toast but consider my glass raised!!!! It's wonderful working with you and you have become an invaluable member o the ISN team!!!!! Our members are very lucky to have you here to support them through their day to day issues with scleroderma. Great job Jo!
  22. Congratulations Jeannie! That's awesome!!!!! :emoticons-line-dance:
  23. Georgie, I get blood drawn on a monthly basis, but like Jo and Amanda, I've never had a burning sensation. My veins are very sensitive, especially to the changing of the vials, but no burning. I do however, always insist on a butterfly. They know me now so I don't even have to ask, but with the butterfly I barely feel the poke and I don't feel the changing of the vials at all. So you might try asking for a butterfly next time. If you still get that burning sensation, then mention it to your doctor because that's not normal. I'll ditto Jo and Amanda on the allergic reaction thing.
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