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About janey

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    New Mexico
  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!
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