New - Daughter has been diagnosed with Scleroderma
Posted 19 June 2009 - 09:51 PM
I am new at this and I am writing on behalf of my daughter who is 33 years old.
In February 2009 she was diagnosed with Scleroderma. It started in her feet and legs with swelling and the skin started to harden. It has since spread to her thighs, chest, hands, arms and face. She also has Raynaud's in her hands and toes.
She has had lung function tests, as she was short of breath and still is, heart tests, lung scans.
She was prescribed prednisone which made the swelling worse. Then they had her on methotrexate and the results they expected were not apparent, so they changed her to mofetil microphenolate, which she is currently taking. She also has had 4 infusions of Octagam (immunoglobulin), but there does not appear to be much change from that each time.
She has been diagnosed with a watermelon stomach and has had 2 endoscopies to cauterise her stomach to stop the bleeding, as she is losing blood all the time. She has also been given 3 blood transfusions so far, and each time still keeps losing blood.
Like everyone she has the fatigue, tightness in her limbs, showering is an ordeal for her and leaves her absolutely exhausted.
She has this dreadful itching and it's worse during the night. Does anyone have any suggestions as to what she could use to calm the itching. She has found so far that hemorrhoid cream is the only thing that gives very limited relief.
We have a doctor appointment on Monday and they are considering putting her on cytoxan. I have read the side effects and we need to consider these prior to commencement. Has anyone had success with this medication?
I have also heard about the stem cell trials and need to ask about that.
Would appreciate any comments from anyone.
Posted 20 June 2009 - 12:48 AM
There are many creams that may help with the itching, though I haven't found one that is exceptional. There are several medications that can help with the itching. Some make a person very sleepy. Depending on how severe and prolonged this itch is, the doctor will prescribe what he thinks might work for your daughter while you are visiting him on Monday. The cream prescribed to me is called Lac Hydrin Cream. There is a generic for it also. Sometimes the itch can be totally uncontrollable and non stop for days and days.
Take a look around the forum and familiarize yourself with the medical areas.
I am off to get ready for a wedding that my daughter in law and two grand children are in this morning. Welcome aboard, I am sure you will have many responses to your questions by the time I check back in later tonight.
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)
Posted 20 June 2009 - 02:01 AM
I am on Prednisone 5mg, Methotrexate and Plaquenil...but everyone is different. There was a time when I always had sores on my arms and legs from scratching. Now I very rarely have itching. My doctor did give me a prescription cortisone cream and that did help a bit but it seemed to settle down after I started on Plaquenil.
So I just wanted to say that there is hope that things will improve, I just hope your doctors can find something that will help.
Posted 20 June 2009 - 02:20 AM
I'd like to welcome you to the Forum too and send you the first of many hugs. I'm really very sorry your daughter is having such a tough time.
The itching sounds terrible and really hard to put up with. We have a page on it here that might be useful to read. I'm not a doctor and I'm not saying this is so in your daughter's case, but since itching can be caused by by other things than skin tightening, I think this might something her doctor may want to take a closer look at.
My itching is caused mostly by xerosis (dry skin) associated with sicca syndrome (SjÃ¶gren's). The page for that has some great tips. As long as I use little or no soap when I bathe, watch the water temperature, and moisturise as soon as I get out of the shower, it's not too bad. Another thing that has helped me is to stop using fabric softener in any form (sheets or liquid). When I first heard that tip I thought no way! Y'know, it really does help.
I've been very fortunate to have been stable on Mycophenolate Mofetil (CellCept) and Plaquenil (Hydroxychloroquine sulfate), so I have no personal experience with the other scleroderma treatments, but I do know there are others in addition to those you mentioned and new ones coming along. If there is ever a good time to have scleroderma , this might just be it.
So, again,welcome. Keep posting and let us know how things go on Monday. And please, take care of yourself as well as your daughter.
Warm hugs and the very best wishes,
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 20 June 2009 - 04:13 AM
With regard to cytoxan, I was on this for the first 5 months once I was diagnosed. I then had to quit taking it as I developed cystitis of the bladder. I took the oral method. I had the side effects of additional fatigue, nausea, thinned hair. I wasn't on it long enough to see if it was working. I do know that I won't ever be able to be on it again due to the bladder and kidney issues. With this drug she has to drink a ton of water each and every day. I didn't drink enough and that may be why I developed the cystitis.
I take Cellcept which has really softened my skin and it's not as tight. I have terrible muscle pain and I was just started on Methotrexate 4 weeks ago. This is like the cytoxan in that it's another drug in the chemo family. I'm dealing with additional fatigue and some nausea even though I'm on the folic acid.
The key to all of this is to make sure you are dealing with doctors who are very versed in the field of Scleroderma or it's a total waste of time. It's a disease that is so different for each patient so you need to deal with health professionals that know the disease. I just had a stress test done and the cardiologist that read the test and did the report diagnosed differently than my own cardiologist that knows about scleroderma.
You have done the right thing in getting on a board for information, support and compassion. Your daughter may want to come on some time too as it seems that the only people that really understand what we go through and what it's all about is other people who have the disease.
Good luck to you and your daughter. I hope she starts to feel better and gets her blood issues worked out too.
Posted 20 June 2009 - 05:55 AM
I am so glad you have come to the forum, but I am so sorry that your daughter is so sick. She is lucky to have you. I too have the watermelon stomach. I have been fortunate and only had two major GI bleeds and for the most part I am stable.
I am sending good vibes to your daughter.
Posted 20 June 2009 - 06:33 AM
I don't have any advice but wanted to welcome you to the group. I joined because my son was diagnosed with sine Sclero/UCTD back in Nov '06. He was 18 years old at the time and had esophageal dismotility, loss of voice, lung restriction, major fatigue, wt loss, and positive blood work. He started Plaquenil 6/07 and has been doing well since.
Take care, Everyone.
Posted 20 June 2009 - 10:45 AM
Your daughter is so young. I wish her - and you, well.
Posted 20 June 2009 - 11:21 PM
Thank you all for your responses, I have been trolling over all the information you sent me today and it has been most helpful.
It has given my daughter a "lift" in spirit, for which I thank you all again. She can now see there are others out there fighting this dreadful disease, and she is not alone and I have told her we will WIN !!!!! and so we shall, no matter how long it takes !!!!
Our thoughts are also with all of you, with your own personal situations, and sincerely hope they improve for each and everyone of you.
Great to talk to everyone with the same problems, and who have the understanding of the enormity of scleroderma. I will certainly be communicating again either myself or my daughter.
Mum (Sandra) and Sonia.
Posted 21 June 2009 - 01:15 AM
Everyone with sclero should have a mother like you, proactive yet calm. The beginning of the disease can be the worst not only because you're moving from the realm of healthy to chronic illness but because the symptoms start full on, particularly the itching. I had the itching 2 months before diagnosis so I was totally lost as to what to do and it drove me to despair. Thankfully it is now, 2 years in, a minor consideration so it can be a phase that passes.
I have a friend who has sclero with lupus overlap and she actually wears tops inside out to avoid the seams. I also remember the dread of having to dress if going out, I spent as much time as possible in nothing more than soft, seamless bed clothing. The itching phase can pass so don't despair and whatever works for you use it however bizarre. At one point I used strong menthol based creams for the itch figuring a slight burning sensation was better than the itch.
I look forward to hearing more from you both.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)