Eithne01,
The treatment of chronic myeloid leukemia (CML) has changed significantly since the late 1990s, with the development and subsequent approval by the Food and Drug Administration of imatinib (in 2001), the first of a class of medications called tyrosine kinase inhibitors, which target the specific abnormality that causes CML.
Before that time, patients were treated with other therapy, including interferon and bone marrow transplant, and had very poor outcomes.
My doctor told to come for additional test in two weeks. Now my WBC is 1.3 and absolute neutrophils count is 0.04. I was told to stay home on antibiotics. How long it may take for my counts to clime back to safe range. And of course, I'm off gleevec right now. Does it seem that dose of 400mlg is too high for me.
I have been diagnosed with CML since Novmber of 2007. I am still a little confused about some things. and i guess when my WBC's got back to 4.5 I was excited and thought I was all good- In the clear huh... Well in less than a month my WBC's dropped back down to 1.8 and they say that I am good as long as I don't go past 1.5. Ok fine. I don't go back for another month and I already feel like **** and have had pneumonia 2x in the past month.
Anyways I know the inspire scleroderma site peeps talk about the GI effects of scleroderma all the time. Scleroderma is kind of rare and not everybody knows tons about it. There's a kind of sclero that has no skin involvement called sine scleroderma. Just an fyi.
My 24 year cousin is my best friend and was just diagnosed with CML and her doctors are very optimistic, but she has so many qiestions she is scared to ask. They are going to put her on the "Miracle Pill" will she lose her hair? Will is hurt her chances of have children? As optimistic as the doctors are, is there any chance that this is a fatal condition?
We are scared should we be?
Please google scleroderma and inspire. There is a sight that focuses on scleroderma. They have a very helpful and supportive group of folks.
Raynauds is often the first symptom of scleroderma. I don't have the exact list of symptoms you are describing and I am still in the catagory of undifferentiated connective tissue disease. But the symptoms you are describing especially the raynauds and "sunburnt skin feeling" and some others sound possibly suspicious.
Symptoms of CREST
By Mayo Clinic staff
While some varieties of scleroderma occur rapidly, signs and symptoms of limited scleroderma usually develop gradually. They include:
Tight, hardened skin. In limited scleroderma, skin changes typically affect only the lower arms and legs, including fingers and toes, and sometimes the face and throat. Skin can look shiny from being pulled taut over underlying bone. It may become difficult to bend your fingers or to open your mouth.
I have localized scleroderma (morphea) and want to have rhinoplasty and a chin implant performed. Are there any risks associated with having localized scleroderma and having these procedures done? Where can I got to find out information on this?
I just found out I have swallowing issues today via an esophageal manometry test, and the doctor said this could be tied to thyroid issues.... BUT my thyroid seems to be under control already with synthroid. Just curious to hear your thoughts.
Is there a relationship between cancer and scleroderma? I am involved with a small scleroderma group and we have had about 11 deaths to cancer with scleroderma. My sister also had scleroderma and ended up with lung cancer. The doctor is talking about treatment if i get any closer to cancer.
I am not sure I am posting this in the correct place. I am not so good with the comp.
org/diseases-conditions/scleroderma/symptoms-causes/syc-20351952 Scleroderma is group of rare diseases that involve the hardening and tightening of the skin and connective tissues and can involve the esophagus.
I would recommend calling your doctor about the difficulty swallowing. Let us know how you are doing.
So within this year I have been having some things go on that are frustrating me. First it was tingling and soreness in my left arm. Went to my dr and he referred me to a chiropractor who says my neck is misaligned. I start getting adjustments until I couldn't afford it anymore, maybe 3 months. Then in June I start getting dry and blurry eyes off an on, which I assume is due to new glasses but it lasted way too long for that to be the issue.
I'm 18 and for a couple of years now my hands and feet, no matter what, are ice cold and normally pale blue in color. When I go outside my hands tense up, turn blue, and it hurts to move them and when they get warm again they turn a bright red. I researched this and found that is maybe something calls "Raynaud's phenomenom" which is a sort of syptom for scleroderma. My mother had scleroderma. Is raymaud's phenomenom what this problem is?
My right foot is always swollen on the top of my foot and 3 middle toes only. I have had this on and off for years and my GP doctor gave my a water pill to take. He thought I may have poor circulation in my leg. In the past, it would take care of the problem and the morning after rest, my foot would be fine until the next night. Exercise seems to aggravate the swelling. The past 2 months,nothing make a difference. It is not at all painful or uncomfortable.
Yes, nucleolar pattern is seen in scleroderma and in CREST Syndrome which is a type of systemic scleroderma. The other possibility is systemic sclerosis, again quite related to scleroderma. The ESR will be high and RA factor may be positive.
Do discuss this with your doctor. Take care!
I then had a pain in my left thumb joint all of a sudden, it then moved to my wrist and then all into my hand, a chronic ache and throb and cramping. It then started exactly the same in the other hand, the same pattern aswell and is chronic in both of them! I have been to doctors multiple times who don’t know what it is, arthritic tests are all normal and as are xrays. I have been referred to a rheumatologist but the next appointment isn’t for another 6 months so I don’t know what to do.
5120 homogenous. Aditional blood being sent to Oklahoma for scleroderma 12 panel and he told me it would take up to 3 months to get results. Since I have symptoms of both lupus and scleroderma he's waiting to make a dx. Has anyone else had this kind of testing? He started me on prednisone and plaquanel. Anyone else started on this combo off meds?
Doctor, I am a 25 year old female. I was diagnosed with scleroderma 3 years ago. I developed a ''scar'' on my abdomen (in the shape of a kiss interestingly enough, it's funny) a few months prior. I then developed one on my breast (covers about 1/3 and deformed it,) so I went to the doctor. After they finally stopped giving me fungus creams that didn't work (Lol!), they did a skin biopsy and discovered it was scleroderma, which they confirmed through bloodwork.
Having started out with your complaints, and having finally just been diagnosed with scleroderma, I think it is particularly important that your doctor order the ANA, SCL-70, and anticentromere B tests. The nailfold capillaroscopy is also very important. Please ask your doctor to place a special request to the lab to do the ANA by the IFA method. The newer methods such as Multiplex which most labs are using these days, usually give false negatives for scleroderma patients.
Thanks No family doc as she sees docs at the health center. However I am going to ask mine to take her on so she may be seen during vacations. No nail fold test done. Negative RA last year but had pain in joints, better now. Trying to get info on exact disease brother had. Amputations to several fingers and a "hardening" of arteries is what I was told, Scleroderma? Sorry about spelling, RAYNAUDS. I get it confused with Reynolds.
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