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Post by kathygirl on Jan 24, 2010 23:56:41 GMT -5
Had another argon treatment on my stomach on Thursday. My stomach is worse than last time. Now I must go every 4 weeks to have this procedure done. It explains why my hemo was staring to fall again. I wouldnt mind getting it done if I could stay asleep during it but I always wake up part way thru. Oh well getting to be an old pro now. All of the nursing staff know me by name. Thankfully they are all very kind.
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Post by steve201 on Jan 25, 2010 0:25:32 GMT -5
man..sorry to hear that....take care and we'll be prayin for ya!!..
Steve
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Post by jeffn on Jan 25, 2010 17:28:00 GMT -5
Looking forward to that every four weeks can't be fun! Hope that stuff heals up soon.
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Post by Cubby on Jan 25, 2010 18:50:05 GMT -5
Do they say why it is worse? I have been gone over a month, so wondering how u r doing overall?
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Post by kathygirl on Jan 25, 2010 19:50:18 GMT -5
I am on the downward slid again. I have blood in my urine and need to find out if it is a bladder issue or kidneys. I have had a kidney ultasound done and it looked fine. My doctor wants me to have a catscan on my kidneys just to be 100% sure. I am having recurring bladder infections which could cause bleeding. Until I get this fiqured out I cant take cytoxan. It always works fast in my case. I take minocine when I am not taking other antibiotics for the bladder. As you can see things are a bit complicated now. As for the watermelon stomach he said there is nothing I can do to make it better or worse. As long as they can find a vein for the IV, I am ok with getting the procedure done. I have an appointment with Dr S in Ida Grove to see if I am a canidate for IV antibiotics. I am Canadian and my health insurance wont pay for any of it but it is a small price to pay if it kickstarts things . I heard from the doctor today my hemoglobin is 95 almost double what it was. Thats pretty good considering I am leaking like a sieve.LOL I really shouldnt complain there are so many in worse situations. I think about the people in Haiti and cant believe how fortunate I am.
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Post by steve201 on Jan 25, 2010 22:39:04 GMT -5
kathy...a thought came to me with what your talking about....but have you thought of Antibiotic's...pill form low dosage type.. ? Steve
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Post by kathygirl on Jan 25, 2010 23:41:47 GMT -5
When I am not taking other antibiotics for bladder infections I take minocin 100mgs twice daily. Its not doing alot to help me. So I thought if I could get a boost from IV antibiotics maybe it would help. Small scratches develop into deep sores with yellow pus. I am thinking that extra antibiotics would help with that. I dont think it can hurt to try. Iam still looking for a doctor to do it here but they are few and far between.
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Post by Cubby on Jan 26, 2010 19:51:06 GMT -5
This might not be an option for you, but the Photopheresis, along with the Minocin really helped me. Also, LAUREN who used to be on this board but now is on INSPIRE, did IVIG and cellcept and is in full remission. Wonder if either of these options would help you.
Also, I know others on Minocin who have had great success adding the CLINDAMYACIN as an IV.
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Post by kathygirl on Jan 26, 2010 22:37:52 GMT -5
Hi cubby, I have been asking my doctor for IVIG. They dont like to use it for scleroderma because there is a shortage of it and hasnt been proven effective in scleroderma. I did see another sclero specialist that said she would use IVIG on me if it looked like I was at deaths door and there were no other treatments. Personally I think that is stupid. Why wait for the disease to get that bad. She did say in the future they may try a clinical trial forIVIG. I am going to do some research on Photopheresis and see if there are doctors here that use it. Probably I can get it by going to alternative medicine doctors. I see my sclero doc in a couple of weeks and may ask to try cellcept again. I tried it before for 2 weeks and was horribly sick on it. I did find a doctor in canada that does IV antibiotics but theysoundlike they dont have alot of experience and charge 250.00 an hour.I dont mind paying the money if they know what they are doing. I think I will keep my appointment in the US unless I kind find someone with experience here that is taking new patients. The waiting list is 3 years. My sclero doc said she would prescribe oral clinamyacin. Maybe thats what I should be trying first. As you can tell I am trying to come up with a plan of action. I just have to find the right combo for me.
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Post by antonietta46 on Jan 27, 2010 10:40:50 GMT -5
Sorry you are having to go through all of this, hope things will get better for you soon.
Antonietta
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Post by Cubby on Feb 3, 2010 15:54:09 GMT -5
KATHYGIRL: I sure wish I could help you more but I don't know how. I wonder if your doctor would consider calling Dr. Wigley at Johns Hopkins in Baltimore, Md. He is the head of the Scleroderma section of the hospital. Sometimes other doctors will call another doctor.
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