Home Forums General Discussion Hello, I am new here…

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  • #300051
    linderkay
    Participant

    My name is Linda, I go by the name LindaK. My sister, 5 years younger than me, has been diagnosed with Systemic Scleroderma. She is going into the Mayo Clinic on Monday for a week of testing, to see the extent of the organ involvement, and other tests specific to Scleroderma. She also has Raynauds. We have just found out today that upon her return, she will have a Dr. willing to start her on AP therapy. I have gotten all of my information to obtain this treatment from this board and the wonderful people here. It is about time I joined. My sister and I are grateful. Happy. Anxious to be one of the success stories I read on here every day. I am so happy to be here. Big Sister, LindaK.

    #310970
    DianeWI
    Participant

    Hi LindaK,

    Welcome!  What a wonderful big sister you are!  I have five sisters and none of them support me.  They do not understand auto-immune diseases and don't want to.

    What state is your sister from?  I have been to two AP docs.  Both are wonderful men.

    Let us know if there is anything that we can help you with. 

    My daughter went to Mayo for her colon problem.  They love to pass people around there. 

    Hugs,

    Diane

    #310971
    linderkay
    Participant

    Hi Diane,

    Thanks for the nice welcome! I am sorry your sisters don't support you, it is at this time you need all the support you can get.

    We are both from Florida, she is from Naples on the West coast and I am from Ft. Lauderdale, on the East coast. It is only 90 miles from coast to coast here so the drive is fairly easy. I will be taking care of her pets and house while she is in the Mayo.

    I see you are from Wisconsin. We grew up there as children in Fon du Lac. Are you near any of the Great Lakes in Cadott?

    We were really hoping the Mayo would be a bit more aggressive in the TX of Sclero but have since found out they are pretty old school, such a disappointment. Thank God we have the AP Dr. waiting when she gets home.

    It is and always has been my job to take care of my little sister, all my life. I love her and her and am not willing to watch as this disease gets worse by the minute.

    Take care Diane,

    LindaK Big Sister

    #310972
    steph-sclero
    Participant

    Hi LindaK,

    Welcome to the board and the sclero. group. There are some wonderful people here to give you support, great info. and positive feedback. Tell your sister everything is going to be okay. AP does work and it the true hope in this sea of info. and other med.'s. Your little sis is very lucky to have you on her team, count us in too.

    Take Care and Peace to you both,

    Steph

    #310973
    linderkay
    Participant

    Steph, thank you for the warm welcome! I see that you do the mino and the clindy IV, which is what we are looking at starting in 2 weeks. My sister has been on the mino for 2 weeks and already sees improvement!!! Amazing! I have a question for you. On the clindomycin I see you had the weekly treatments, then you went for monthly? Is that right? Well, how did your schedule go for the IV, did you go for 5 days in a row first and then go to a monthly dose? How often do you do the monthly dose and what is the dosage? I am just trying to figure out what kind of schedule we are (possibly) looking at here. Thank you, LindaK

    #310974
    steph-sclero
    Participant

    Hi LindaK,

    It's actually one week every month for five days at 1800 mg. a day broken up into 900 mg. every twelve hours. Hope this helps. I have seen more improvement with the I.V.'s then the mino. alone and very liitle side effects. I will do the I.V.'s for one year and then re-evaluate at that time as to whether I want/need to continue them.

    Cheers,

    Steph

    #310975
    linderkay
    Participant

    Thanks Steph. I am happy to hear you have seen much more improvement with the IV's. That is such good news to hear. We are really anxious to start, wish it were today! Lindak

    #310976
    linda
    Participant

    Welcome the the board, LindaK, from another Linda K. I'm lazy, tho, and just go by linda. I wish the best for you and your sister. Keep us informed,

    linda

    #310977
    Goodwife
    Participant

    Hi LindaK,

    My hubby was dx with Scleroderma (SD) July/Aug 2006 – started AP end Nov 2006 – For the first six months did mino 200 mg/day, then at the 6 month mark (our own decision) started the clindy IVs.  10 treatments (2/day) and since then 2 per month and MWF mino 200mg/day.  We see a naturopathic doc and integrative med. doc for the IVs.  Also our GP does r outine bloodwork, etc. and prescrips for mino.  my hubby's improvements have been wonderful.  I have started writing his story and hope to finish and post it soon for everyone.  We were devastated at the time of dx and now feel that we have our life back and things are great.  So keep the faith and be patient – it is not fast, but the improvements will come.  Good Luck to your sister!

    #310978
    Cheryl F
    Keymaster

    Lauren (Goodwife),

    I remember your dark days of worry, I know I was only a few steps ahead of you, feels much better on this side looking back, doesn't it?

    Cheryl

    #310969
    linderkay
    Participant

    Hello Goodwife, Thank you. We were simply broken hearted when we got the diagnosis but have since been through a few Dr.s that absolutely would not do the AP but have found one  that is willing to work with us. My sister was put on the Mino 2 weeks ago and is already noticing the improvement. She starts the IV Clindy in 2 weeks, as she is going into the Mayo Monday for a week. I love reading that your hubby is doing so well on the AP, reading the posts of AP working are so encouraging, you can't imagine. Or, I should say, you can imagine. This gives me so much hope. I am grateful. LindaK. Big Sister.

    #310979
    linderkay
    Participant

    Steph, is there a way that I could find out who your Dr. is so that I could have my sisters Dr. could do a phone consult with him? You could PM me if you don't want to put it on the board. The Dr. we have is new to this but very willing to save my sisters life. I see that your Dr. did a very aggressive round of clindy IV, I would be interested in her Dr. conferring with yours, to give her the maximum jump start she needs. Thanks Steph, Lindak.

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