[smiletatoo]

Hi everyone, this is my 1st time coming to this website. I didn't know where to turn. I love my mom...she's my mom, my best friend. I can only try to understand her pain and what she is going through. I want to be strong for her and I wish all the prayers in the world would help.

My mom told me today that the Dr's are giving her a year. She won't let us go to the Dr with her and if you knew my mom you would know she is the most brave and strong and caring and loving person you will ever know or meet. I just want to know what else I can do? If there are any other treatments (natural) that are out there for Lupus or schleraderma? She's taken some medication and also the prednisone and those did not work or help.

My mom is so young and she has 3 gorgeous grand daughters who need her. I need her...I wouldn't be able to live without my mom! I love my dad and my husband and daughter but that's my mom...my mom has been there for me and me for her our whole lives.

I just really had to get this off my chest. If anyone can think of anything that they use that helps them feel better I sure would like to know. I can pass it on to my mom. In most cases don't people usally get a 2nd opinion? Are there new drugs or stuff that can stop it or prolong systems or not have pain?

 

[Katharine]

Hello and welcome to the forum.

I'm so sorry to hear what brings you here and to hear how poorly your Mum is.

It is very difficult for anyone here to say what could help your Mum as everyone and everyone's disease is so different.

If your Mum hasn't had a second opinion it sounds very much like one is needed. Has she only been treated with prednisolone or have other things been tried too? There are a lot of treatment options out there and if your Mum hasn't tried them then it is definitely time to find a new rheumatologist - urgently.

Can your Mum get the GP to refer her elsewhere? Second opinions are always worthwhile having. There's a section here on the board where you can post to "find a lupus doctor" and get recommendations from members depending on the area you live.

sending lots of hugs to you, please keep us posted on what's happening,
:grouphug2:

Katharine

 

[LolaLola]

Hello, I am very sorry to hear your news. I fully agree a second opinion is vital on something as important as this.
I don't know of any natural things that would help but am sure having you must be the best help of all.
Keep strong,
x Lola

 

[mysharonna]

Hello,

I am so sorry to hear what brings you here. Having a sick parent is heartbreaking, especially when they are young. My mom has been seriously ill several times over the years and it is scary and painful to see.

There are many treatments out there aside from prednisone...if your moms doctor is not willing to try them, I'd say a new doctor is in order. If nothing else, a second opinion just to confirm what the original doctor has said.

I hope you find some answers.
Sharon

 

[elisabethm]

Hi has your mum had this news from her doctor or from the rhumy what age is your mom.It is the worst possible news to here i do hope she gets some kind of help And what a great daughter you are if you need to send emails or pms please feel free to With all the Best Wishes in The World To you And Your Family Elisabeth:there:

 

[Maia]

What a scary time for you and your family. Scleroderma can be quite serious, most likely that is the diagnosis which makes her current doctor believe she only has a year left. Doctors are wrong about that quite a lot though... I certainly hope she has much more time left than that.

There was some evidence regarding antibiotic use in scleroderma sufferers as doing some good - in some cases quite a lot of good. It's not mainstream medicine though, but if you get a second opinion and nothing else can be suggested for her than there's probably not much harm in looking into that as a possibility for treatment.

Best wishes for you and your mom. Let us know how things go...
(((hugs)))

 

[cispence98]

My heart goes out to you and I will keep you and your family in my prayers.

I also agree that a 2nd opinion is definately needed sometimes even a 3rd or 4th opinion, sometimes doctors do get things wrong or they are only familiar with certain things and don't think outside the box, I would also do some researching online and in the libraries soemtimes we need to bring things to our doctors attention because they don't take the time to explore other options, don't give up, there is always hope that something is being overlooked that fresh eyes can see, I pray that you will find a doctor to look into all options available in and outside the box so that your mom may have a chance to explore another treatment that may be more responsive to her condition.

Prayers and hugs for you and your family!!:hug:

 

[Raglet]

I am really sorry to here about your mum - I am assuming your mother has the systemic form of scleroderma which sadly can be fatal, and does not respond to many of the medications that help those of us with lupus.

I don't know much about scleroderma, but my thoughts are with you and your family.

raglet

 

[raggedyann1]

Hello,

I am assuming from your abbreviation that you live near Sacramento California. If you do then it isn't too far to San Francisco. The University of California Medical School Rheumatology Department has at least one doctor that specializes in Scleroderma. See if you can at least get your mom to get a second opinion. There are medications being used with some success in Scleroderma patients including Cytoxan and Cellcept. It is possible that your mother's doctor is not up to date on treatments. What is being used for Scleroderma now wasn't just a few years ago.

I am focusing on the Scleroderma since it has higher mortality rates than lupus does. Is your mother on oxygen? Has she mentioned lung problems at all? Even with lung involvement there are many treatments being used now and more that are in clinical trials.

Take care,
Karen

 

[lazylegs]

Hi,

It is very difficult to see a loved one suffering. Your mom is lucky to have you looking out for her best interest.

A second opinion is definitely a good idea with such a dire diagnosis. Raggedy Anne suggested San Francisco State University and that is a very good idea. They have many top notch physicians. My rheumatologist contacts Dr. Fye when he has hit a road block. He is on top of all of the latest research. You can get an appointment on your own but the wait may be longer. I recommend you have your mom's doctor contact UCSF. That is what my doctor does to get his patients seen sooner.

My thoughts will be with you and your family.

Take care,
Lazylegs