• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Sign in to follow this  
Followers 0
ktm

Confused and this seems to be the right place

15 posts in this topic

First rheumatologist visit today and already starting me on infusions and methotrexate...I'm still not convinced.

Share this post


Link to post
Share on other sites

:( Yes, it's true, I'm a "self Pay" never in my life before have I felt stigmatized-but I do now.

I met today, Tuesday, with Rheumatologist for the 1st time.

My symptoms are strictly skin and at that, it's mild morphea tops of hands, inside elbows, around waistline, chest, neck. Biopsies and positive ANA no other negative blood tests, no other symptoms nothing not even stiff in the morning and I'm 56, over-weight and don't exercise. Dr wants me to start taking methatrexate weekly and start infusions of Solu Medral on Monday, Tuesday and Wednesday.

Isn't this kind of excessive? He spent 10 minutes with me-MAX!! I have not had an EKG or Pulmonary Function test yet.

 

Am I wrong to be concerned at the rush? I don't want to be "in denial" but really, I'm not convinced this much can be wrong with me. I felt bad for a month or too tired and depressed but never missed work, and it wasn't that bad.

 

What finally got me to a doctor was my abdomen had a large blistery area that wouldn't heal. Then I showed him the Morphea and the Dermatologist visits began...Oh, what a crazy whirl-wind.

 

The day before Thanksgiving, I woke up and I felt GOOD! Weird. Out of the blue, I felt good! But the visit I made today to the rheumatologist was already scheduled, so I went. There has been no spreading of the Morphea in about 3 months and skin is thinning out some with the use of steroid ointment. So, what's next? Do I take the drugs? I live in Georgia and it figures there's no listing for any specialist in Georgia on your "List of Specialist". I've read some posts from people who've been to Emory. But I am SELF PAY and I can't afford to hop around in what seems to be the search to prove I need all these drugs.

So in addition to being Self Pay, do you think I'm also in Self Denial?

Share this post


Link to post
Share on other sites

ktm, are you not convinced that you have Scleroderma or are you not convinced that you need to be on infusions at this time? Welcome to our forums. You will learn so much visiting our medical pages and asking questions to all its members. Things that help us individually or certain symptoms we experience. We try to give our thoughts and feelings on things that we go through doing this disease process. I hope you make many friends and over time give great input to our growing community of Sclerodians and their families and friends.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Ktm,

 

Welcome! There's a huge amount of useful info on the site, so look around. And a generous, supportive group of people. What kinds of problems have you been having that got you referred to the rheumatologist?

 

Take care,

 

warmheart

Share this post


Link to post
Share on other sites

Hey Darling,

Welcome! Please tell us a little more about yourself. What are your symptoms and what are the infusions? We aren't doctors, but we might be able to guide you to information that might help you learn more so you can work with your doctors. You mention that you have doubts, therefore, there must be a reason or two for those doubts. Make sure to discuss this with your doctors. You have the right to know why you are being prescribed these meds and how they will help you. Please keep talking to us and let us know how you are doing.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Ktm,

 

You always have the right to refuse a treatment that doesn't make sense to you or delay it until it does. You also have the right to ask as many questions as you need to. Two questions that occur to me are: what alternatives are available (you might want to look at our pages on morphea) and why the rush to a pretty intensive-sounding treatment plan.

 

Just a thought, you might want to see if anyone at Emory who is interested in scleroderma/morphea would see you on a pro bono or reduced cost basis. Sometimes talking to a facility's financial office is helpful in sorting out consults/treatment that would otherwise be unaffordable.

 

Best of luck to you,


Jeannie McClelland

(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

Share this post


Link to post
Share on other sites

Hello Kathy

 

Welcome to the forum! I found your second post titled "self pay" on the undiagnosed forum so I have moved it here.

 

If you have been diagnosed with morphea, a localised form of scleroderma, then internal organ function tests are not necessarily required because morphea does not effect the internal organs. Systemic sclerosis is the type of scleroderma that can effect the heart, lungs and kidneys.

 

We have a page about morphea that may be of interest to you. It says that methorexate and glucocorticoids, of which solu medrol is one, can be used to treat morphea.

 

The decision as to whether to have the treatment or not can only be decided by yourself and is best done in conjunction with your doctors. Please bear in mind that none of us here on the forum are medically trained so we can't give you a definitive answer.

 

I hope this helps and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Thank you very much for the reply...I am convinced I have Sclero--I was confused whether or not I needed the treatments, and after further research, I will go ahead with the treatments.

Share this post


Link to post
Share on other sites

Thank you for the welcome! My family doctor referred me to a dermatologist and the dermatologist did the biopsies and ANA and he referred me to the rheumatologist because he was one of the only doctors they work with who does the Methtorexate treatment, plus the dermatologist was concerned that I could have diffuse (systemic) sclero.

Share this post


Link to post
Share on other sites

Thank you for the kind welcome! I think my doubts and concerns were mainly because of the Rheumatologist's demeanor very rushed, explained NOTHING, saw me for 5 minutes, with most of that entering things in the computer on my chart then took me to the check-out desk and started telling them what all I was going to be doing. If it weren't for previous research on my own, I wouldn't have known what he was talking about! But I'm going to start the treatments and keep learning more about this from this wonderful site. Thanks to all of you!

Share this post


Link to post
Share on other sites

Hi, Thank you for the suggestion about Emory...I will look into that possible route to seeing someone there.

Share this post


Link to post
Share on other sites

Thank you, Amanda. There is so much to learn about all this. This site is already helping me sort through this maze of autoimmune diseases. I'll keep reading and maybe someday I'll be able to add something that might help the next newbie :-) Thanks to all.

Share this post


Link to post
Share on other sites

Hi Ktm,

 

Welcome to Sclero Forums! You have officially graduated from the Welcome forum (congratulations!) so this thread is being moved into the Main forum to continue the discussions.

 

Here's your Sclero Welcome Wagon flowers: :flowers:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

I know what you mean about feeling rushed. Doctors may move at the speed of light but I usually don't have a coherent thought before the door shuts behind him on the way out. I wouldn't worry too much about self-pay being the cause- I have insurance and feel exactly the same. :temper-tantrum:

 

Some of the trouble with this disease is the variable nature. Blood tests are an indicator but medicine as an "art form" seems very important too.

 

Anyway, I hope that you do find that your treatments really work for you.

 

Welcome- you sound like a together person and look forward to hearing about your experiences.

:D

Share this post


Link to post
Share on other sites

I just wanted to say welcome too Ktm! You've come to the right place for factual and good information! Ask away, there's always someone in the know here (albeit, here's where I say that it's not me in the know for a lot of it, but I am sure am learning tons!)


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0