Jump to content
Sclero Forums
Angelique

Newly diagnosed limited scleroderma

Recommended Posts

Hi Nancy,

 

I've included a link to our medical page on Medications for Scleroderma.

 

Speaking for myself, my main medications are an immunosuppressant like you (azathioprine) and prednisolone; the latter was very effective in the beginning, although not a drug we recommend for scleroderma (see our page Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma). However, it did have the desired effect of making me feel much better (in the beginning I was swinging off the chandeliers on it!) I'm not so ecstatic about it as I was in the beginning, having experienced most of the side effects including avascular necrosis, weight gain etc. and now I'm actually reducing the dose, with a view to discontinuing it completely.

 

With a disease such as scleroderma, it is very important to consult your scleroderma expert with regard to the medication you should be taking, as both this disease and different drugs affect people differently and a "one size, fits all" policy doesn't really apply in this case. 

 

Kind regards,

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi all,

     I'm scheduled for a full work up here in Baltimore at Johns Hopkins Scleroderma Center.  Has anyone had one of these?  They sent me six pages of paperwork to fill out for a Dec. consult.  My rheumatologist and I are wanting them to just give us a second opinion on how we are approaching my treatment,  I have four kinds of SS and also test positive for Mixed Connective Tissue Disorder.  I'd be interested in hearing about others' experiences with Hopkins.  Thanks.  Nancy HG

Share this post


Link to post
Share on other sites

Hello all,

 

I took the plunge and made an appointment with the Doctor who has subspecialty of Scleroderma which was listed here. I have to wait until February to see him. I decided that this is my body, I need to learn as much as possible about this disease. I really need to know we're heading in the right direction with all these meds.

 

The specialists I see, causes me to question my treatment. Pulmonologist I saw last month, she came from John Hopkins and has worked with scleroderma patients previously. She said to me, that she has seen Cellcept used on those with lung involvement. Not for joint and muscle issues. She told me to take advantage of having a Doctor in the system who has scleroderma as his subspecialty. This prompted me to make the appointment.

 

Saw the ophthalmologist, he told me exudate is from my diabetes. Although my retina scan was much better. Go figure? He was no help on what might help me get my contacts in daily since the tightness around my eyes has become more advanced.

 

I know many of you are suffering more than I am. I'm just wondering if any of you had rapid changes or has this been a slow progress of the disease?

I feel like so much is happening quickly in the past year of body changes. Raynauds, calcinosis, sclerodactyly, acid reflux, newly found telangiectasia. Along with the muscle and joint pain.

 

 

Share this post


Link to post
Share on other sites
On 7/4/2019 at 2:36 AM, Charwim said:

I too have Crest Syndrome, my feet have been swollen before but mildly.

 

This is July in Indiana; we have had super hot weather the past week and a half 90's with heat index 100. Yesterday and today my feet/ankles are huge; I've never seen them this big before, I was concerned until I started reading everyone else's post, I figure if it isn't down after 4th of July and the weekend I'll call the doctor.  I've been sick since I was 27, but only recently diagnosed with CREST, but it makes perfect sense to me know with all the crazy symptoms I've had I'm now almost 46, so when they finally gave a name to my issues I did find some relief in knowing name finally after all the crazy issues I've had.  I choke on liquids, I actually aspirated a French fry over a year ago, which threw me into pneumonia off and on for 2 months, that's when doctors started wondering if I didn't have more than fibromyalgia and osteoarthritis, sent me to a new RA doctor and as soon as I told her the weird symptoms I've had for 20 years, she instantly said I think you have CREST, she tested my blood SED rate high which it has always been since age of 27, same with my positive ANA, but then she went on to test my ANA pattern which was centromere. She then called said it's what we talked about, so I did feel some relief for name put to everything I've dealt with for so many years now, but then I had to research what CREST was because I'd never heard of it, once I read the symptoms I thought, oh my everything makes perfect sense now. 

 

I am a bit scared because I've been sick since the age of 27, so now that 20 years have passed and over the last 10 my body has declined a lot, so I do get a bit nervous of what's in store for me these next few years, I own a business and work 7 days a week, but I can no longer stand on my feet for more than a half hour, my fingers have turned crooked from the osteoarthritis, so grasping things hurts and I have oedema (dropsies), I'm in severe pain daily, especially in the morning when I first wake up, I've not slept in a bed for about 4-5 years because I can't or I won't be able to get up in the morning from the pain. 

 

I guess I'm here for moral support because I don't know anyone who has CREST, my family and close friends have never heard of it either.  So I'm lost when it comes to this syndrome.  I want to know if certain foods help, certain herbs anything natural, I need to change my habits to benefit my health, I have 2 grandbabies on the way, my first ones ever, I want to be around for many years to watch them grow up, so if anyone has advice to better my health, what helps, what to stay away from, I'd be so thankful.  Sorry to ramble I'm just so excited to know I'm not alone, that there are others dealing with this. 

 

Thank you all so much for sharing your stories.

Hello Charwim,  I am so sorry you are in a struggle with the pain and stiffness. 

 

I have been diagnosed with Limited Scleroderma which was found by accident.  I have osteoarthritis which came on practically overnight in both my knees and right hip.  I am stiff as rock when I wake up and can barely walk.  My sister in law was diagnosed with Lupus over 20 years ago.  The medications were making her feel worse and worse.  She threw everything away and started studying everything she could find on holistic approaches to healing.  She changed her diet completely to organic foods.  She said I should look at every packaged food. If there are more than 5 ingredients don't buy it.  She put herself into complete remission from Lupus 20 years ago. She has always told me small changes can make a big difference. If you give your body what it needs it will help heal it.  She uses fresh Flax seed oil in a Whey Protein shake with added turmeric powder for inflammation.  She also tries to eliminate all refined sugars, pasta and bread.  I have started the Flax seed oil with Whey Protein and mix it with some banana a bit of turmeric powder and anything else healthy that makes it taste better.  I found everything online at a health food site.  The Whey comes in different flavors.  I figure anything is worth a try but it takes time.  I love chocolate but I can only eat Milk chocolate and not the dark which causes terrible acid reflux.  But sugar is a no no with inflammatory conditions.   She also tries to eat very very little red meat. 

 

I love everything that is on the no list, but she says once I get used to it I will notice the difference.  She also does stretching exercises every morning and evening to keep her joints more limber and reduce pain.  I have been choking on liquid and food for years.  I am not sure if it is becoming an anxiety symptom. I was endoscoped in 2006 which was a long time ago and there was nothing in the esophagus.  I am going to have it checked again and checked for scarring from my acid reflux. It always seems I choke more when I am upset and worried.  You are not alone and ramble all you like. 

 

Hope you feel better.  Elaine

Share this post


Link to post
Share on other sites

Hi Elaine,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with limited scleroderma and send my best wishes to you. Whilst alternative therapies can have a place in the treatment of scleroderma, we do recommend that our members do consult their scleroderma expert before trying any different remedies, or discontinuing prescribed medication.

 

Certainly stress and anxiety are very bad for autoimmune conditions and can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...