Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Rheumatologist Update


  • Please log in to reply
6 replies to this topic

#1 Honey

Honey

    Senior Bronze Member

  • Members
  • PipPipPip
  • 55 posts

Posted 21 February 2009 - 05:30 PM

Hello to all reading this. I have returned from my second visit with my rheumatologist, and after blood testing that revealed normal levels, xrays that indicated joint contractures, chest xray that indicated okay lung function, and echo that indicated fluctuating pressures in the valves, I am going for CT scan and talk with cardiologist, a mammogram, and other blood testings.

My "rheumy" has increased my prednisone mg from 5 to 10 at my request, since the inflammation and joint pain is slightly relieved (but oh, man!, I can tell when I am a little bit late in taking it). She has prescribed methotrexate and folic acid and well as neutronin for the nerve pain and raynaud's my feet are going through.

I am 58 and when I was in my early 30's, I developed Raynaud's. I haven't had a spell with it for years, until the scleroderma manifested. I had carpal tunnel release surgery last summer, and some dental work due to what my dentist thought was either arthritis of the jaw or TMJ. Little did I know that these were all the workings of my scleroderma. I couldn't understand why I would have TMJ or carpal tunnel syndrome, but it makes perfect sense now.

I am so new at taking medicine. The prednisone has been okay thusfar. It has only been 7 weeks. I am concerned about new medicines, but as long as I am aware of any effects or changes, I am hope all will be well.

I am happy that we can share our physical trials together and perhaps be of some encouragement to each other. May we all be restored!

Regards,
Honey

#2 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 22 February 2009 - 03:57 AM

Hi Honey,

It sounds like you are on the right track with your testing and having a doctor who will listen and get you the tests you need.

Please let us know about your visit with the cardiologist. Hope all goes well.

Hugs,

Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 22 February 2009 - 06:02 AM

Honey,

"May we all be restored"... then fought each other to be head of the queue. :)

It's funny looking back at symptoms etc and realising it was sclero all along, finally 1+1 makes 2!

Please let us know what the cardiologist says and yes it's great to be able to share our experiences and find we're not on our own it this, many have gone before us and many will come after us...of course we're the best bunch.

Take care.

Amanda
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)

#4 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 22 February 2009 - 07:48 AM

Ah, the old 'medication clock' - it's amazing how one's body will tell us it has passed the time to take meds. I'm so forgetful that I was getting urgent messages from the body all too often. I ended up making up 2 weeks of medications at a go - using those compartmented pill boxes. My daughter tells me there even ones with audible timers to remind us. Managing all the new meds was a real problem for me at first.

I hope all goes well with the cardiologist and other testing. Let us know, won't you?

Warm hugs,
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

#5 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 22 February 2009 - 01:46 PM

Thank you for keeping us in the loop! I hope all goes well and the methotrexate (MTX) helps with the pain.

I want to share something with you. 16 years ago, pre-awareness of the benefits of taking folic acid with methotrexate:
A young rheumatologist I was then seeing did NOT prescribe the folic acid and I was not a happy camper when I DID find out that it would help with the nausea.

To be ill is one thing, but to know the nausea could have been prevented :(
Fortunately, the last 8 years of MTX use was eased by the folic acid.

Thank you for letting us know how everything went.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#6 razz

razz

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 24 February 2009 - 08:43 AM

Honey,

It's amazing how we start out thinking our symptoms are the cause of one thing and then over time find out it is something entirely different than we imagined. I initially thought my first symptoms were arthritic which led me to make an appointment with a rheumatologist. That was ten years ago when I was diagnosed with systemic scleroderma. Thank goodness I didn't get the go around back then. Now I see a good doctor and take my med's like clockwork. (It also took me a while to get used to taking medications in the beginning.)

You're right on track with discussing your treatment and concerns with your doctor. I hope the medication works and you are feeling well real soon!

Hugs,
Razz
Live well, Laugh often, Love much

#7 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 24 February 2009 - 01:03 PM

It looks like you have a great doctor who is managing and watching your sclero really well. I am possibly going to be taking methotrexate too and I never knew about the folic acid until this post so I will be sure to ask my doctor about it if I start taking it. I have also seen many posts that seem to lean to the injection of methotrexate being easier than the oral. If I have a choice I'll go with the injections so as not to have to deal with something if I don't have to.

I wish you good luck and keep us updated on how you're doing. This site has been so helpful for me since the beginning of my diagnosis. It's a great place to vent and to learn so much.

Warm hugs,

Peggy