Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Starting IVIG Again

  • Please log in to reply
7 replies to this topic

#1 Peggy


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 633 posts
  • Location:Minnesota

Posted 29 October 2008 - 01:56 PM

I had my quarterly appointment and the news wasn't good. My doctor (who's leaving for another hospital and I start with a new one in January) said my lung involvement is worse. She wanted to start me on Methotrexate but decided to wait and let my new doctor decide what he thinks. She also decided she wanted me to go back on IVIG if my insurance would OK it. The last time they turned it down and I appealed and then won. I did 3 months of treatments in April, May and June. It wasn't until about July that I saw how much it had helped me. So next week I go in the hospital for 3 days for the IVIG treatments. They are long days and I'm not looking forward to it but you do what you have to do. My muscle pain is so bad that I've had to increase the doseage on my pain patch and was in tears today so if this helps I'm all for it. I'm really concerned about the lungs getting worse and I'm scheduled for tests in January including a CT scan. I'm also not looking forward to the methotrexate as I know this sounds vain but I'm just getting my hair back from the cyclophosphamide treatments. I just thought I'd update and I thank everyone on this board for always being there and the wealth of information that I'm always learning. Thanks and

Warm hugs,


#2 Nina


    Silver Member

  • Members
  • PipPipPipPip
  • 125 posts
  • Location:Claymnont, DE

Posted 29 October 2008 - 02:27 PM

Peggy, I'm so sorry that you are dealing with such unwanted news. You always sound so positive and supportive to others, I just wanted to let you know that you are in my thoughts ~
Much love,
Nina (DE)

#3 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 29 October 2008 - 03:56 PM

I am so sorry that you are suffering so with pain. I hope you seeing faster relief with your next IVIg treatment.

I'm very surprised that your doctor wants to put you on Methotrexate if you have lung problems. When I developed lung problems, my pulmonologist pulled me off it immediately. I'm no doctor, but one of the warnings for MTX is that is can cause lung problems. Here's some information from the ACR on methotrexate. Please talk to your new rhematologist about this.

Good luck with your next IVIg treatment. Take lots to read and some good music. My next treatment comes up on 2 weeks. I'm already gathering my "things to do" while there.

Very soft hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 canon


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 312 posts

Posted 29 October 2008 - 04:01 PM

Dear Peggy,

You are so wonderful. So sorry to hear of everthing that is happening to you. Will certainly keep you in my thoughts and hope the treatments work immediately for you too. I have been taking Methotrexate injections for about 8 years (give or take) and have not been bothered by any adverse effects from it so far. I believe it has kept the disease progression at bay in some ways. Don't think it covers all the areas needed though. It is quite possible as the disease progresses a medication change may be needed or added to. Left you a message on my post about the muscle pain. Take care Peggy.

With gentle thoughts.

A happy heart is good medicine.

#5 Sam


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 639 posts
  • Location:Delta, Ohio

Posted 30 October 2008 - 03:20 AM

Peggy, I'm glad that your going to try going back on the IVIG. You mentioned that it had helped before. Good luck and I'm sorry to hear that you got some bad news. Take care, Sam

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 30 October 2008 - 08:13 AM

Hello Peggy

I am sorry you are having such problems, pain stinks :angry: . In addition to which you are going to have a new doctor, I hope it turns out to be a welcome change for you :) .

I hope your time in hospital is as pleasant as it can be, what's the food like? Last time in hospital my husband and sister brought me food in. As far as the hospital food went, I was actually able to invert the dish with the "pudding" in it and it defied gravity staying in place. :huh:

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)

#7 ozzy69


    Silver Member

  • Members
  • PipPipPipPip
  • 169 posts
  • Location:Taylorsville, KY

Posted 31 October 2008 - 12:29 PM


I am really sorry to hear you are having problems with your lungs. Please try not to worry, I know your new doctor will be able to help. I know it is easier said then done. I worry all the time about how my scelro will progress. I hope you get some relief from your muscle pain. I just bought a heated blanket and I plan on sitting on the couch all weekend watching movies. Please keep us updated.
Thanks so much,
Nina Lynn

#8 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,895 posts

Posted 09 November 2008 - 04:10 AM

Hey Peggy,

I'm so sorry to hear about these problems you are having. :( I'm a little late in answering this as I've been on holiday, but I wanted you to know I'm thinking about you.

Have you heard anything about getting Medicare yet? I just got a couple of big packets from SS that I need to go through. It appears I may be eligible now....not sure.

Take care,
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)