Jump to content


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


Photo

Decision making in systemic sclerosis: A guide for primary care


  • Please log in to reply
3 replies to this topic

#1 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 14 June 2010 - 05:08 AM

Decision making in systemic sclerosis: A guide for primary care.

Skin involvement may be the cause of morbidity in systemic sclerosis (SSc), but morbidity and mortality often are related more to coexisting internal involvements. Major organ involvements usually begin early and should be detected early for early treatment. Raz Khavari, MD. (DiagnosticImaging.com) The Journal of Musculoskeletal Medicine. Vol. 26 No. 7. July, 2009. (Also see: Diagnosis and Mortality and Prognosis)

This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#2 erika

erika

    Silver Member

  • Members
  • PipPipPipPip
  • 106 posts

Posted 16 June 2010 - 03:19 AM

Dear all,

I found this article very informative and helpful. It advises health check intervals for various problems of scleroderma. I did not know that renal crisis in diffuse sclero can come just without advance noticing and that you have to check your blood pressure 3 times a week to predict this happening :unsure: ! Does anybody do that? The article doesn't say how often creatinine levels have to be checked. Do they announce renal problems earlier than blood pressure?

Did anybody here online have renal crisis? How do you know this is happening? Did you manage to get to the ER in time? Did the doctors know what to do with you?

Too many questions! I just feel very uncomfortable thinking that at any time I can get into renal crisis. :sick2:

Scared and feeling helpless, sending you regards.

Erika

#3 janey

janey

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 16 June 2010 - 08:14 AM

Erika,

Because I am on Tracleer (Bosentan) I have to get bloodwork monthly. My rheumatologist includes a check of the creatinine. In addition to getting my blood pressure checked at every doctor's visit, I usually check it myself once a week.

We do have a section on scleroderma renal crisis if you'd like to read up on it. In addition to high blood pressure and increased creatinine levels, another sign might be blood in the urine or back pain (re: about.com). It used to be fairly common with scleroderma, but now only about 20% of scleroderma patients will get it (re: ISN). It's another one of those things that require us to really know our bodies and when things feel different, try to determine what's going on. Like yesterday I was exhausted so I took my blood pressure and it was 90/50. I drank a couple of glasses of water and an hour later it was at my normal rate of 100/60 and my exhaustion had decreased. So - know your body! Hope this helps.
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 erika

erika

    Silver Member

  • Members
  • PipPipPipPip
  • 106 posts

Posted 29 June 2010 - 02:39 AM

Dear Janey,

After a week spent on vacation my panic level regarding renal issues has decreased but I have found the strength to book my regular meeting with rheumathologist for end of July. I will keep an eye on my blood pressure more often. Just in case...

It is a good idea to drink a glass of water from time to time. It might help for many problems! :VeryHappy:

Regards,

Erika