Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

I thought I was a pharmacy before...


  • Please log in to reply
2 replies to this topic

#1 amberjolie

amberjolie

    Silver Member

  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 30 June 2012 - 04:58 PM

I'm sure you can all relate, perhaps a lot of you more so than me.

Recently I saw my new rheumatologist, who did an ultrasound on my finger joints, and was very surprised at how inflamed both the skin above and the tissue underneath the tendon was. She didn't think they would be by looking at my hands.

Anyways, we talked about how the methotrexate didn't seem to be much help, and she prescribed lefluconimide (or something like that), that I had hoped would replace the methotrexate, but apparently is to be taken as well as the methotrexate!

Also, she prescribed diclofenac to see if it would help the pain, and then raberprazole to protect the stomach.

Add to that my thyroid pills, salagen for dry mouth, multi-vitaimins, and cranberry tablets and folic acid to counteract the methotrexate (higher risk of urinary tract infections and depletion of folic acid), and I feel like a walking pharmacy!

Also, she got more bloodwork done, and if my CK levels are still high or climbing, then she'll order an MRI on my thighs. Oh, and with the methotrexate and lefluconimide, I get to get blood taken every 2 weeks. Yay! (I'm sure some of you are probably snickering at that remark, going through much more than that...so please forgive my whine...)

Hopefully something will work, though. If in a couple of months it doesn't seem to be helping, we'll talk biologics (which I brought up with her this time because my husband is on them for his condition so I thought I'd ask).

So, thanks for reading this far. Just felt like venting.

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 30 June 2012 - 11:43 PM

Hi Amberjolie,

Well, your new rheumatologist does seem to treating you seriously at least!

I can relate to your concerns as I have to take an immune suppressant and steroids and then medications to counteract the side effects of those....and then medications to counteract the side effects of those....etc, etc...and so the long day wears on!! :lol: Thankfully, I only have blood tests every 6 weeks, not every two like you, now that I've been on the medications for a while and things have settled down.

I do hope that the combination of your medications does improve things for you and then it will seem a bit more worthwhile taking them!

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 02 July 2012 - 12:05 PM

Hi Amberjolie

I'm taking MTX but found it took about 6 months before it made any difference to me and I have only just gone to monthly blood tests a few weeks ago; it's so nice not to feel like a pin cushion every few weeks. I also take Folic acid along with a long list of other medications; I had to miss one week of the MTX and I really noticed the difference with more joint pain etc.

I do hope things settle for you soon.

Take Care

Buttons