User Tag List

Likes Likes:  60
Page 3 of 3 FirstFirst 123
Results 21 to 24 of 24

Thread: Rituximab V Azathiioprine (Imuran) advise

  1. #21
    Join Date
    Nov 2017
    Location
    England, West Midlands, Long Itchington
    Posts
    45
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Quote Originally Posted by drz View Post
    This quote sure fits for GPA, doesn't it?
    Never, never, never give up! (Winston Churchill)
    Does kinda fit well...

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

  2. Likes Alysia liked this post
  3. #22
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,195
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Quote Originally Posted by BenHornsby View Post

    One thing I am struggling with on this flare that I have not had before and not sure it's related but timing is perfect, is the amount of cramp I am getting. It's hitting all of my body in strange places and some normal, top of my feet - toes - inside my shoulder blades - mid back - neck, mostly in my toes hand and neck. But some of those places are very hard to stretch it out.. if I stop moving or put my feet up for a rest it just starts and would say I don't have a 2 hour period where it does not hit.

    All of my bloods and results show normal for me excluding the flare markers and the Dr said it could be connected..

    Does anyone else suffer with c4amos to this level, so far I have not come across it in the forum....

    Thanks

    Ben ;-)

    Sent from my SM-G930F using Tapatalk
    Hi Ben, so good to hear things are looking up.

    The advice you got above is amazing. I can say without a doubt that the advice I got on this forum from this group saved my life more than once. I haven't been on here much lately, and there is a funny reason I'm on here today, but that's a different story.

    I just wanted to add a couple of thoughts.

    First. The cramps. I have gotten them so bad the last couple of flares that a few times I have had to stop driving and get out and stretch my legs and feet because they were cramping up above the gas pedal. My 100% guaranteed-to-work-go-to for cramps is topical magnesium. I have it from a health food place that is no longer in business and treat it like liquid gold... I found it also in our local drugstore where they have epsom salts, and it was called something like epsom salt on the go... I brought it with me during my last RTX infusion and there was a gentleman who was on the other side of the infusion room moaning all morning. Finally I asked the nurse what's wrong with him and she shrugged off the answer that he has cramps in his legs. I told her I have topical magnesium that will help him within a few minutes and she shrugged me off and refused to give it to him. A little while later, I asked another nurse to bring him the magnesium and tell him to just rub a little on his cramps. She complied, and literally (I use the term properly, ha ha) within 5 minutes, he stopped. He rolled himself over to me and with wide eyes asked what the heck did I give him. He had never experienced such immediate relief of his cramps.

    So there. I hope that helps.

    Second. I just wanted to share that I am on Imuran all the time, and when I have a flare, I'll get an RTX infusion, while on Imuran, and continue taking my Imuran after the infusion. It really seems to do the trick. I have learned that with each subsequent flare, your body has a harder time bouncing back, and the drugs have a harder time with efficacy. I know RTX is used as a maintenance drug in a lot of places, but since I can't take Cytoxin (lifetime max achieved, ha ha) RTX is my only 'big gun' left to deal with substantial flares, so I want to keep it as my Ace in the pocket. I got diagnosed in spring of 2010, I have had 4 flares since (2010 fall, 2012, 2016, and this last spring) and 4 RTX infusions (the last one only being 500mg vs the 2000mg the previous ones) I don't know if any of this helps in any way, but the more stories you read, the more arsenal you have in your holster.

    Lastly, I'm glad you spoke up with your doc. It's a scary moment the first time, but it's so empowering, and things only get better from there. Kind, gentle, respectful, but firm in your requests and needs. It's quite cool when you go to a GP, and you know you've got a much better handle on your disease than they do. You end up working things out together, and sometimes they even learn something from you.

    I wish you nothing but success.

    Peace,
    marta

  4. Likes Pete, Masha, Alysia liked this post
  5. #23
    Join Date
    Feb 2011
    Posts
    166
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituximab V Azathiioprine (Imuran) advise

    For what is it worth I have had two severe Wegs episodes where I had to go through full on Cytoxan for two years for each episode (1992 & 2011) and my ANCA is never positive. The only way my labs show anything is for the kidney doc to spin my urine and see if there are dysmorphic (misshapen) cells. You really have to go on how you feel, and you have to be your best advocate. Best of luck!

  6. Likes Pete, Masha liked this post
  7. #24
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    77
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituximab V Azathiioprine (Imuran) advise

    Marta,
    You have some great advice. I looked on Amazon for topical magnesium. They have lotions and oils, most refer to leg cramps and leg pains. I found my Epsom salts bath before bed does the trick. But my leg cramps only came at night. Think I’ll get a bottle of this stuff just in case.
    You are right on about vaccines. Stupidly, I got the pneumonia one and it caused a flare. Per, what you said I am not getting the flu one. The one they gave last year did not even address the flu that was out. I am safer wearing a mask and gloves. My problem is I had the first half of the new shingles shot (Iam 68). Now due for the other half before my next Rituxan series. I read where one in three over 65 get shingles, double that for RA, more for lupus and GPA. But then yesterday a friend from out of state called. She is 75 and has RA. Her Rheumatologist told her she’s met with other Rheumatologists and they don’t feel they have enough data to say this vaccine is safe for autoimmune. Then my friend found an article in a seniors magazine that said not to get it.
    You are up on all this. What is your feeling? Do I stop midway or finish it off? To put you in the clear, I am not asking for medical advice, just your informed opinion.
    Masha

  8. Likes Alysia liked this post
Page 3 of 3 FirstFirst 123

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •