International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

IVIG and Working

Discussion in 'General Treatment' started by Strawberry, Aug 17, 2018.

  1. Strawberry

    Strawberry Senior Member

    Messages:
    907
    Likes:
    1,753
    Seattle, WA USA
    Is it possible at all? From what I understand it takes up a full day, plus migraine and stomach issues for a few days. I need to petition my boss for time off, but need to know what to expect if I finally accept treatment. I don't have short term disability to lean on, but I can take what I need sick leave. Problem is I am the only one (besides my boss) that can do my job.

    So any of you receiving treatment, I'd love to hear how it is for you. Tagging @Learner1 and @Gingergrrl because I know they are currently receiving treatment. Anyone else please respond too!

    (I know most here aren't able to work like I do, but I am mild-moderate, so please excuse the differences).

    24 years is TOO damn long to deal with this.
     
    Gingergrrl, Sidny, 5150 and 1 other person like this.
  2. Dechi

    Dechi Senior Member

    Messages:
    1,166
    Likes:
    2,246
    I don’t know but I want to wish you success with it. I really hope it can give you enough life back that you can feel alive (and kicking, lol).
     
    Mary, Misfit Toy and Gingergrrl like this.
  3. helen1

    helen1 Senior Member

    Messages:
    983
    Likes:
    1,389
    Canada
    @Strawberry
    I’ve been getting IVIG for two years now. For me, it takes 3-4 hrs including travel time. The IVIG takes about 2 hours.

    I’ve had them speed up the IV speed little by little and each time I could handle it ok. I’m a bit more tired with the speedier delivery rate but have had only one mild headache. The sleepiness is the only issue I’ve had. Due to that, my husband drives me to and from IVIG sessions. I usually have a nap when I get home.

    I did have one allergic reaction about a year ago which was quickly reversed with intravenous Benadryl. (Each bag of Ig is different). I really appreciated the fast moving nurse I had that day!

    There’s at least one other thread about experiences with IVIG on PR; you might want to check them out.
     
    Mary and ebethc like this.
  4. ebethc

    ebethc Senior Member

    Messages:
    1,506
    Likes:
    1,140
    how many days does it take you to recover? ie, if you get IVIG on Friday, are you back to your baseline (or better) by Monday?
     
  5. helen1

    helen1 Senior Member

    Messages:
    983
    Likes:
    1,389
    Canada
    @Strawberry
    I’m back to baseline by the next morning.
     
    ebethc likes this.
  6. ebethc

    ebethc Senior Member

    Messages:
    1,506
    Likes:
    1,140
    wow... i'm surprised, but that's great!

    Do you take a small dose?
    How long before you started getting results from IVIG?
     
  7. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,378
    Likes:
    4,515
    London
    I didn't have any issues after IVIG . Did have PEM which was normal for a trip anywhere out of my home. Took Benadryl which made me sleepy.

    The IVIG was given whilst I was lying down flat in an air conditioned area and was peaceful. They left me alone apart from a doctor who came in and checked on me now and then.

    I think it would depend on how far you have to travel and the conditions within the clinic. If it had been in a noisy ward or after a long wait in a noisy waiting room I would have had a lot more PEM.

    The IVIG didn't help my ME sadly.
     
    Mary likes this.
  8. helen1

    helen1 Senior Member

    Messages:
    983
    Likes:
    1,389
    Canada
    @ebethc
    I get a smallish dose of 20 g but am a smallish person too.
    I’m not sure it’s helping me. I stopped doing them for a few months to see if I noticed any difference which I didn’t really but started them again just in case.
     
    ebethc likes this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,905
    Likes:
    34,926
    USA
    @Strawberry I apologize for the delayed reply and am happy to tell you about my experience with IVIG and answer any questions that you have (either here or via PM). I was curious, is your doctor proposing low-dose IVIG for immune deficiency (which can be done in one day or even by SCIG) versus high-dose IVIG for autoimmunity which is usually done over the course of 2-3 days?

    I did high dose for autoimmunity, and also did it at an infusion center b/c I was considered too high of an anaphylaxis risk to do it at home w/a home health nurse. I also require a very, very slow infusion speed to avoid third spacing and risks like pulmonary edema (based on my history). But in general, the slower the speed, the lesser the chances of complications like aseptic meningitis, blood clots, etc.

    IVIG (at least high-dose) is a challenging treatment and for me has a delayed headache, neck pain/stiffness, and immune reaction (chills, slight fever, muscle pain, etc). I have never experienced "delayed PEM" at any part of my illness but the delayed immune reaction from IVIG is pretty similar. My infusions took three full days and then another 3-4 days to recover. So in all, it would take about one week. Then toward the end, we reduced my dose from a 3-day cycle to a 2-day cycle and we reduced the interval from every three weeks, to 4, 5, 6, 7, and then 8 wks.

    I did IVIG for two full years and am now completely done (but will still be doing maintenance doses of Rituximab). IVIG was a HUGE commitment, I cannot minimize the time and effort it took on all fronts, including the battle with my insurance which is not even close to being over. But for me, it was worth every minute of it.

    It would not have been possible for me to work while getting IVIG but I was so incredibly ill, that I could not have worked any way (so in my case, work was not a factor). I have never done low-dose IVIG or SCIG which might have an easier recovery period. Also, each batch of IVIG is different (from approx 100,000 different donors) and some were fairly mild reactions and others were brutal.

    It is great that you are still able to work and you do not need to apologize for that! I truly believe that I will work again even though I am not quite at that point in my recovery yet. I am able to take care of myself and my dog again and will be starting PT in a week. I would love to work again in the upcoming year but we need to see how my remission process continues to progress.

    But in a nutshell, I can't envision someone doing IVIG and then going to work the next day, but we are all different, and maybe not everyone gets the headache and immune reaction that I did.
     
    Last edited: Aug 18, 2018
  10. HeleneG

    HeleneG

    Messages:
    64
    Likes:
    139
    I took IVIG for a couple of years, but then it was getting hard to find a vein. I switched to subcutaneous gamma globulin and it's much easier. I can give myself the shots at home. I was really phobic about shots but these are really small needles and you put them in your stomach or some fatty area. I can hardly feel it. The brand I take is Cuvitru and they sent a nurse to my house for 5 visits to teach me how to use it. I didn't pay anything but perhaps Medicare picked up the cost. I don't know. Anyway I give myself the infusion on a day before an easy day like on Friday night. I'm not really sick, but I am kind of groggy and spaced out the next day.
     
  11. ebethc

    ebethc Senior Member

    Messages:
    1,506
    Likes:
    1,140
    how long have you been on SCIG? have you improved?
     
  12. HeleneG

    HeleneG

    Messages:
    64
    Likes:
    139
    I've been on SCIG for about 6 months. I don't think IGG has helped my ME/CFS but I haven't gotten sick in a long time. When I first took IVIG one dose a couple of years after I got CFS, I went into remission for a number of years. I had hopes for this time, but alas.... (It took over 20 years for me to get IVIG again.)
     
    sb4 likes this.
  13. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,914
    Likes:
    4,994
    Pacific Northwest
    @Strawberry. My experience is in the midfle of those above. I cannot fathom IVIG being done in 2 hours or 3 days. The entire process, from start to finish, takes about 10 hours, including a bag of saline at the end. I sleep a lot of the day on the Benadryl I'm given.

    I am a mess the next day, and recovering for the 2 days after, as it stirs up my MCAS symptoms and I'm getting other people's gluten antibodies (from people who also are celiac). I take dexamethasone, Benadryl, and curcumin to help me over the hump.

    So, it could be planned to minimize missing work, but I am still only working 10-22 hours a week and on LTD, so this is workable for me. I am not ready to work full time. You might check into your state laws on sick leave and disability.
     
  14. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,905
    Likes:
    34,926
    USA
    @Strawberry It's so hard to compare yourself to others and I think you'd get the most comprehensive feedback re: IVIG in some of the private FB IVIG groups. I joined two of them when I was starting IVIG in mid 2016 and it was incredibly helpful to learn about different protocols and experiences.

    Many who do high-dose for autoimmunity did it over a 4-5 day cycle but mine was a 3-day cycle (and in a normal person, my dose could have been done in a 2-day cycle) but I required a very slow infusion speed and absolutely no extra fluids beyond D5-Dextrose to flush the line at the very end for about 20 min.
     
  15. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,914
    Likes:
    4,994
    Pacific Northwest
    Mine was for autoimmunity done in 1 day. I get 55g in 1 day every 2 weeks. I would not want my personal info on Facebook.
     
  16. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,905
    Likes:
    34,926
    USA
    I was just suggesting it to Strawberry as a way to read a ton of info on IVIG in one place and ask questions. I don't give my personal info on FB either and joined purely to get medical information and have no active page, no photos, no timeline, etc.

    I wish I could have done 55 grams in one day but my body is not capable! I did 27.3 grams per day which equaled 27.3 day one, 55 grams total by day 2, and 82 grams total by day 3. I learned a lot from the IVIG groups that I couldn't find anywhere else but agree they are not for everyone.
     
    Learner1 likes this.
  17. Strawberry

    Strawberry Senior Member

    Messages:
    907
    Likes:
    1,753
    Seattle, WA USA
    This is exactly what I needed, good examples of what it COULD be like.

    I'm fairly sure that mine will be for autoimmune, but it hasn't been discussed with Dr K. I also need to look into cranial instability issues like what Jeff had. It probably isn't my entire problem, but I do believe its adding to the whole bucket.

    @Learner, glad to hear you are back to working a little bit again, that also helps me in my decision.
     
    Learner1 and Gingergrrl like this.
  18. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,905
    Likes:
    34,926
    USA
    Glad we could all help and I like how you phrased it, that these were all examples of how it could be (since people's experiences of IVIG can be so vastly different). I will be re-testing autoantibodies for Dr. K around mid-Sept (so I am at minimum eight weeks from my last IVIG) to compare them to 2016 pre-treatment levels.

    Please keep us posted if you will be doing the testing that Jeff did, or starting IVIG, or both.
     
    ebethc likes this.
  19. scarlet56

    scarlet56

    Messages:
    18
    Likes:
    1
    I saw where you responded to pins and needles all over even in brain...I am having Lupus symptoms now like rash on face, rashes on legs, cant take sun, getting full fast when eating, nausea at times, cant take the heat, insomnia headaches. You responded to some about pins and needles is herpes to do valcyte and IVIG where did you go to get this???? This message is for Learner1
     
  20. scarlet56

    scarlet56

    Messages:
    18
    Likes:
    1
    I live in Virginia by the way??
     

See more popular forum discussions.

Share This Page