Scheduled to get IV's of Immunoglobulin next week

Discussion in 'Fibromyalgia Main Forum' started by swedeboy, Aug 7, 2007.

  1. swedeboy

    swedeboy Member

    Dr.Montoya has prescribed 5 seperate IV's of Immunoglobulin and I start on Monday the 13th through Friday the 17th. The nurse on the phone said that each one can take up to 4 hours. I have no idea what to expect. Dr. Montoya just said to call him if I "get worse" from the IV's.

    Does anyone have any info that might help me before I go on Monday?

    Thanks, Sean
  2. snowathlete

    snowathlete Guest

    My IgG is 24.6 - I'm waiting on more results but guess that I may be prescribed IVIG. Is anyone with high IgG able to reply and tell me how my level compares?
    <br><br>[<i>This Message was Edited on 05/06/2013</i>]
  3. snowathlete

    snowathlete Guest

    My IgG is 24.6 - I'm waiting on more results but guess that I may be prescribed IVIG. Is anyone with high IgG able to reply and tell me how my level compares?
    <br><br>[<i>This Message was Edited on 05/06/2013</i>]
  4. IanH

    IanH Active Member

    This thread makes interesting reading regarding immunoglobulin IV for ME/CFS.&lt;BR&gt;
    I wonder what happened to swedeboy?
  5. IanH

    IanH Active Member

    This thread makes interesting reading regarding immunoglobulin IV for ME/CFS.&lt;BR&gt;
    I wonder what happened to swedeboy?
  6. roge

    roge Member

    hi ian &lt;BR&gt;
    &lt;BR&gt;
    i have wondered about swedeboy as well - u out there?&lt;BR&gt;
    &lt;BR&gt;
    i am on this thread and posted back in 2008 &lt;BR&gt;
    &lt;BR&gt;
    geez i wish it was still 2008 as i am much sicker (more so my tendons) now than back then and way less functional &lt;BR&gt;
    &lt;BR&gt;
    my fibro is very severe now and has affected major tendons now - started with plantar facia, then ankle tendons, then hand and wrists , now achilles and knee patella where inserts on bone and can barely walk and i have varioius falls in last 1-2 years affecting both biceps and low back connective tissue and as many with fm know, we dont heal well at all and now (takes like 1-2 years to heal tendon injures to just 40% ) and then even that i get bad sharp pains when i use the tendon that was injured. &lt;BR&gt;
    &lt;BR&gt;
    it has been an utter nightmare seeing my once fit body gradually deteriorate over last 4 years as well as trying to get help and some answers up here in canada as most rheumatologists where i live (ottawa) dont want to see us - i cant even see one just to make sure i dont have something other than FM as from my understanding FM doesnt involve tendon pathology as i have (both tenosynivtis and tendinopathy) but then again some research is showing that tendinoptahy is found more in those with FM than the general population - i suppose a complication from weaker muscles and deconditioning due to pain&lt;BR&gt;
    &lt;BR&gt;
    cheers&lt;BR&gt;
    &lt;BR&gt;
    kyle
  7. roge

    roge Member

    hi ian &lt;BR&gt;
    &lt;BR&gt;
    i have wondered about swedeboy as well - u out there?&lt;BR&gt;
    &lt;BR&gt;
    i am on this thread and posted back in 2008 &lt;BR&gt;
    &lt;BR&gt;
    geez i wish it was still 2008 as i am much sicker (more so my tendons) now than back then and way less functional &lt;BR&gt;
    &lt;BR&gt;
    my fibro is very severe now and has affected major tendons now - started with plantar facia, then ankle tendons, then hand and wrists , now achilles and knee patella where inserts on bone and can barely walk and i have varioius falls in last 1-2 years affecting both biceps and low back connective tissue and as many with fm know, we dont heal well at all and now (takes like 1-2 years to heal tendon injures to just 40% ) and then even that i get bad sharp pains when i use the tendon that was injured. &lt;BR&gt;
    &lt;BR&gt;
    it has been an utter nightmare seeing my once fit body gradually deteriorate over last 4 years as well as trying to get help and some answers up here in canada as most rheumatologists where i live (ottawa) dont want to see us - i cant even see one just to make sure i dont have something other than FM as from my understanding FM doesnt involve tendon pathology as i have (both tenosynivtis and tendinopathy) but then again some research is showing that tendinoptahy is found more in those with FM than the general population - i suppose a complication from weaker muscles and deconditioning due to pain&lt;BR&gt;
    &lt;BR&gt;
    cheers&lt;BR&gt;
    &lt;BR&gt;
    kyle
  8. roge

    roge Member

    I am + for parvob19 igg as well but dont know the level as the stupid public labs up here in canada dont reveal. i was tested in2007 and the infectious disease dr. said he was going to do a PCR but then said he couldnt and that was that and i just left it. travelled to los angelas in 2007 to get some testing and was + for coxsackie B and Cpn. &lt;BR&gt;
    &lt;BR&gt;
    cheers
  9. roge

    roge Member

    I am + for parvob19 igg as well but dont know the level as the stupid public labs up here in canada dont reveal. i was tested in2007 and the infectious disease dr. said he was going to do a PCR but then said he couldnt and that was that and i just left it. travelled to los angelas in 2007 to get some testing and was + for coxsackie B and Cpn. &lt;BR&gt;
    &lt;BR&gt;
    cheers
  10. swedeboy

    swedeboy Member

    Hi Y'all I'm still here! I'm still a patient with Montoya. My health is relatively the same. I wish I had better news to report. Thanks for thinking about me. &lt;BR&gt;
    Peace,&lt;BR&gt;
    Sean
  11. swedeboy

    swedeboy Member

    Hi Y'all I'm still here! I'm still a patient with Montoya. My health is relatively the same. I wish I had better news to report. Thanks for thinking about me. &lt;BR&gt;
    Peace,&lt;BR&gt;
    Sean
  12. mbofov

    mbofov Active Member

    Have you taken any fluoroquinolones (e.g., Cipro, levaquin etc.)? These ABX are notorious for causing tendon damage and rupture. One of my sisters had tendon damage in several parts of her body, which she attributed to one of these ABX.&lt;BR&gt;
    &lt;BR&gt;
    Magnesium is very important for tendon health, and I told her to try magnesium oil on the affected areas, and the next time I saw her she was smiling - it had helped her a lot. You can get magnesium oil on-line or at any health food store. Even if you haven't taken these ABX, mag oil may help you anyways - whew! sorry you have to go through this -&lt;BR&gt;
    &lt;BR&gt;
    Mary
  13. mbofov

    mbofov Active Member

    Have you taken any fluoroquinolones (e.g., Cipro, levaquin etc.)? These ABX are notorious for causing tendon damage and rupture. One of my sisters had tendon damage in several parts of her body, which she attributed to one of these ABX.&lt;BR&gt;
    &lt;BR&gt;
    Magnesium is very important for tendon health, and I told her to try magnesium oil on the affected areas, and the next time I saw her she was smiling - it had helped her a lot. You can get magnesium oil on-line or at any health food store. Even if you haven't taken these ABX, mag oil may help you anyways - whew! sorry you have to go through this -&lt;BR&gt;
    &lt;BR&gt;
    Mary
  14. snowdonia92

    snowdonia92 New Member

    Hi Sean,

    My Dad has a rare immune disorder and has been receiving these treatments for over 10 years.

    What they do is put an IV in your hand or arm and let the IV "bag" run out into your vein. My Dad's treatments take about 4 hours. He says that they do not hurt, whatsoever.

    You can watch TV or read while you are getting the treatments.

    I really hope this helps you! Are you on valcyte as well? Why are you receiving this treatment too, if I may ask?

    Take care, sending you best wishes for a full RECOVERY.
  15. swedeboy

    swedeboy Member

    Thanks for the info!

    Dr. Montoya has prescribed the IV's of Immunoglobulin because I have elavated IgG for Parvovirus B19. My IgM is negative.

    I just hope the IV treatments don't make me feel worse and or exacerbate my CFS symptoms.
    <br>[<i>This Message was Edited on 08/07/2007</i>]
  16. snowdonia92

    snowdonia92 New Member

    Hi Sean,

    You're very welcome! I can totally understand why you would be concerned. Anything new is always scary, for sure. I would be scared too and worried that I would get worse. Getting worse is the one thing you do NOT want when you have CFIDS.

    Just think of the immunoglobulin flowing into you as something that is HEALING to you- however you want to visualize that.

    I really hope this helps- please let us know.

    :)
  17. Elisa

    Elisa Member

    I know just how you feel - I worry every time I try something new - I am always fearful that I will get worse...but I may GET BETTER too.

    Anyway your situation brought to mind something I've been studying lately. There is a article/paper by Dr. Faith Uckun about his findings and he believes that CFS is a B-cell immunodeficiency (CD19 cells) and that essentially means that there is not enough immunoglobulin. They call it hypogammaglobulinemic. And, of course, the treatment is IVIG or intravenous immunoglobulins.

    I hope this info helps. I'm pulling for you and let us know how you do.

    God Bless You,

    Elisabeth
  18. TXFMmom

    TXFMmom New Member

    I had a series of four IV IG's last year because I was so suppressed from my pain med having done too many injections on me.

    I had asked him to monitor my adrenal activity, and he should have, but NO, NOT WHEN HE IS MAKING $7,500 FOR EACH INJECTION.

    Anyway, the IV's actually made me feel much, much better.
  19. IntuneJune

    IntuneJune New Member

    Please keep us updated.

    My doctor is petitioning the insurance company for me to receive the IVIG's.

    I have not heard anything yet.

    It took me some serious thinking before I agreed to go ahead.

    Also got a second opinion.

    Will be watching for your update.

    Fondly, June
  20. swedeboy

    swedeboy Member

    Thanks for all the feedback!

    I'll keep ya'll posted.

    Smiles, Sean
  21. wrthster

    wrthster New Member

    Hope you are well, I don't think I have seen one of your posts in a while. I did IVIG for three months or three infusions. On me, they used it for Immune Subclass Deficiency. My biggest problem with it was that it was to much at once. It killed off a lot of crap at the same time and for me I found it seemed to almost over stimulate the immune system.

    But I do want to say that we are all different. IVIG can be potentially very beneficial. I think Dr. Montoya probably said that to you because IVIG is very powerful stuff and that can be a potential side effect. I guess my only suggestion is to take a benedral prior as they probably told you. I wish I could tell you more, but google it and I would say understand it. I am curious did he also check your IGG subclasses?

    Good luck with it, if you have tried many other treatments and not seen much improvement than this is probably worth a try. It may potentially have a number of benefits but also remember it is live blood plasma donated from a pool of donors. I am sure Dr. Montoya covered all this with you.
  22. dobrydy

    dobrydy New Member

    You will need to be pre-medicated, the most common being benadryl. There is also an important question of how to administer IV IG to minimize side effects.

    The topic of IV IG administration is enormous and is very well covered at the primary immune deficiency foundation website, primaryimmune.org. This is where I would go for all my IV IG questions.
    These patients need IVIG to treat infections and they have a huge collective knowledge, regarding side effects, method of administration, pre-medication, immunoglobulin brands etc, too many to cover here. They have message boards like here and you can find a ton of information there. Folks on these boards are very helpful and they also allowed to post their emails and phone numbers.
    Please let us know how it goes for you. Good luck.
  23. winsomme

    winsomme New Member

    maybe have some Gatorade something like that.

    but don't over drink either because that can stimulate the body to get rid of liquids too.

    so basically just try and drink adequate fluids.

    maybe ask the Doc about hydration too. just to make sure.


    thanks
    bill
  24. winsomme

    winsomme New Member

    check out this site:

    http://www.cidpusa.org/P/ivig.htm

    go to the main page to:

    www.cidpusa.org

    this, i believe, is a site for people with an immne deficiency who use this medicine.

    good luck.

    thanks
    bill
  25. swedeboy

    swedeboy Member

    Wow so much stuff to think about. No one mentioned pre-medication like benedral? What's the benedral for? The only thing I was told was that it takes about 4 hours and I go every day for 5 days straight. Other than that I know nothing about the procedure.

    I am very curious what the benedral is for?

    thanks, Sean
  26. LISALOO

    LISALOO New Member

    Keep us updated on how you feel afterthem. I've been following your posts and would love to know the results.
  27. anjalik

    anjalik New Member

    Hi Swedeboy,

    I had the same infusion with Dr. Montoya at the beginning of July. The infusion is through your vein at your elbow or wrist region and does last for 3-4 hours depending on your weight. They will offer you Tylenol and Benadryl 30 minutes prior to actually injecting the fluid as the IV can cause a temperature spike. Its relatively painless, but it caused me to become quite sleepy during and for a few hours afterwards and caused me some muscle soreness near the injection site (which a heat pack they gave me helped dispel). For the first few days, I felt pretty well- just a little more tired than usual- but on the third day, I got a fever, headache, nausea, and vomiting- symptomatic of IV injections. I saw Dr. Montoya, who said I had just begun to react to the IV. The vomiting ceased that day but the other symptoms continued for about a week. Following that, I've since been more tired, had more difficulty sleeping, and had a dull, persistant headache. The worst part for me was the headache, which felt like a severe migraine and eventually went away after the aforementioned week. In retrospect, I probably didn't drink enough water, and would recommend you hydrate as much as possible. All in all, its not necessarily going to be that much fun, but the painful symptoms you could potentially experience shouldn't last that long and are (as Dr. Montoya has told me) usually a sign of recovery. Most of the patients Dr. Montoya has treated have done well with it- hope you do too. Best of luck!
  28. swedeboy

    swedeboy Member

    thanks for the great details.
  29. 7552

    7552 New Member

    Hi Swedeboy,

    I completed the 5-day IVIg treatment for Parvovirus in early July as well. I would definitely recommend taking Tylenol regularly (both before and after the infusion) to manage the headache that can result from the treatment.

    Benadryl is generally given to manage the possibility of an allergic reaction. You may have to have Dr. Montoya specify on the infusion order if you are to get Tylenol and Benadryl as premedications, though.

    Good luck! I hope it goes well!



  30. 7552

    7552 New Member

    And I was wondering: how are you doing after your IVIG, Anjalik? Would you say you feel better overall? Have you also been taking Valcyte?

    Thanks!
  31. anjalik

    anjalik New Member

    Hi 7552,

    I haven't been doing all that well since the IVIG. I was hoping it would work as I only have HHV6 and Parvovirus and it seemed like the best solution. I started on Valcyte about a month prior to the IVIG, which I haven't really had any reaction to- good or bad. Since the IVIG, I've been feeling more tired, and Dr. Montoya has scheduled me for another type of infusion as the time period for recovery (abt a month) has elapsed. Its hard to gage my recovery as I just found out I have sleep apnea and it will take another month to get the appropriate treatment. I'm still feeling body aches and fatigue from short walks though, which seems to indicate that my CFS hasn't disappeared. How are you doing since the treatment (and the Valcyte if you're taking it)? I'd be interested in any details as Dr. Montoya has told me there's only a few people with my viral breakdown and who've undergone similar treatments.
  32. IntuneJune

    IntuneJune New Member

    About two months ago I was found to have sleep apnea. Have been on the CPAP machine and had a retest with CPAP.

    My machine is set for a pressure of 10, I only need 6 it was determined on the second sleep study test.

    I frequently pull the mask off which is very common when it is set too high (also when it is set too low).

    I have not noticed any help yet from the CPAP.

    The doctor's office is on vacation, when they get back, I want the machine to be reset. (The respiratoory therapist does not allow patients to do this themselves.)

    Also the doctor is going ahead with the paperwork for the IVIGs. I was hoping to get a big boost from the immunoglobuin.....

    You mentioned you are scheduled for a different type of infusion..... immunoglobulins??? are there different types, or different altogether.

    Fondly June
    <br>[<i>This Message was Edited on 08/09/2007</i>]