Anyone tried IVIG (intravenous gamma globulin) for CFS?

Discussion in 'Fibromyalgia Main Forum' started by busybusymom, Aug 31, 2005.

  1. busybusymom

    busybusymom New Member

    I've posted this question before, but maybe some newbies have tried it??

    I had a second round of it (18g) last week - felt more stamina, endurance until today when I could barely get out of bed. I've been a walking zombie all day. Also found out I have a reactivated infection and low C4.

    Ugh, Ugh, Ugh...

  2. Sidnee

    Sidnee New Member


    I just received notice today from my infectious disease Dr. that I was approved by my insurance company for the IVIG. I will have my first infusion a week from today.

    How did you feel during the IV? After the IV? I have read that it can make you nauseous and achy, kind of like you have the flu.

  3. busybusymom

    busybusymom New Member

    Hi Sid,
    Yes, what you said can happen, but I had no problems at all. I felt a little achy when I had it done the first time, but it only lasted for the evening. I take a little Klonopin and a little Reglan (for nausea) before. I also had a small breakfast. The NP who administered it was surprised I tolerated it so well. I'm definitely lucky in that fact.

    Unfortunately, I have to pay about $600 out of pocket for it, but if it works it will be worth it. I saw a rheumatologist today who thought I could have more than 18 grams (1,800 ccs). He thought I could go up to 30 grams!! I was told that the amount you get it based on your weight. I will have to check with my NP - check with your doctor on that one, too.

    I was told by another dr's office that there is a shortage of the IVIG. Check with your doctor on that, too, and make sure he/she can get it for you; otherwise find someone else who can. Somehow my NP was able to get it for me, whereas the MD I had it done with once, was not able to get it. Go figure.

    I am having it 1x per month for four months and then will reevaluate. What did your doctor suggest as far as length of treatment?

  4. busybusymom

    busybusymom New Member

  5. Sidnee

    Sidnee New Member

    My ID doctor has nurses and a pharmacist on staff for infusions in his office. I know they have the meds. I was told to drink lots of water the day before and the day of. I am hoping the chairs are comfortable and hope I can get up and move around a bit. I have osteoarthritis in my hips and spine. It is very painful to set for the long.

    Thanks for the info Busy

  6. busybusymom

    busybusymom New Member

    Please post and let me know how your infusion goes. Chairs are the best! Where I go now I have to lie on that uncomfortable examining table! Yeck!

  7. cerise

    cerise New Member

    From 1996 to early 2000 I was injecting gamma globulin(thigh muscle) weekly along with a B-12 shot. I was under the care of a CFS Specialist (Allergy & Immunology) during this period of time.

    I moved out of state and where I moved to the doctors had a fit. I also had a problem with the rising costs and later the availability of gamma after the FIRST Gulf War started.

    I noticed a difference. I know I'm not in the majority.
    It has been 5 years now, and I have gone downhill and am now home bound the majority of the time, something I never was before.

    I have noticed that folks who are Rh negative blood types, seem to benefit more from the gamma globulin injections.

    If I could, I would start it up again (and I'm scared to death of needles).
  8. busybusymom

    busybusymom New Member

    What state are you in? No one should be denied treatment that is beneficial to them!!! I live in Southern California, and there are 5 (that I know of) places where I know I can get either the injection or IV. One is through and hematologist/oncologist, ENT, family nurse practioner, allergist, and UCLA.

    Please don't give up trying to find someone. I notice a difference also when it wears down. Even if it is just for a few days or couple of weeks that our energy is up, it is worth it!

    If you need help finding someone I can help you. Please let me know.

  9. busybusymom

    busybusymom New Member

  10. cerise

    cerise New Member

    I lived in Sacramento when I was doing the gamma globulin injections & my doctor was located in the next county over in Roseville. My only problem was the shortage after the first Gulf War started and the price for a single vial exceeded the cost of a 3 month prescription! At that time there were only a select few pharmicies in 2 counties that stocked gamma for patient use. They were great at letting me know when a shipment was available.

    I moved to OREGON, and when I saw my new PCP and asked for refill she had a cow and told me I had to STOP using gamma immediatly! I received the same response from 2 other doctors too and it was so documented in my charts! I was told that it was an "experimental treatment" that had not been established or approved and that I didn't need it.

    I mean this one doctor was really appalled like I was injecting human blood or something (I don't recall). I also asked my CFS Specialist in Portland about starting it back again and he declined to write a Rx for it plus I found out the insurance would not cover it and I'm flat broke since it's take SSA 10 years to decide that my CFS Specialist that prescribed the gamma is not a credible medical source based on his chart notes as opposed to his summary opinions.......

    Remember, just like the symptoms of this DD,the benefits of any treatment are only "self-reported" & if doctors don't think we're all that credible when it comes to having this illness, they probably feel the same about anything positive we say about treatment.

    So, I say to them why I am going downhill and getting progressively worse?
  11. cerise

    cerise New Member

    What's the going rate these days for gamma?

    You're not having any problems getting it even with all the troops deployed in the middle east?

    At the same time I started the gamma globulin intramuscular injections at home, there was a lot of press because Kaiser had cut off their patients that were receiving IV drips in large quantities which they swore by. It was getting too costly according to Kaiser and until there was more definitive proof (as well as approval by CDC) they refused to continue the treatment at their hospitals.

    I have been battling an infection for years now that comes and goes and stays longer since I stopped the gamma.

    I wouldn't notice it at the time, but gamma really helped me with endurance and recovery rate was so much quicker as opposed to non-existent like now!

  12. busybusymom

    busybusymom New Member

    I was told about the shortage, as well, because of the Gulf War. I was warned by my ENT (who first treated me, Paul Toffell, MD - check his website) that there may be a time where he wouldn't be able to get the gamma, but thankfully he never did. I started seeing him about 4 years ago - got 2cc IM every month. He did a study about the relationship between Ebstein barr virus and chronic sinusitis and found that the IgG was helpful to his ill patients. He was the one who suggested I look into IVIG because my titers were so high (600 X normal - they are still high- my last tests a couple of weeks ago show an reactivated infection and low complement C4). BUT, the reason he really wanted me to have it done was because a report came out that many military personnel who had HIGH EBV titers were developing MS, many of them in their 30s. You can also check this out on the internet - look up MS and EBV - and take the info to your crazy doctor!!!!

    I had 2 infusions last fall - it cost me about $600 out of pocket because I was going to a NP who was a fee-for-service office. The gamma was around $1800 for 18 grams - I received 12g the first time (didn't really do anything), then 17 the second time (had a better result). Then my NP went on medical leave, so back to the shots. Two ccs was $55.00 - by now I getting them every week.

    This past July I saw a local oncologist who gave me 18g - the gamma was $2400 - insurance paid everything because I have met my OOP for the year. Then I got a call a few days before my next infusion was due (I am to go once monthly), and was told that there was a national shortage of the IV gamma and that the doctor was screening patients who were to receive it. But even if he approved you to get it, I would have had to go to UCLA, and even there, they could deny you the treatment if you weren't sick enough. Basically UCLA is giving it only to oncology patients, bone marrow patients, etc., and I knew I didn't fall into that catagory. Thankfully my NP came back from medical leave, and she was able to obtain the IV gamma with no problem - go figure. But, because of the shortage, the price went up and I had to purchase 10g vials instead of 6g vials. The cost just for the gamma was $2400, and that was a couple of weeks ago. Hopefully my insurance will pick up close to 70% of the gamma and the office visit.

    I just had an apppointment with a rheumatologist yesterday who gave me the info on the lab work I told you about, and he thinks I could go up to 30g of gamma (which obviously I won't). But he thinks that IV gamma is a good idea for CFS patients if it works for you. He also wants to put me on Famvir - an antiviral. That is something else you could check into.

    The whole thing is very frustrating. I can hear your frustration in your post. I wish I could do something for you. Just keep searching - go to as many doctors as possible until you find one who will help you get the gamma. I have been to doctors who think it's a crock of crap, but THEY AREN'T THE SICK ONES!!!!

    I have punched in "chronic fatigue syndrome and gamma globulin". There are articles that you could show these idiot doctors. Even if there is a shortage (like the oncologist's office told me), there are so many different pharmacies that can get it.

    I hope I helped. I know I kind of went on and on, but I know how you are feeling. I know we can't get addresses and such on this site, but look on Paul Toffell, MD's site. His phone number is 818-790-3172 (Glendale, CA). Ask them to mail you his article on EBV and chronic sinusitis. You can then take this to every doctor you see until one will help you.

    I wish you the best ---


    P.S. By the way, this is NOT an experimental treatment - it's been used for MANY years to help us CFS patients!! Your doctors are just plain ignorant!!!
    <br>[<i>This Message was Edited on 09/01/2005</i>]
  13. cerise

    cerise New Member

    I grew up in LA (valley girl), so I'm real familiar with SoCal. I have had this DD since 1987 and have been forced to educate myself about this illness. That unfortunately has been used against me by the SSA, especially since doctors have to rely on the patient's "self-reported" symptoms. According to 3 ALJ's I'm so well informed on the subject I have managed to manipulate and con at least 4 different physicians, 3 of which are CFS Specialists (Infectious Diseases) in 2 different states over the past 18 years.

    That's a whole other story - I'm still fighting for SSDI since first filing 10 years ago!!!!

    Right now, I would be happy to at least find a PCP that is taking new patients and doesn't heard patients through like cattle going to market. It would also be nice if the PCP believed CFS/ME is a "real" PHYSICAL (not psychological) illness. Until there's a test which can identify it, my PCP says he still isn't sold as to it's authenticity. Ironic that my cFS Specialist was his former instructor in med school for infectious diseases.

    Since my insurance will NOT cover any treatment for CFS or anything related to CFS or Fibromyalgia, I'm SOL when it comes to getting gamma at this point in time. I paid cash when I used to get it in Calif. but that was before I knew I was going to be wiped out financially because SSA would take over 10 years to decide my case!

    My CFS Specialist wants me to get an MRI because my fibromyalgia has gotten worse due to lack of treatment. The MRI will determine if I need surgery or not due the degenerative disk disease and spinal cord injury. The only hang-up has been my PCP and insurance prior authorization.

    I really thought neither myself or anyone else would be still be dealing with a skeptical medical community, but to tell you the truth I have not seen any progress from when I first was seeking treatment for CFS back 1987(Chronic Epstein-Barr virus prior to 1988).

    I'm really glad to hear that gamma has worked in helping someone else too! I have seen more negative than positive, but that's been from the medical community, not the patients. Too bad nobody seems to be the least bit concerned with finding some relief for PWCFS and to help us improve our quality of life!

    I will check out the website. Here's one for you to check out called

    FYI = when I first started on gamma in May 1996 it was $20 for 4 vials (or 1 month worth of treatment for me)!
  14. BeckieC

    BeckieC New Member

    I wanted to try back in 2004. But those doctors offering said I was too far gone. I am dying. Now, there is an oral product called Digilen 3. Has pro-biotics, immunoglobulin and digestive enzymes. After 20 years, I am deficient on all 3, and have to take mega-loads of digestive enzymes every day. One of the viruses in the cocktail vaccines destroyed my veins and my heart wall, so I can't get immunoglobulin by IV any more. Insurance and medicare don't pay, and I have not asked my grant to help me pay for it yet. I am ordering the stuff this weekend. I have found that digestive enzymes saved my life. My ticker was in bad shape, hurting a lot, racing all the time, stressed out because I am STILL fighting with VA over vaccinating me to death. I never deployed because I got too sick. Then they decided they needed a warm body to stay behind when filthy contaminated equipment started coming back to Fort Hood in March 1991. So I got same exposures as those that served in Northern Saudi. I just can't get the compensation because the VA docs are so unethical and so STUPID. ALL OF THEM. They know nothing about the immune-gut system, and won't admit it. They can't stand a soldier that knows more about medicine overall than they do, either.
  15. CDRWAR07

    CDRWAR07 New Member

    My wife's career as a family physician crashed and burned in July 2006 due to her CFS.&lt;BR&gt;
    In January of 2007, I thought she was going to die. I wrapped her a blanket and drove from Valparaiso, IN to a clinic in Troy, MI. The Gamma Goblin saved her life.&lt;BR&gt;
    She is now under the care of our family physician. He has ordered gamma goblin, but there is a shortage. We are looking for some as I write.&lt;BR&gt;
  16. inprog

    inprog Member

    I used to use Gamma Globulin but I got tightness in the chest the last time for my last injection so they won't give it to me. A generic version of Kutapressin helps my CFS condition a lot. I get mine from a CFS clinic in Torrance, CA. What works for one person does not work for another unfortunately, I have heard. I am fortunate to have some alternative that works in my case. I am not a physician and the advice I give is only based on my experience and should not be construed as medical advice.&lt;BR&gt;
  17. ruti

    ruti Member

    Hi &lt;BR&gt;
    I am getting gamma globolin infusions for about 2 years - once a month - 20 in amount.&lt;BR&gt;
    I get it in a hospital and it takes 5-6 hours. I got it not because I have Fibromialgia but because my Igg levels ( a sign for the level of antibodies in the body) is very low - it is called - Common variable immune defieciency - CVID or Agglobolinia (A = stantds for low iga that some people have). I also have a very low IGA level but the igiv is to treat the igg level.&lt;BR&gt;
    They take blood tests before and after the infusion (and now mainly before) and the level is going up and down. I strated with a level of 156 (15) which is very low - the normal is above 700. &lt;BR&gt;
    I get to around 600 before infusion and sometimes less (450). After the ifsusion is going up and over the month is going down. &lt;BR&gt;
    They base the amount and frequncy on the levels of the igg and the health situation - mainly if you get infections (phnemonia for example).&lt;BR&gt;
    It is a blood product - the antibodies of many people are produced from &lt;BR&gt;
    the plasma of blood donners. The product is been checked for many viruses and also goes procedures to kill viruses or bacteria. It is as safe as they can make it. &lt;BR&gt;
    You need to evaluate the benefits with the risks. It is a blood product &lt;BR&gt;
    - it can contain a less known (or one that is not checked) virus.&lt;BR&gt;
    Many people have some side effects -usually minor - especially on the day of recieveing it or the next day. Headhacks, tireness, some low fever.&lt;BR&gt;
    The body is getting a large amount of proteins at once and it takes some time to adjust. Yes - you do need to drink a lot.&lt;BR&gt;
    There have been some more serious adverse reactions - even a stroke.&lt;BR&gt;
    It is important to my mind to check if a person has more risk for blood clots.&lt;BR&gt;
    A new way to get the ivig (in the U.S) is through under the skin injections (which are not the painful injections people used to get to the musle before the iv was availiable.) You can do it at home once a week for a shorter time and wear it on a small poutch and can work or do your routine things.&lt;BR&gt;
    It is not approved yet in my country and the one woman I know who is doing it has to pay from her pocket.&lt;BR&gt;
    I got approved for the igiv and I pay some of it for the maximum for chronic patients (it is not as much as it costs).&lt;BR&gt;
    It is very important to get the iv slowly to prevent bad reactions.&lt;BR&gt;
    If you have a very low iga you need to be extra cautios and prefebaly get the iv from a product that contain low iga such as Gammagurd. People whose body doesnt recognize iga since it is so low in their body can go into a shock.&lt;BR&gt;
    I have very low iga and the national health plan that we have didn't aprove for me to get a spicial product and approved a local product. I took the chance and I did OK and since that I am ok with moderate levels of iga in the iv.&lt;BR&gt;
    I will be happy to answer questions on the ivig. Ruti
  18. inprog

    inprog Member

    Thank you for all the time and effort put into your post here. You must have had angels too to guide you on the right path to a diagnosis. I do have a clotting disorder so maybe it is best life did not move me in this direction. It sounds like where ever you do go for treatment that you don't have to tell them what to do, they already know what to do. You did not have an almost fatal learning curve for this, in other words. Maybe for me, my iga was low. I am not sure they even do the test where I am but I would have to ask. But since I am now flagged for gamma globulin that I am clearly allergic according to them, there is no way they are going to risk it for me anymore. Thank you so much for all the information that I will save.&lt;BR&gt;
    Best to you,&lt;BR&gt;
  19. ruti

    ruti Member

    Hi inprog&lt;BR&gt;
    The woman who had a stroke while getting igg iv - they stopped her getting iv's and she became sick.&lt;BR&gt;
    She is getting now the igg infusions back via under skin injections - it turned out that she has a tendency towrds &lt;BR&gt;
    This is safer since you don't get a large amount of proteins at once that can make the blood thicker - but once a week you get small amounts and it doesn't go directly into the blood stream - so it is safer - the problem here it is not approved in the national &quot;basket&quot; of medications and she has to pay for it.&lt;BR&gt;
    If you can get that it is probably safer for you,&lt;BR&gt;
    Do you have the values of your igg levels? &lt;BR&gt;
    To check iga (and igg) you can do the test &quot;Electroforesis of proteins&quot; - I might be wrong with the spelling.&lt;BR&gt;
    No great angels are directing me - I don't trust anyone - I learn everything myself - I got to get the iv's with the recommandation of Dr. DeMeirleir from Belgium that I visited to get a diagnosis. &lt;BR&gt;
    It is probably not an allergy for you, but the clotting problem.&lt;BR&gt;
    They should do it slowly and prefebaly do the injections instead.&lt;BR&gt;
    How are you doing? Do you have infections?&lt;BR&gt;
    I hope your health is improving&lt;BR&gt;

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