Discussion in 'Fibromyalgia Main Forum' started by joyinga, Aug 2, 2006.

  1. joyinga

    joyinga New Member

    Hey Thistledown,

    I noticed in your post about the RH negative and the rhogam shot something that i'd like to ask you and see what your opinion is ..... anyone else may also give their opinions or comments as well... this is in response to the reply about Sandy's question on who else was RH negative and had fibromyalgia...

    You said that the reason RH negative women were given the rhogam was to trick the body into making the antibodies in order to keep from rejecting a fetus from their bodies in future pregnancies.. I understand that but can it be possible to get too much Rhogam injected and essentially cause harm to the mothers body as well?? I have several autoimmune disorders that i got 2 WEEKS after i gave birth which include psoriatic arthritis and another form of arhtritis called ankylosing spondylitis(both types of arthritis which are the autoimmune attacking kind and not the wear and tear kind), SEVERE vaginal psoriasis, was diagnosed with fibromyalgia about 4 yrs ago and am now being considered for lupus along with some other autoimmune disorders (yippeee- NOT-as if i didn't have enough already!!) ...What i was wondering was if i could have been given too much Rhogam and maybe it mounted an attack against my own system as well since really what autoimmune disorders are are essentially your own antibodies attacking your own body??? is that possible? Have you read any studies or seen anything about maybe someone having a reaction like that to Rhogam?? Also, I did have my shots in 1990 so that means that i received the "old blood plasma" donor instead of the new "non-plasma" shot?? So, i very well could have contracted some sort of bacteria due to those shots?? (and then my odds of receiving a bacteria or some other thing are 3 times greater since i receieved it 3 times during that pregnancy??)

    I'm definately not saying that i have fibromyalgia due to those shots and I'm NOT saying that RH negative women should not have those to prevent birth defects or miscarriages in future pregnancies. I do know that I have been sick ever since 2 weeks after i gave birth and havent gotten better but worse since then. I believe that maybe some of my autoimmune disorders could be caused by the Rhogam shots because of the time frame that i started having symptoms and I know that having the stress of the disorders could very well have caused my Fibromyalgia to have reared its ugly head 4 yrs ago...although that was the year i was officially diagnosed but felt that i had fibro for many years before... although not right after i had given birth unlike the other autoimmune disorders...(LOL-DID THAT MAKE ANY SENSE?????) So, if you can understand what i'm trying to ask and can possible give me your opinion or suggestions on that i would greatly appreciate it....

    I have had some bloodwork and have the tests that i was tested for and results and would like to send you those tests to see what your thoughts are on those tests/results too because i have questions about them that i have not had answered yet...(technical questions about the things i was tested for) since that is what your profession is you should know the answers to the questions i would like to ask..if you don't mind giving me your professional opinion.. I would have to post that in another message because i've moved and don't know where they are at the moment!!

    SOOOO, to end what i'm trying to say is that i don't think i have fibromyalgia because i am rh negative and because i have had the rhogam shots but i do believe that the other autoimmune disorders have something to do with the Rhogam shots and my O negative blood type and that the stress of all those disorders for all these years may have caused the fibromyalgia to be present when maybe it would not have if my own body wasn't in such an attack mode against itself to begin with....hope that makes

    Thanks and hope to hear from ANYONE with opinions or comments,

    Take care,
    [This Message was Edited on 08/02/2006]


  3. lenasvn

    lenasvn New Member


    RhoGAM is a medical treatment that has nearly eliminated the risk of jaundice, hypotonia, and motormental retardation from Rh incompatibility between a mother and fetus. Rh incompatibility occurs when a woman without the Rh factor (a protein found on the red blood cells of most people), conceives a child who has the Rh factor. The mother's Rh negative blood will react against the Rh positive blood of her fetus and attack it with antibodies.

    The RhoGAM injection halts the mother's immune system from responding to the Rh positive blood of her child as a foreign threat and attacking it with antibodies. RhoGAM is a preventive drug and in its current form offers huge benefits with very minor side effects.

    Concerns about RhoGAM
    The concern over RhoGAM is based on the fact that in its earlier form it contained thimerosal. Between1968 (when RhoGAM was first licensed) and April of 2001, RhoGAM contained the thimerosal preservative. Thimerosal contains ethylmercury and because methylmercury (another mercury based composition) has been found to cause severe health problems, ethylmercury is also being scrutinized. Both compositions are known to be neurotoxins. To date, no conclusive evidence has been found linking ethylmercury to neurodevelopmental disorders, but the FDA has treated thimerosal with caution.

    A RhoGAM Attorney
    If you believe that you or a loved one has been harmed by RhoGAM, you may want to contact a RhoGAM attorney for more information.
  4. lenasvn

    lenasvn New Member

    By the way, your profile is empty, so I could not determine your age, how long you've been sick, etc. It would be nice to see your profile sometime in the near future!
  5. joyinga

    joyinga New Member

    Sorry I didn't have a profile filled out...I will certainly fill my profile out!! But for now here is my history:

    I'm 34 and have been suffering from these disorders since I was 18 only 2 weeks after having my only son. This was 16 years ago for me so for the last 16 yrs I have suffered from SEVERE psoriasis and severe arthritis to the point that now my joints are VERY deformed (knotty, gnarled looking). I developed fibromyalgia about 3/4 years ago but feel that I have had it for far longer than that because my symptoms have been with me for a loooon time. Though it is kinda hard to tell what is arthritis pain from fibro pain because of the severity of my arthritis pain in all my joints. I just feel like crap all the time. I am tired, achy, in a great deal of pain and feel like i always have the flu. But since I was 18 I have felt this way but it has worsened over the years so that is why I think I developed the fibro..or that it "came out" due to the stress of the other illnesses on my body. I just read somewhere on a website that an adverse side effect to the Rhogam shot could be psoriasis and arthritis. I have always felt in my heart that the Rhogam shots were the reason I have been so sick for so long and the reason I got psoriasis and arthritis to begin with. I don't know why i've always had that "intuition" but at 18 yrs old I didn't know how to go about researching it and finding out. At that age I was not even mature enough to know my own body really..... so now at age 34 after 16 years of suffering and now basically disabled I want to know why and how!!!!! At age 34 I should be in my prime and feeling great about my body and life but I cant because I no longer have a life... I can't work or barely take care of myself any longer! Not that it would make a difference in my quality of life but it would be a comfort to know there was a reason I have this somehow...if that makes sense.

    Anyways, I hope that more ppl can reply with a comment or opinion and I really hope Thistledown can give me her professional opinion and if she knows how to go about figuring out what tests I might need to run to rule out other diseases that I might have due to the "bacteria" that I could have contracted since I receieved 3 seperate shots in 1990 (one shot after an amniocentesis procedure while I was pregnant, another shot at a certain number of weeks during my pregnancy and a final shot a day after I delivered my son).....or if anyone has any idea what other tests I could screen for I would greatly appreciate it..... I will get my other previous blood tests and post those results to see if anyone has any opinion or comments on them as well....I know that i've not had alot of tests done and that there are alot more that I should be tested for to see if it is in my blood/body that could be the reason i'm in the shape i'm in today!!

    Anyways, thanks for the reply and I will fill out my profile as soon as possible.. hope to hear from you again or anyone else for that matter!! lol

    Take care,
    Joy (I live in georgia by the way!)

    P.S. I have a twin brother and none of my other family members have any of the disorders/diseases that I suffer from.... my mom does have the usual diseases like diabetes, high cholesterol(sp?), and a few others that go along with normal older I don't think in my case my conditions are from genetic or hereditary since noone else in my family has what I currently suffer from.

    [This Message was Edited on 08/03/2006]
  6. sandyL

    sandyL New Member

    Joy Im glad you brought up this aspect of it. I met a lady with autoimmune thyroid disease on a fibromyalgia board on aol in 2002, she was wondering if there was connection between rh negative and her problems. She got me inquiring and I have been asking the questions you have for 4 years now. As I posted in the other forum, I have been dx with glomerulonephritis, and my doctor is waiting until I produce proteins before he will give me a biopsy. He suspects that I have IGA nephropathy. Which is an overload of Iga antibodies.. I found this warning about rhogam, and I like you wonder if it could have started a chain reaction like occurance, leading to an autoimmune disease and I too, wonder if there is any research to connect , autoimmune diseases and Rhogam.

    Important Safety Information:
    RhoGAM® and MIC RhoGAM® Ultra-Filtered are made from human plasma. Because these products are made from human blood, they may carry a risk of transmitting infectious diseases (i.e. viruses) and theoretically the Creutzfeldt-Jakob disease (CJD) agent. RhoGAM® and MICRhoGAM® are intended for maternal administration. Do not inject the newborn infant. Local adverse reactions may include redness, swelling, and mild pain at the site of injection and a small number of patients have noted a slight elevation in temperature. Patients should be observed for at least 20 minutes after administration. Hypersensitivity reactions include hives, generalized urticaria, tightness of the chest, wheezing, hypertension and anaphylaxis. RhoGAM® and MICRhoGAM® contain a small quantity of IgA and physicians must weigh and benefit against the potential risks of hypersensitivity reactions. Patients who receive RhoGAM® or MICRhoGAM® for Rh-incompatible transfusion should be monitored by clinical and laboratory means due to the risk of a hemolytic reaction.Learn more about RhoGAM® Ultra-Filtered products.

  7. joyinga

    joyinga New Member

    Well I tell ya......we are gonna get to the bottom of this eventually I I guess we should start writing letters to the Rhogham manufacturer and start pushing for some more research or something to help us out. Or writing to the FDA to see if they are studying this sort of thing or if they think there could be a connection. Evidently somehow it does otherwise there wouldn't be "Rhogam Lawyers " as the post that levsyn posted in her reply!!!! Because I have had the same "intuition" since I was 18 when I received those shots that somehow my health problems were related somehow!!

    I will tell you this...if/when I do come across research/articles that show an association between the shots and some of my health problems I am going to save them all in a file and show them to my doctor and see if he can get the ball rolling on helping me figure out some of this stuff... I will also post what I find on here as well if anyone is interested in the research/articles I find!! And if you want to do the same I would greatly appreciate any help!! or anyone else for that matter!!

    Will continue to be in touch with you and anyone else that is interested!!

    Take care,
  8. crisleem

    crisleem New Member

    That sure is interesting. I have certainly felt much worse since having children and I have had the shot three times.
    But I still think it is because children are stressful and stress triggers pain and fatigue.
  9. joyinga

    joyinga New Member

    Please keep bumped for others to see easily and respond!!!

    THANK YOU!!!!

  10. joyinga

    joyinga New Member


  11. tonakay

    tonakay New Member

    Now this is interesting. I had my first one at 18, then 21 and last one at 33. Hadn't thought about those cards I carried for years. I'll be checking back on this thread....

  12. sandyL

    sandyL New Member

  13. joyinga

    joyinga New Member

    Hey everyone:

    Just bumping again in hopes that Thistledown or anyone else that reads this can give their opinions or comments.... Please help to keep this bumped even if you don't have a response PLEASE so that others can see easily without having to go back so many pages!!!

    This message board moves VERY FAST!! LOL-I can barely keep up with it! I'm STILL not used to it moving so fast YET!! and i've been reading this board (excellent board by the way!) for over 3 months now! Don't know if I will EVER be used to it moving so fast!!!!!!! Although i'm sure I will eventually!! (maybe,hopefully-lol!)

    Thank you so much!!!

    Take care!!
    Joy in Georgia
  14. STrange hubby and I both have rh negative blood.Both are sick.Wonder how many others are rh negative?
  15. Thistledown

    Thistledown New Member

    First, let me clear up a few things and maybe enlighten folks a little further...I will try not to get too technical, but if you wish to have more information, I will oblige.

    1)Rhogam is the Rh antibody, purified from human plasma. Yes, it caries the risk of infectious disease, but the risk is EXTREMELY low. Rhogam PREVENTS the mother's body from learning how to make the antibody by providing a decoy. In other words, the antibody in the shot acts like the real thing, and the mother's body doesn't bother to make any for itself.

    2) An Rh negative woman is only given one dose at 28 weeks gestation and one dose within 72 hours after delivery (to keep her body from responding to baby's blood that may heve entered her bloodstrem when the placenta detached). One dose is just enough antibody to protect against a 15mL bleed (3 teaspoons of baby blood). There are tests that we perfom to see if there is baby's blood in the mother's bloodstream, and we can identify how much. If there is more than 15mL, more Rhogam is given to counteract the amount.

    3) I cannot speak for the preservative mentioned (Thimerosal), but it is the same on that was used for decades in vaccines. If you suspect it is the cause for you FM/CFS, then blame all the vaccines you ever had. It just may be a factor, but it is not exclusive to Rhogam.

    4) Psoriasis and Ankylosing spondylitis have been correlated with HLA-B27 (Human Leukocyte Antigen). HLA's are on the surface of White Blood Cells (WBCs) and they are genetic. People who have the gene for HLA- B27 are at higher risk for allergies and autoimmune disorders.

    Feel free to ask whatever you wish, and I will answer to the best of my ability. I have extensive training in the biological/clinical sciences, but I am in no way a replacement for a physician or other medical doctor. I just want to provide information to help. Best wishes to you all!
  16. joyinga

    joyinga New Member

    Thanks so much for responding.......Its ok that it took you awhile to get back with me. I am in no way asking you to give me medical advice or replace my doctor--just wanting to ask your opinion about certain things that maybe you have more knowledge of from someone else that doesn't.

    I did have the HLA-B27 test and it did come back positive. I had that test taken about 4 yrs ago along with some other tests like Mono, Eptein Barr virus (says that it shows i had those viruses in the past?? Can you explain how they determine that?) and some other things. I'm going to find all the blood tests that i had done in the past and post them so you can give me your opinion on them if you don't mind. I'm just trying to figure this thing out and try to see if there is a connection somehow. I still have in my heart that the Rhogham maybe triggered something in me to have all my problems. I don't know.....

    Do you think that there could be an allergic reaction to the Rhogham shot?? Could your body "think" the Rhogam shots were something foreign and suddenly produce the antibodies to fight off that shot and it just turned against my own body that way?? since i received it 3 times during the time i had my child do you think maybe i was given it too many times???(i guess not since after birth it can be given again depending on the amount of trace blood in your system from your baby?)

    If you don't mind i'll be back to post again to talk about some of my blood tests and what they showed up. I'm not looking for you to replace my doctors...just wanting to get another personal opinion from someone who works in your profession!!

    Thanks so much for your reply and i really do hope we can continue to chat about this...just want to talk with someone who has the knowledge in order to discuss more things in detail.....

    Take care,


    P.S. If you know, how would i go about getting blood test results from 16 yrs ago? I remember that after about a month or maybe even a few months after i had my son and my sypmtoms were really bad with my joints and psoriasis i went to a doctor an hour from my hometown of bainbridge, georgia(i live in a rural area and the better doctors are located in a bigger City an hour away in Albany, Georgia). Anyways, i cannot remember for the life of me the name of that doctor that ordered alot of bloodwork at that time and I do remember sitting down with him and discussing some of my bloodwork at that time but i'm curious what blood tests he did... i do remember him saying that some of my vitamins/minerals and such showed ok and some didnt but not about the other things he tested for and discussed..(I think i was just still so out of it from just having a baby, my father had died about 3 weeks prior to giving birth and i was newly married and didn't know what i was doing at 18!! i was still so immature and had to grow up basically overnite-LOL). But i want to get those blood tests and results but how would i go about finding them now after 16 yrs and not remembering the ordering doctors name or remembering the office he was located at?? maybe it has some things on it that might be beneficial for me to know now. I know that i did them at a doctors office cause he took blood there and did x-rays as well at the office but i cannot remember his name or office address for the life of me.(only that i know it was in Albany, Georgia) this was 16 yrs ago).... There are 2 hospitals in Albany-would they have records of such maybe at one of those hospitals? if not would you know where i could get information on how to locate those blood test results and/or records ???? SORRY....IT WAS SO LONG AGO-I KNOW THAT I SHOULD PROBABLY KNOW BUT I WASN'T VERY RESPONSIBLE AT 18 AND DIDN'T THINK I WOULD HAVE TO REMEMBER AT THIS POINT IN MY LIFE BUT I AM SOOO CURIOUS WHAT THE TESTS WERE AND THE RESULTS WERE SINCE IT WAS SOOO SOON AFTER I HAD ALL THOSE SYMPTOMS AND PROBLEMS AFTER I HAD MY SON (16 YRS AGO)

    Thanks alot to ANYONE that can help with this question!!

    Joy[This Message was Edited on 08/11/2006]
  17. joyinga

    joyinga New Member

    Sorry to keep bothering people by keeping this bumped....just want to keep it in easy view for others to see and respond hopefully!! Thanks a bunch!!

    Take care!

  18. joyinga

    joyinga New Member


  19. sandyL

    sandyL New Member

    Hi Thistledown.

    I have a question? since a lot of rh negative woman dont know their blood type until they become pregant,

    Why isnt Rh negative , Rh imcompatiblity taught in health, biology, or sex ed in Schools in junior high, and or high school, or is it? It seems rh negative women should be educated about the risks,pros and cons, even in a perfect world, choosing an rh negative mate.
    what do you think?

    thanks Sandy
  20. sandyL

    sandyL New Member

    Hi Joy I was reading this and thought of the autoimmune connection.

    Likewise, fetal blood can pass into a mother's system. This fact has led some researchers to suggest that the significantly higher frequency of autoimmune disorders in women is a result of the presence of foreign white blood cells that had come from their unborn children during pregnancy.

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