Evans syndrome????

Can anyone give me more info on Evans syndrome?????

Evan's is rare on this Forum, but there have been a few people with it. Hang in there and keep checking.

I'm new to this website, and really have no clue what I'm doing, but I wanted to comment because I have Evans Syndrome and Lupus. I've never found another person with Evans Syndrome, so I just wanted to reply and say that yes, we do exist. I'm 18 and I've been living with it for almost 2 years now, and I'm still no expert. Still, if you have specific questions, I will try to answer them.

To tell you a little about what it's been like for me, I'll say it's been a roller coaster. My counts fluctuate constantly. The worst I ever got was a hemoglobin of 2.8 and platelet count of 5. (Not 500, 5000. I mean 1,2,3,4,5.) I've been on prednisone, IvIG, cellcept, neurontin, and plaquenil, so I can probably answer some questions about those medications, too.

I also read your other post about your child's hemoglobin counts dropping, but I'll just comment here. When I was hospitalized, I had a hemoglobin of 4.6. After my treatment started, they actually dropped down to 2.8 before they went up again. I was on IvIG. It is possible, then, that her drop was just part of the treatment. It took me about a week before my counts started REALLY going up, and this goes for both hemoglobin and platelets. I'll also add that, at least for me, my platelets fluctuate more dramatically than my hemoglobin.

Dear Tinagbb64, Sorry to hear about your daughters' diagnosis. My son was diagnosed with Autoimmune Hemolytic Anemia and 8 months later Evans Syndrome back in 1988. He is 29 now and doing well; only 2 relapses in 15 years. Basically E.S. is the combination of ITP and AHA occurring simultaneously or separately. It is treated pretty much the same as ITP but is harder to manage with two different parts of the blood affected. Each case is different. I'd be happy to tell you what worked for my son and give you some general advice if you'd like. I am not computer wise. It took me an hour to type this and I can't figure out how to make paragraphs so please forgive me. Contact me if you want. Is there a way I can give you my EMail address without posting it here? Good luck, Karatemom

Hi kaitlyn...i was so excited to read your response.....sad for your diagnosis but hopeful for your input....thank you so much for responding.....you are 18 and my daughter is 14.....it has been so hard on her and you seem to have been going thru things that she is going thru back around the same time she actually started....she has been so up and down emotionally ....and of course emotionally....i wish you could talk to her some how....we are scheduled to see a new immunologist and a hemotologist on july 21st.....i am so desperately seeking any information i can grasp....all i have read online has mot been very encouraging....how are you doing right now.....how are you feeling......anything you would like to share would be so helpful...i hadnt checked anything on this site for the past days cause she was released from the hospital on saturday and i have been so crazy looking for info and then trying to get another opinion and finally got things rolling......thank you carinas mom...my name is tina....

Dear Karatemom.....thank you for your response...i thought i knew how to send you my email privately but i am still learning this site as well....but i thank you so much for your response.....i am so very interested in hearing from you ....i can hardly type fast enough.....i was so glad to hear your son was 29....i know that sounds strange but....thank God.....any information that you would be willing to share with me would be deeply appreciated and helpful....i havent checked this site for a few days because my daughter was released from the hospital on saturday....i will so look forward to hearing from you....thank you tina....carina's mom...

I'm glad you all found each other.

Thank you...me too

Sorry this is so long. Getting a diagnosis like that is really hard at such a young age. When I was first diagnosed, I was scared for a long time, because I wasn’t sure what it meant or how serious it was. It get easier to deal with over time, once you learn how the illness will affect you, and once you accept it. It seems scary at first, but the important thing is to try to move on with your life. The illness may be another roadblock in our lives, but everyone has SOME kind of obstacle, don’t they? We have to learn to work around it. I’ve been living with this for 2 years, I just graduated top of my class, and I’ll be going to college on a full scholarship – anything is possible. Life goes on, even in the face of adversity. This diagnosis doesn’t mean her world is ending, even though it feels that way at first. Even with this illness, your daughter’s future is ahead of her, even if it’s harder for her at times.

With autoimmune disorders, it seems that every person reacts differently to the illnesses and medications. My platelets haven’t really been able to stay up for more than a month, so I have to be more careful than usual. I try to avoid contact sports and stuff. I have to get my blood checked often – for a while it was twice weekly, then it went to weekly. I’m doing pretty well right now, so I only have to get it checked once a month, unless I start feeling weird and think I may be anemic or get petechiae (if she hasn’t experienced these yet, this is a rash-like thing you get when your platelets are low). The important thing with Evans Syndrome is to be cautious. It’s better safe than sorry. You should get her blood checked often, because especially with platelets, you don’t always realize how low they are until it becomes critical. Be mindful of bruising, a fast heartbeat, dizziness, or lightheadedness, because these can indicate anemia. Always get it checked out.

For me, the medication has worked wonders. It’s kept me from getting in a super critical condition for a long time now. I’m on a lot of immunosuppressants, though. Your daughter probably will be, too, at some point. The amount will depend on how her counts her at the time. You have to be careful with these, because it is SO easy to get sick. I have to go on home-bound a lot, wear masks in public when it gets bad, can’t go in crowds, etc. I’ll be perfectly honest – if your daughter takes these, she will be sick a LOT. I’m sick more often than I am well, but I’ve learned to deal with it. I’d rather have a stuffy nose than be dead. Just remember to carry hand sanitizer, wash your hands, and be careful to avoid sick people. Overall, though, the only real complaint I have is that I’m constantly tired, which I think is a side effect of the cellcept I am taking.

It really will just take time to see how these illnesses will affect your daughter, and which medication will work best, etc. There are a lot of different treatment options. You just have to be patient and be willing to keep trying treatments until you find one that works best without interfering too much with her everyday life. While Evans Syndrome isn’t curable, it’s manageable, and your daughter can live a normal life with it as long as she takes her medicine, watches her symptoms, and gets checked often.

Hi Kaitlyn....wow it sounds you have definitely had your share of ups and downs with this syndrome..but commend you on your courage and maturity in the whole situation.....my daughter has been having a very difficult time with the whole idea of being sick and the draws and IV's and well just everything....her reaction to steriods which has made her obessive about her weight....i tell her not to worry about it right now but in her eyes she can not see anything else......she has been sick since october 13 2010...so we are going to complete 8 months here soon....she was so disappointed when they told her that now her red blood cells had a virus attached to them....she was like whats next mom...and the doctors say she just has to wait and see when her body will respond to the treatments...she hasnt seen the rheumatologist yet but will next month....we are actually going to change doctors....i just feel we need to know more....and this site has given me more answers then the doctors...sad but true.....i mean it is tuff to have your life turned upside down....as you well know....but you have really learn to deal with it and are definitely a positive influence on all the people who are looking at this very similar path.....i wanted to aske you without embarrassing you i hope.....did your menstrual cycle affect your counts because the doctors keep telling us that it has nothing to do with the counts but when that time comes around she just bleeds like there is no tomorrow....it is scary.....kaitlyn thank you so much for sharing your story with me .....i want my daughter to read your response....if you have any more you would like to share please please feel free.....may God bless you and keep you moving in the right direction....thank you...

Hi Tina, Diagnosis story is a good place to start. My daughter and then my son had the flu; fever headache, Feb. 1989. My son Matt who was 7 at the time got better for a few days and then started running a mild fever, lying down a lot and coughing. He took Amoxicillin for 10 days. When I took him back to the Doc for a second time they took blood. His Hgb was 6.8. They sent him to the local hospital to recheck the results and then to the hematologist at a medical center an hour away. They did a bone marrow biopsy, took a lot more blood and put him on 180 mg of Prednisone a day. They had no beds and I am a nurse so they let him go home. Tests were positive for coombs positive hemolytic anemia. They also found he had enlarged lymph nodes and spleen. Matt took everything like a trouper. The only time he complained was when I took the bandaids off. They tapered the Pred. over 3 weeks then stopped it. We figured it was post viral reaction. Two days later he got chicken pox. Thats a story for another time. Needless to say he relapsed. Now they figure he relapsed from the chicken pox. But as those of you who are going through this know it is never that easy. He relapsed 3 more times after stopping Pred. and then his Platelets dropped to 17 k. I have to go for now but will post more soon. Joan

Hi Tina--

Yes, there is such a thing as too much menstruating!

My daughter was diagnosed with ITP when she had a non-stop menstrual cycle. We went to a gyn office, she was seen by a nurse practitioner who sent her for bloodwork. They took about 6 tubes, and afterward, she was so weak I had to support her when we got to the parking lot. We went directly from there to her pediatrician (she was 14 y. o.), who took another tube and found she had platelets around 2K. From there, she went across the street to the hospital, where she was admitted and stayed for the next five days. She was given two units of whole blood, Premarin (to try to stop the menstruating), two units of IVIg, and finally, gyn surgery to stop the bleeding. I think she also may have had IV steroids in there somewhere. It was all such a blur, but I think the surgery was on day 3, after the IVIG was not very good at raising her counts (maybe 40K). She was released two days later at about the same count after successful surgery.

How much is bleeding is too much, and how long is too long? For Caitlin, she had had a long cycle the month before but got worried the second month when she was soaking a super and pad within an hour for five days. I mentioned the gyn on day 5, but she wouldn't agree to see someone until day 7.

It was a very scary intro to ITP. The only thing I could think of was that it was related to a high fever (103) she had had for less than 24-hours two months before. It was Caitlin who found this site, and it was here we learned so much.

She had not responded well to the IVIg, so after she was discharges and started with weekly CBC's, they tried WinRho/Rhogam. Again, she reached about 40K, but only for a week. After she had a bone marrow aspiration (family Hx of multiple sclerosis), she started on Dex pulses. She started eating like the whole football team and the weight gain was immediate. She weighed 95 pounds when she was discharged, and at 5'3" or so, she could afford a few pounds-but put on about 30, within a month or two! And that was while she was participating daily and competing weekly on swim team, and riding horses two to three times a week when her counts were over 50K.

It was a yo-yo existence. For about 2-3 weeks after a pulse, she could do active things, and then 2-3 weeks of not participating. She was afraid to return to monthly cycles, so they put her on the Pill, skipping placebo pills. She went to having a cycle every six months, which helped with some of the scary stuff. She took iron pills for a few months. However, after about 9 months, she was displaying side-effects from the Dex she/we could no longer ignore or downplay. She was already slight-framed, didn't need osteopenia due to steroid use. She also has a strong vision prescription-steroids can lead to vision problems like cataracts. Her BP was elevated after the steroids, and she was having hot flashes just sitting still. No wonder she had headaches! We had to find something different--and we did: Rituxan.

Search other posts I have written in the past month or so--I update often on the remission Caitlin has enjoyed since she received it. But I wanted you to know that you are a wise woman to keep an eye on your daughter's cycle! And there is such a thing as just too much bleeding-ask her to report excessive clots or protection pad/tampon changes that last less than an hour! Hope this helps...Ann, Caitlin's (24) Mom

The first thing you should discuss with your doctor is trying to find alternative medications to steroids, though, because they have really bad effects on your bones and stuff. I was on them for a while after I was diagnosed, and I still go on them in emergency situations, but my daily medication has been switched to cellcept, which really has worked wonders. It has kept my blood more stable than the prednisone ever did, and it has so fewer side effects that I’ve noticed. It is a powerful immunosuppressant, though. You’ll really just have to talk to your daughter and doctor to see which treatment options are the best fit for her, because everyone is different.

Also, it wasn’t so much that my menstrual cycle affected my counts, but that my counts affected my menstrual cycle. The doctors blame it on my low platelets and my inability to clot properly. When I have my period, I bleed like crazy. I bled for a month straight once and wound up in the PICU for anemia, because I was essentially bleeding to death. I had to get a bunch of transfusions, and it was pretty scary. Menstrual cycles always cause a lot of blood loss for all women, which causes lower hemoglobin at that time. With people like us, I guess the Evans makes it a lot worse. What worked for me was going on birth control. I know a lot of people don’t like taking that route, but I really feel like it was necessary for my safety. With the pills I was able to control the bleeding because I could control my period. After I went on the pill, my hemoglobin counts improved SO much, and became much more stable. It’s something you should consider if the bleeding becomes a serious problem for her.

Thank you for the kind words, and I hope that what I’ve said has helped you and your daughter in some way during this rough time. If you or your daughter ever have specific questions or concerns, I would love you try and help you answer them. After all, what’s the point in going through all of this if I can’t even help other people going through the same thing?

(This was supposed to go BEFORE my other post, but something weird happened, so sorry, haha.)

Yeah, for me, the idea of being sick was one of the hardest parts, too. The thing is, though, the faster you can accept the illness, the faster you can move on from it. For a long time I wished and prayed that I would just wake up and be healthy again, but that just isn’t how life works. It is a lifelong illness, and it’s better to accept that early and plan how you are going to work around it. The good news is that Evans Syndrome is one of those things that, for a lot of people, can go into a really long remission.

I completely understand her concern about the weight gain. As a teenage girl, that sort of stuff seems so much more important than it really is. The majority of weight gain with steroids is actually water retention, though. If steroids are going to have to be a long term medication, though, it doesn’t necessarily mean she is going to gain weight. I didn’t gain any when I was on them – I actually lost 15 pounds. The problem with steroids isn’t that they make you gain weight – it’s that they can increase your appetite and then they cause fat redistribution, making fat congregate in the stomach area. As long as she watches what she eats, she can really reduce the weight gain. Watching caloric intake and exercise are really the key if she’s worried about the side effects. There isn’t much you can do for the swelling, though. My face swelled when I was on them, so I just learned some makeup tricks, like applying a darker blush and wearing my hair down and curling it around my face and growing it longer, or doing something dramatic with my eyes to draw the attention away from my cheeks. Steroids usually aren’t a lifelong medication, and once she’s off them, the swelling goes down pretty quickly. At the end of the day, her health is more important than her appearance, but as a teenager, I get that that isn’t something that’s easy to accept. It wasn’t for me, either.

Hi Kaitlyn,
I figured it out...thank you so much for all your info...wow...you and your mom have really answered alot of questions from both perspectives as a mom and for my daughter....in helping to try and cope with this crazy illness...i want my daughter to read your letter kaitlyn and truly believe it will help her open her mind and give her the maturity and the wisdom to look at the bigger picture and for sure to except and move forward.....she has been great....dont get me wrong....in the very beginning i felt so guilty because i didnt believe some of the things she would complain about only because her and i were kinda going thru a head butting stage and i thought she was trying to get my attention but from another angle....i have 7 children by the way and of the 7 carina is number 6 and so therefore a baby came along like 7 years after she was born and she has had issues with that whole "not being the youngest" anymore....so she fights a little harder...argues a little more....throws her temper tantrums a little longer and so on and so on....but anyway....so when they told me what was going on with her body i held this guilt for the longest time...thinking if i would have just listened to her and so on....but i realize that ...that is not the case...it was out of my control but God slowed our lives down and we had no other choice but to redo our whole relationship....and that i am thankful for....and now here we are and i am so grateful to this site to allow people from all areas of the states to come together and share the experience making it some how a little easier to deal with...God has now made everyone in this site a vessel of information...strength....power and love....and that gives me hope for the future with all that is yet to come still....now i have another question...did your doctor suggest going to the gyn....was it something that he/she suggested to do as a part of the plan of care for you.....or how exactly did you come to that dission...i would like to go ahead get that rolling because i know without a shadow of a doubt that this illness is going to continue to affect her more and more especially since now it is becoming more clear as to how her body is reacting to this syndrome.....but again....thank you and your mom for sharing your experience with me and my daughter....you both are truly a blessing to me....tina

Sorry for the late reply. Seeing a gynecologist was my doctor's idea. They actually found the doctor they wanted me to see and everything, because they saw that my period was going to be serious problem considering the Evans Syndrome.

I would be interested in hearing what worked for your son. My 10 year old was diagnosed a little over a year ago.

My son has been diagnosed with Evan's syndrome as well. His platelets and white blood count are what is effected. He has been doing well with minimal treatment. When his platelets are below 16,000, he has received a 4 day pulse of prednisone. Currently it has been 9 weeks since last round of steroids and he is holding steady around 40,000-80,000 on his own. His white counts were pretty low during his last cbc, but we seem to be able to keep him healthy by a healthy diet, some supplements, good sleep habits and also homeopathy support. I feel blessed at the fact that he feels great and his life is only disrupted for Dr.'s appointments and he has to watch contact sports, etc.. when his platelets are low. It is great to connect with others on this journey.

how long has it been since he was diagnosed with Evans syndrome....its awesome that you found a regimen that seems to work for him...what type of homepathy support are you using...did you see a homeopathic doc or did you research on your own....thank you for responding and yes this site is a true blessing...tina

Our journey with my son began in Jan of 2010 when he had a sinus infection that wouldn't go away and then I noticed bruising in February. After a hospital stay and tests to rule of leukemia, we were sent home thinking it was a viral thing that were causing his counts to go down. Well, they bottomed out in April and he got his diagnosis. He had one IVIG treatment with little results, but seems to respond best with 4 day pulse's of prednisone. He had about 6 months last year where he was stable without steroids and bottomed out again in December after a cold. The prednisone tends to last 4-6 weeks, but we are currently at 10 weeks without steroids again, so I am hoping he is stable again for a long time! We have a homeopath that we consult with every month who provides support remedies and we are also going through a slow detox from past medicines and vaccines that I believe were damaging to his system. ( I know that some don't agree with that, but I have another child on the autism spectrum and have heard too many 1st hand stories to not believe that vaccines have something to do with all the autism, autoimmune diseases, asthma, Add/ADHD, etc.. that has been on the rise.) Again, I am thankful that his steroid treatment has been minimal and that we have been able to keep him "healthy" and active since diagnosis.

I think few people disagree with the vaccine theory. ITP is a documented side effect of the MMR, and I don't think it's unreasonable to assume it could be for other vaccines too. I refuse them for myself, and would hate to have to make that decision for my child (mine are grown - decisions done).

Sandi- do you know where I can find that documented side effect info on the MMR?

I'm an adult with Evans Syndrome. We have a rather large support group going on Facebook . Our blog is located here . We are also in the process of bringing our main website back up (we were down because we got hacked), and when it's out there, you'll be able to hit us here . We are the Evans Syndrome Community Network. We consist of people all ages, from all over the world. If you need help, want to ask questions, or just want to lurk, feel free to join us.

~Peace~