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Lupus and Anemia...Does anyone have both?

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Posted 1/3/2007 5:48 PM (GMT 0)
I was wondering if anyone else had anemia with their Lupus? Do you know the cause of your anemia? If you're iron-deficient, do you know the cause? What treatment does your doctor prescribe? Thank you all for the information :-)
Posted 1/3/2007 8:01 PM (GMT 0)
peaceful harpist, while my regular dr. is saying I hav lupus I havn't seen my rhummy yet. all test have so far come back as lupus with possible sceraderma. I received my blood test back from two different dr. that said I am anemic. Low red blood cells low hemoglobin and low hemacrit. she sent me the results in the mail and all it said was lupus can cause anemia. At this point nothing else has been addressed about it. I know that's not much help but she did say that lupus and anemia do go together.

Hope someone else has better answers for you

hugs
Posted 1/3/2007 8:22 PM (GMT 0)
Wow, I learn something new here every day. My last bloodwork showed that I was mildly anemic. The only other time I'd ever been anemic was when I was pregnant with my second child.

It was something I'd totally forgotten until I read this post. I guess I should start taking my multivitamins w/iron again. The rheumy didn't actually address the anemia, but I will be sure to ask her about it when I go back next month.

Good luck!  Seems like this disease presents something new all the time...

Kari

Posted 1/4/2007 12:03 AM (GMT 0)
PH,

Anemia is common with lupus.  I have it and that along with low platelets (thrombocytopenia) are two symptoms I had for 14 years before my first flare.  Treatment varies and it might not just be an iron deficiency but the underlying disease which is causing the premature destruction of cells.  Here is a brief explanation of those conditions which are interrelated.

http://www.lupus.org/education/brochures/blood04.html#anemia

In my case, treatment of the underlying disease eventually corrected both my anemia and low platelets (they could be higher but are close to or in a normal range).

The lupus site www.lupus.org or www.emedicine.com are both good sites to find information.  If you google the subject you will find much on the subject although some sites will be restricted and if you do not register you might only get an abstract and not the whole article.

If you have not seen a rheumatologist you should see one experienced with lupus.  Lupus is the disease with a 1000 faces and hits everyone differently.  Like other AI diseases it can be very difficult to diagnose and tests can be negative when you have the disease.  In my case, I have lupus as part of mixed connective tissue disease which is much rarer and even more complex.  It is the combination of lupus, scleroderma and polymyositis.  LUpus hit my kidneys (proteinuria), joints, GI tract, and affected my memory and cognitive abilities.  PM hit me the worst and took 40 lbs of muscle mass in a week, caused auto immune induced hepatitis and left me a quadriplegic and near death.  Scleroderma affected my GI tract to some degree but was the least problem.

The good news is that I am fully functional now and have responded to meds exceptionally well.  I only tell my story to give people hope and also to illustrate how unpredictable AI diseases can be.  If you area has a local support group I suggest that you contact them and attend their meetings.  It is well worth the effort as you will find a sympathetic and knowledgeable community of people with similar problems.  They will have suggestions and answers for many of your questions just as people on this forum will.

Good luck,

Bill

 

Posted 1/4/2007 2:07 AM (GMT 0)
Hi Carol, Kari and Bill, Thank you for your posts and sharing info. Bill, you are a miracle. I'm so glad that you told your story....you have given me and others hope. It is a disease of a thousand facets...you never know how it will present itself. It is a disease which effects everyone differently. I have been to six rheumies within my area of about 2 1/2 hours. None of them are lupus specialists. I would have to travel about 4 1/1 hours to see a lupus specialist. I too have been diagnosed with mixed connective tissue disease, Raynauds, RA both SLE and sub-cutaneous lupus. I've had my gall bladder removed and my GI tract is involved too. I have had so many endoscopies, colonoscopie and even the new camera pill endoscopy. My uterus was eblated. Lupus has effected my nervous system, memory and cognitive ability. I get pluerisy regularly and have asthma. I am very sun sensitive. I have high blood pressure. I had a mis-carriage 10 yrs. ago(one of the 11 lupus criteria) and our son was born 1 1/2 yrs. later with autism. There are studies being done now to see if there is a link between autistic children and lupus parents. I am a miracle too. I survived a major medical crisis when I was hospitalized with a DVT on my left side that went from my mid-calf to my waist. At the same time my RBC was 6.5 and had a serious urinary tract infection. My condition was so serious that I couldn't be moved for 4 days. The doctors said I had the largest DVT they had ever seen and were puzzeled by my severe anemia. They wanted to life flight me to another hospital but I was too unstable and too likely to have a pulmonary embolism. I did well with heprin, antibiotics and transfusions. We live in a small town that is very isolated. I have to travel a distance to get transfusions and iron-dextran i.v. infusions. I have had smaller crisis with low RBC and have had to change hemo/oncol. I have already been dx MDS (blood cancer). I travel 2 1/2 hrs. now. At the moment I'm waiting on the results of another bone marrow biopsy and cytogenetic tests that were done. My phone calls are not being answered. Meanwhile, my new hemo/oncol. left this hospital and another doctor has taken his patients. I don't have an appointment with him for another 2 1/2 weeks. I was recently dx with a herniated disc and disintigrated disc in my lower back. My upper back where I had a discectomy w/ graft, fusion and titiniam plate is giving me grief. I now see a pain management doctor and have started physical therapy and neurontin. It is helping but I'm tired.

I'm in a flare from stress and a recent iron-dextran infusion. All of the traveling is tough on me. My youngest son, who is autistic, is going through a developemental crisis now. I feel guilty that I can't give him all the quality time he needs from me right now. My husband has been giving him the support he needs at home and the school is helping. My husband looks so exhausted and stressed. He does most of the house things too.

Bill, those were good sources you sited, and I ear-marked webMD. It's so difficult to find information on the topic I'm looking for, and like you, I only get abstracts. I wish I had a local support group but our town is so small. Again, I would have to travel. This forum has been a blessing for me. Thank you so much again for sharing your story and information. I don't talk about my illness. Ever. My message is never give up or give into lupus...no matter how tough it gets...if you're not getting the medical attention and information you need....keep looking, you'll find it eventually...and keep fighting the lupus. Thank you all for listening. ((((prayers and gentle hugs)))) Cecelia
Posted 1/4/2007 3:42 AM (GMT 0)
Cecelia,

You have been through hell.  Not sure where you live in PA but finding good doctors in an urban area like Chicago can be challenging but I have been lucky....it saved my life.  I would not have survived past Dec 2005 without great care. 

My wife and I always wanted to move to the mountains in the west and since I have been sick we realize how lucky we are to be in chicago (none of my beloved mountains or desert) but some of the best medical care in the world.  We will probably stay the rest of our lives so I can get care if needed. 

Do you have insurance that would allow you to go to a clinic to get a thorough analysis and treatment?  With so many conditions doctors can get in each others way.  I had a large team of docs, including 3 rheumys, who all worked together to diagnose and treat me.  Now that I am better there are 4 docs who oversee my diseases and resulting conditions which I have not completely listed.  I considered going to Mayos in Rochester, MN but got the care I needed here fortunately.

Keep pushing to find a doctor who can treat you and bring in any specialists needed.

So sorrry you are having such a difficult time...particularly with a family.  Our "kids" are all middle aged men now so they have been asset in helping us through this crisis.

Keep on fighting your diseases.  I do talk about my problems but always with a purpose to inform and help others.  Otherwise, it is just another speed bump in my life and I will not let it stop me from living or returning to the activities I love.  Maybe I won't get there but until I am sure of that I will stubbornly believe I can.  11 months ago the docs were not sure I would survive.  I did.  12 months ago they were not sure I would walk or use my arms again.  I did.  Then they were not sure I would fully recover.  I have not yet but I am so far ahead of any goal they would have set.   Whatever the outcome my life is much better for not giving in to my early despair.  Keep on trying.

I still want to return to skiing, climbing and golf in the 70s even though I have been sick and am 64.  So far, I have only been able to climb part of a small mountain in MA.  Might not seem like much but from fully quad to that in 10 months gives me much hope.

Sorry for rambling but I get somewhat emotional about things and trying to help others.

Bill

Posted 1/4/2007 4:29 AM (GMT 0)

Peaceful,

   You have been through so much. I'm sorry your not near a good lupus specialist. I know it is hard to drive so far to see a good doctor. It sounds like you have your plate full with your health problems and your son...((hugs)). I'm so glad your hubby is there to help you through this.

   I hope you can find some much needed relief in the near future. Take care and know that you are here for you when you need us. Keep resting and nesting, hang in there and keep us updated. You are in my thoughts and prayers.

                                                                   Babs

Posted 1/4/2007 3:34 PM (GMT 0)
Babs, (((prayers and gentle hugs ))), Your prayers, and support mean so much. My goal is to be of support to others too. You have been through trials too. I hope that you are improving. You are in my thoughts and prayers, Cecelia

Bill, You do not ramble...what you have to say is very important. I can tell that you are passionate about helping others. You are an inspriation for me. I can not begin to imagine what you have endured. You have great courage and a huge heart. You have gone from death's door, to being quadriplegic and now you have started climbing the mountain. Although you haven't mentioned them, I sure that you have daily issues to deal with too. I can see you climbing to the top of the mountain in a short time. I am so glad to hear that you have a wife and sons for support and you have excellant health care. Thank you for telling your story...and the reason why you talk about it. It does give hope to me, and I'm sure to many, many others. I didn't talk about my illness because the people in my life just don't want to hear it. They are very uncomfortable about the issues I have to deal with on a daily basis and they don't know what to say. From now on, I will adopt your attitude about helping and informing others from speaking out. I don't know why I survived that one crisis, but I did. I don't understand why I have been given the trials that I have. The only thing I pray for myself, is grace.

When I was younger...from age 6 into my 30's...I showed horses, hunters and jumpers. I worked hard at it and won many championships...I golfed too, I fenced in college as well as showing. I studied ballet with my riding for many years. Always in the background was my music. I play the harp. On a good day, I can tune them. On a very good day, I can tune them and play. On a great day, I play for special needs groups, especially children. I am a very passionate advocate for Autism awareness and early intervention. One child in every 166 has autism. I am also very passionate about adopting retired greyhound racers. They are wonderful companions and can be greyt therapy dogs. We have three and I don't know what I would do without them...they are very empathetic companions and one has become my son's therapy dog. Now I will become an advocate about Lupus awareness...that's because of you.

I hope that today is a great one for you, (((prayers and gentle hugs))) Cecelia
Posted 1/4/2007 10:36 PM (GMT 0)
Cecelia,

Our spouses and families often do not understand the nature of AI diseases and can be in serious denial about our condition.  It is something that everyone has to work harder to understand and communicate.  While some of us will go into remission most of us will have our "friend" and all its' complications and risks for the rest of our lives.  2 of my 4 sons could not grasp for many months just how serious and how bad things were.  All of our sons are 40+ so they are not kids but they could not understand that dad, whom they always turned to for help, was down for the 9 count and struggling to survive. 

My wife understood but as I got better she did not understand the long term implications and risks.  Seeing a psychologist while I was in a rehab hospital helped and a local lupus support group helped her understand better what I had to face in the future.  None of this is easy for any of us. 

You are right that I do have lots of issues.  But we all do.  Barretts Esophagus, diverticulosis both of which put me at a higher risk of cancer.  Lots of other conditions but I just view them as minor obstacles and deal with them as they need attention.  That is not to say that I am in denial about them....just that I try not to think about them and get prudent medical care and tests to limit the future risk. 

Actually, this has helped me to live more in the moment...wished I had learned to do that 50 years ago!  I am determined to make the most of my time whether it is 1 year or 30 years.

Tomorrow I will spend most of the day with a friend in my rehab hospital.  His disability was caused by several infections and a surgical screw up after a heart transplant not AI.  But his physical challenges are similar to what mine were and he is being taken care of by they same nurses and PTs that took care of me a year ago.  Tomorrow will be the 1 year anniversary of the start of my recovery when I was admitted to the rehab hospital so it will be a bit emotional for me. 

Instead of dwelling on my problems though I will celebrate tomorrow as a new kind of birthday.  In many ways I was reborn physically and emotionally a year ago.

Wish you success in dealing with your problems.  All of this is so difficult for all of us. 

Bill

Posted 1/5/2007 12:14 AM (GMT 0)
I am anemic, first time in my life without my being pregnant. I have a lowered crit (37) which is not dangerous, but my iron binding capacity is low. I have had a low binding capacity for about 10 yrs. I don't clot well at all either and that has gotten even worse in the last couple of years. If I am up on my fluids, that is to say, I am drinking enough fluids, I "spurt" if I catch my finger on a pin or a needle (I sew a lot), and I don't quit bleeding as fast as I should. I am the one with a paper cut that bleeds all morning and is not that deep! Iron pills make me so sick to my stomach and kick up my IBS. I have been using prenatal vitamins and today my IBS is so bad I am in discomfort, even pain at times. However, I think the iron is starting to be a little better because I am not quite so tired this week after a month of iron.
Posted 1/6/2007 7:03 PM (GMT 0)
Hi to everyone,

I'm quite new to this site so have been poking around reading posts. I too have anemia as part of my mixed connective tissue disease so I clicked on this thread and got caught up reading your stories. Thanks so much for sharing.

Right now I am as good as I've been in a while but it was a difficult year last year going to doctors and searching for answers. The fatigue was overwhelming and a flare at the end of the summer left me barely able to walk and I had trouble just raising a fork to my mouth but I did not have as tough a time as it sounds like many of you have had.

Cecelia - I too have an autistic son. He is 17 now and a senior in high school and although he will take an extra year next year, we are hopeful he will graduate. I know how tough it is, sometimes overwhelming.

Bill - I too want to return to a more active life. What mountain in MA? I climbed Mt. Washington (NH) on my honeymoon. But I gave up scuba diving and hot-air ballooning because of this disease but hope to "recreate" myself with other activites.

Hugs and postive healing energy to you all.

Sue
Posted 1/7/2007 4:37 AM (GMT 0)

CaptSue said...
Hi to everyone,

I'm quite new to this site so have been poking around reading posts. I too have anemia as part of my mixed connective tissue disease so I clicked on this thread and got caught up reading your stories. Thanks so much for sharing.

Right now I am as good as I've been in a while but it was a difficult year last year going to doctors and searching for answers. The fatigue was overwhelming and a flare at the end of the summer left me barely able to walk and I had trouble just raising a fork to my mouth but I did not have as tough a time as it sounds like many of you have had.

Cecelia - I too have an autistic son. He is 17 now and a senior in high school and although he will take an extra year next year, we are hopeful he will graduate. I know how tough it is, sometimes overwhelming.

Bill - I too want to return to a more active life. What mountain in MA? I climbed Mt. Washington (NH) on my honeymoon. But I gave up scuba diving and hot-air ballooning because of this disease but hope to "recreate" myself with other activites.

Hugs and postive healing energy to you all.

Sue

Sue

It was Mt Wachusetts.  Only climbed up half way but that was a huge achievement for me.  One year ago I was a quadriplegic with a not so good outlook.  My son and his family ski there every weekend...well, not this year with the warm weather.

Most of my climbing is out west...Arizona to Alaska but I need to get much, much stronger to take on the climbs I could easily do 2 years ago.  Later this year i hope.  Also want to return to downhill skiing, hiking, and golf.  If I cannot then I will pursue other, less dynamic activities.  This winter I am not strong enough to ski but will snowshoe as soon as we get snow again.  At 64 I cannot do some of the things I did when younger but I refuse to let age or my disease define what I can or cannot do.  Until proven I cannot do something I will continue to assume that with enough work I can return to my beloved activities.

If not, I will still enjoy a redefined lifestyle.

Bill

Posted 1/7/2007 4:50 AM (GMT 0)
Hi Peaceful:

I have troubles with anemia, my hem/onc says that I have pernicious anemia. As well as the anemia that comes with the MDS. My body does not make enough red blood cells for my body. Thus it leaves me with a low H/H, my H/H is usually around 8.2/22 or so. I've been giving myself B12 shots weekly for the pernicious anemia, and of course when my H/H reaches 7/20 I received 2 units of packed red blood cells.

Having anemia really wears on a person. The worse the anemia is the more fatigued you will feel. I'm sorry to hear you're having issues with your son, I hope they improve soon. Have you had a phone call back from your Dr. about your latest bone marrow biopsy? Wishing you many good things, you're in my thoughts and prayers. Get as much rest as you can, and good luck to you.

Love,

Barbara
Posted 1/7/2007 4:58 PM (GMT 0)
Hi Bill, I will be thinking about you on your anniversary! What a grand way to spend it with you friend...you will give him hope and inspiration! I hope that your day is special....(((gentle hugs and prayers))) Cecelia

Hi Barbara, No I haven't had any of my calls returned. I think that they have close for vacation, I know all of the residents are gone. It's very frustrating and is causing much anxiety on my part. I have an appointment in 2 weeks. My husband is going with me. I can't imagine why a major medical center/hospital wouldn't return calls...can you? I'm also concerned that my MDS has progressed....I have very swollen lymph glands and some are protruding. Tomorrow, I see my rheumie...it will be a waste of time...alot of time. He hasn't and isn't doing anything for my lupus. Ugg! (((gentle hugs and prayers))) Cecelia

Hi Sue, and welcome to the forum! I'm sorry that you're having trouble with fatique. I think that along with joint pain are some of the toughest symptoms of lupus to cope with. That is wonderful that your son is going to graduate next year! You must be so proud of him! You're right, there are challenges and tough times but do they ever make up for the good times and achievements, no matter how small! I'm glad that you joined the forum and I hope that you'll post often! (((gentle hugs and prayers))) Cecelia

Lady Dragonfly, First of all, I love dragonflys! They bring such light and energy! I'm sorry that you're having trouble with anemia too along with IBS. I have intestinal problems as well in that I don't absorb vitimins, mineral and nutrients.When my anemian goes down, I have I.V. of iron/dextran and b-12 injections. Not to scare you, but there are also injections of iron that you can take....maybe that would help your IBS? I see that you're Vegan...maybe we could exchange recipee's (((gentle hugs and prayers))) Cecelia
Posted 4/23/2007 12:10 AM (GMT 0)
Hello! i have had low WBC's for over 10 years now. My lupus was diagnosed in 2000. We don't take anything for it. I used to take iron supplements, but not any longer. Have you ever taken methotrexate or plaquenil? I have taken both. My doctor may put me back on the Plaquenil, but I wondered if anyone has had relief with methotrexate?
Thanks.
Posted 4/23/2007 2:07 AM (GMT 0)
Hi Dianne:

Welcome to the forum. I saw your post and wanted to let you know there are several members here on methotrexate. I've been on it since November 2005. It's makes some difference in my lupus, but not a lot. This is my second time with taking methotrexate. I was on the max oral dose of 25mg per week, but my MCV level was to high, and my doctor dropped it down to 20mg per week.

I have have an additional health issue, that causes my RBC, WBC, H/H, Platelets to all be low. But lupus can cause all of these to be low too. I hope that your doctor can get you on the correct meds and you begin to feel better soon. Again, welcome to the forum, I'm looking forward to getting to know you better. This is a great place, everyone is very supportive and please feel free to ask as many questions you need to.

Take Care,
Barbara
Posted 4/25/2007 1:52 PM (GMT 0)
Hi Barbara,
Thanks for writing to me. I was diagnosed with undifferentiated connective tissue disease in 1999. They can't really rule SLE in or out, I kind of have an overlap (sclerosis syndrome) who knows? But I took Plaquenil for years, then went off. I have had a lot of trouble lately, & may go back on, but I was thinking back to my short time on Methotrexate, and wondered if maybe that would be better. Have you ever taken Plaquenil?
Thank.
Posted 4/25/2007 5:19 PM (GMT 0)
Hi Dianne:

I've been on plaq since 2001 and prednisone since then too. I've kinda run the whole list of meds for my lupus, the only thing I haven't tried is Arava. I have to wait on that for a few years, as I tried the rituxan infusions. You can't have them both close together.

I hope that you begin to feel better real soon.

Good luck,
Barbara
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