Lupus and Anemia

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python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 5/14/2008 10:52 AM (GMT -6)   
 Hello everyone
 I hope you are all having a pain free day. OK, so what's the deal with lupus and anemia? Before I was diagnosed, I had been told for years that I was "slightly anemic"  Well, this morning my rheumy's nurse called me and said my latest bloodwork "shows my anemia to be worsening". I check when I go to the bathroom and it doesn't appear to be in my stool ( have done the hemocult tests before), so where the heck is it going????? I guess this explains why I have felt more tired and run down lately? Any ideas on what's happening?
   Gentle Hugs to all
   Donna
SLE, Lupoid arthritis, Mixed Connective Tissue Disease, Scleraderma, Polymyocitis, Reynaud's, Hypo-Thyroidism, Pericardial Effusion, Irregular heartbeat
 
Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Vicodin.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 5/14/2008 12:38 PM (GMT -6)   
Hi Donna,
 
Anemia is VERY common in lupus and connective tissue diseases.  The body can't make enough red blood cells.  I was chronically anemic at the time of my diagnosis.  It's something we watch with blood tests every month (hemoglobin).  A very serious form of anemia is hemolytic anemia.  Where the immune system attacks the red blood cells and kills them off.  It's potentially fatal.  I had an episode of that last summer during a medication allergy.
 
Definitely something your doctors will be watching.  If you start feeling extremely weak and lathargic, it could be that your hemoglobin is quite low.  A good dose of prednisone and some iron suppliments will help to normalize it.
 
I hope this helps,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/14/2008 2:39 PM (GMT -6)   
I have had low red cell counts off and on since childhood. My blood iron level is always fine and taking extra iron makes me physically ill. My red cell count finally stabalized after being treated for over a year. I think that the inflammation we experience may somehow be related to our problems producing enough red blood cells but have no scientific or medical backing for the idea- just one of those I wonder if this might be the reason thought processes. I would ask to have your blood iron levels checked. If they are low then taking iron will help. If not then something else will have to be done. I wish you luck, we still have no clue what really caused my problem or what eventually helped it beyond treating the lupus.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1215
   Posted 5/14/2008 5:12 PM (GMT -6)   
Anemia is very common with lupus.  I have had mild anemia for 18 years or more.  Anemia and low platelets were early warning signs of what happened to me in 2005 but I was asymptomatic until Jul 2005.
 
In my case sufficient red blood cells were being produced but they were being "eaten" by my spleen.  I spent 9 months being tested by a hematologist and he was the one that figured out I had lupus before the first physical symptoms.   A few months later my docs diagnosed MCTD but it was anemia and low platelets that were the first symptoms.
 
There are different causes of anemia and therefore different treatments.  In my case the solution was to control my immune system and then my blood returned to more normal numbers.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1215
   Posted 5/14/2008 5:18 PM (GMT -6)   
Donna,
 
I overlooked the fact that you have mctd.  Do you have any significant muscle weakness?  Mctd can cause fatigue in many ways so it is no surprise you are experiencing it.
 
Has you GP or internist looked at ALL the meds you are taking including aspirin, tylenol, vicodin?? 
 
Do you have any symptoms of scleroderma or PM?
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 5/15/2008 11:29 AM (GMT -6)   
Thank you for the info. Redrose, I will definitely check into having my blood iron levels checked. Bill, my muscle weakness has not been bad for a while now. It's just recently that I have been more fatigued than normal. Whenever I go to ANY of my doctors I always take a complete list of meds I am taking at the time. As for the scleraderma, it mostly shows in my lower legs....they are red, swollen and hard...docs have me on lasix and wearing pressure socks for edema but they don't seem to help much. I do have pain in my muscles and joints, but I do not hurt as much as my docs seem to think I should be. *shrugs*
Gentle hugs to all
Donna
SLE, Lupoid arthritis, Mixed Connective Tissue Disease, Scleraderma, Polymyocitis, Reynaud's, Hypo-Thyroidism, Pericardial Effusion/pericarditis, Irregular heartbeat, Hiatal hernia.
 
Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Vicodin.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1215
   Posted 5/15/2008 11:34 AM (GMT -6)   
Donna,
 
Have your docs tested you for kidney involvement?  Proteinuria (kidneys filter proteins out of your blood) often causes edema in the lower legs.  I had it and it was quite bad.  An ace inhibitor, lisinopril, and lasix took care of it eventually.  My feet, ankles and legs were badly swollen and like stones.  Red, stiff, and very painful.  There were additional causes of the swelling and my joints and muscles were also inflammed.
 
Just a thought.  I lucked out and did not have serious permanent kidney damage so it has been relatively easy to treat and I have not had any problems for 2 years.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


gonkerette
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/31/2008 11:47 AM (GMT -6)   
Hi,
I am new to all of this. I have know I have mctd for several years. It is getting worse all the time. I have lumps that come up under my skin that are getting very bothersome and severe pain in my legs that I take Tramadol for, four times a day. It is getting so that it doesn't help any longer. I have had four strokes and recently had to have a corpectomy. The strokes have been since I turned 50 and I am now almost 53. I have Raynauds, mitral valve prolapse, antiphosholopid factor, lupus, hypothyroidism, and now several years ago was diagnosed with MCTD. I am sp extremely tired. I am working a full time job, but I must say I feel it is becoming a very difficult thing to keep up as I crash as soon as I get home. Once in a while I crash and don't get to work at all. We do not have a good reumatologist in our area. The closest is in Baltimore. I am not sure what to do as I read about the different prescriptions and what they can do, but I don't know how much longer I can go without doing much of anything. I am on thyoid medicine, tramadol for the leg pain and topamax to regulate my heart. Any suggestions to increase my energy level. I do try to use my enery sparingly to avoid total wipeouts. Does anyone know what the big bumps are under the skin on my legs might be? They are very painful. I get them alot all over my legs. I am extremely photosensitive with my skin so I avoid the sun as much as possible. Any help or suggestions would be greatly appreciated as I am now starting to dig for more answers since it is more than just lupus

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1215
   Posted 5/31/2008 12:07 PM (GMT -6)   
I also have mctd and had a very extreme case.  My symptoms were different but every case is unique and there is a wide range of how the disease progresses as well as how it responds to treatment.
 
The first order of business would be to get you to a specialist clinic like Johns Hopkins which has a Myostis Clinic (the only one I know devoted to these diseases in the USA).  They have experience dealing with MCTD and can help to confirm the diagnosis and recommend a course of treatment and possible physical therapy to help restore weakened muscles and help with your stamina.
 
 
Fatigue is a difficult issue and can be caused by many things.  My guess is that the doctors will tell you the first thing is to get your immune system under control. 
 
I have come back from losing 40 lbs of muscle mass and not being able to swallow.  Spent several months in hospitals and doing out patient therapy and have continued on my own for more than 2 years.  I have progressed from being a quadriplegic to returning to golf, skiing, tai chi...and lots more.  Fatigue and weakness is still with me but much improved after all the work.  This is a complex subject but I am an example that recovery is possible even in extreme cases.
 
There is another site, www.myositis.org with forums and more patients with mctd.  There are people there who have gone to JH or can recommend other doctors/clinics in your area.
 
Contact JH and start the process.  You do not want to leave it untreated.  Unfortunatley there is no magic pill for fatigue but once you get things under control therapy can address that issue to some degree.
 
Good luck,
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 

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