Stories 2013

2013 starts here

Fred’s story

Diagnosis:  Reynaud’s Phenomenon, Cold Agglutinin Anemia
Occupation:  Lecturer – Presenting travelogue programs in schools and retirement communities from world travels.
Height: 5′ 5″.   Weight:  132

I first noticed my face, hands, nose, and ears turning a purplish color when the weather was cold in 2010. I did not connect it to anything serious, and have always been a person who would like summer weather year-round.

When I mentioned it to my PCP, he said it was  because I was thin and didn’t have enough layer of fat on me.  I mentioned the same to my endochronologist, and he gave the same answer.  Neither suggested Reynaud’s, but I knew this was illogical since I had never had this happen before at the same weight level.  About a year later I first heard the term Reynaud’s Phenomenon, as was told to me by my nephew, who is a pathologist, and I began to research it on the internet.  Thus far, it was no big deal, but that would change when I received a phone call from my PCP’s office in July, 2012, telling me they had phoned in a prescription to my pharmacy for 30mg of Prednisone.  My first thought was remembering the comedian Jerry Lewis had been on Prednisone a few years ago, and had gained 70 pounds by the time he was doing his Muscular Dystrophy Telethon.  I went to my PCP’s office and picked up the lab report, and saw the diagnosis Cold Agglutinin Anemia.

I could hardly believe anything was wrong because I have always been a very high energy person, referring to myself as the “Energizer Bunny”, and felt full of energy at the time they told me to start taking Prednisone. I have been an avid hiker and walker for all my life, and have kept a journal of my distances the past 15 years.  My current goal during warm weather is to do 80 miles per month, but in winter, being forced inside the mall, I usually end up with 50-60 miles.  Just 7 weeks prior to my PCP ordering the Prednisone I had easily completed a 32-mile walk in NYC called The Great Saunter, a walk around the perimeter of Manhattan Island taking place on the first Saturday of May each year.  This year we had 890 entries.  The next two days after the walk, I was on foot in NYC taking photos from morning to dark, with lots of energy as usual.

At the time my hemoglobin level was 12.2, but it was 9.9 when my doctor ordered the prescription.  I began taking Prednisone on July 31, 2012, 30mg/day.  I really felt like I was being told to take a drug in spite of the fact I felt perfectly well, even at 9.9. The Prednisone certainly worked, as a test on August 15, 2012, showed my hemoglobin to be up to 14.0, from 9.9.  I faithfully took the Prednisone for one month, but just didn’t feel up to par while taking it in spite of my numbers looking good on paper.  One day I was doing a presentation and used a laser pointer to show something on the screen, and couldn’t control it.  The red dot was all over the screen because my hand was shaking so much, almost like palsy.  It was at that point I made a decision that I didn’t want Prednisone in me any longer, and stopped taking it cold turkey.  I knew you were not supposed to do this, and that you needed to be weaned off over considerable time, but I had no problems at all by quitting.  I quit on August 29, 2012, and it didn’t take long for my hemoglobin to drop, as my bloodwork on September 7, 2012, showed I was down to 7.2.  I actually felt great at this point, and back to my normal energy in spite of the number being low.

On September 15, 2012, I left on a 1-week car trip alone to Chicago, feeling great the entire time, taking photos and walking all day until dark with no fatigue at all.  I was glad I was off Prednisone, and felt back to my normal life.  At this point I was unaware that my hemoglobin was at 7.2, and found out 3 days into my trip, when my PCP’s office called while I was in Chicago, telling me to go back on 30mg of Prednisone per day.  I had taken the medication with me on the trip just in case I might need it, but I had no desire to go back on 30mg/day considering how it made me feel for a month.  I decided I would try again, but to take only 20mg/day.  At this point I was looking for a new PCP anyway, so I was on my own.  I still have not found a PCP for the past four months, but am fine without one for a while.

What I did was locate a hematologist.  My next bloodwork came on October 29, 2012, with my hematologist, and had been taking 20mg/day of Prednisone, with my hemoglobin up to 11.2.  However, the Prednisone still made me feel less than normal, and just wanted to get off it again.  I am so glad my hematologist has been willing to let me gradually decrease the amount I take, and by November 26, 2012, I was taking on alternate days 15/20mg of Prednisone, and my hemoglobin was 10.5.  I was then allowed to decrease it to 10mg/day, and my hemoglobin on December 19, 2012, was 10.1  We have since decreased it again to taking 5/10mg/day on alternate days, and will find out in a week how it is doing.

I have told my hematologist I would like to do an experiment, and just stop taking it again to see what happens.  My feeling is that while the Prednisone works, the treatment is as bad as the problem.  I keep thinking how well I felt in Chicago, walking 10-15 miles per day, Prednisone-free, but was at 7.2.  I think there may be a mental factor involved in that if you are having a great time and motivated toward a goal, it can help override the fact your hemoglobin is low.

I know taking Prednisone long-term is a potential problem, so if it is causing damage somewhere in your body, and you have to stop taking it at some point anyway, why do it.  It looks good on paper, but how do you feel?  The idea of course is to determine if Prednisone will raise your hemoglobin level, and then to wean back off of it after a while to see if your system will then click back or normal on its own so that hopefully you can do without Prednisone.  What we hope for is a remission.

At the present time I am going back to NYC to do the 32-mile walk again on May 4, 2013.  This will be a challenge for the first time, having done six already.  If I had to do it today, I am not sure how far I would get.  I sort of think I could do half, at which point you may have exhausted any more capacity for your blood cells to get enough oxygen to your legs to continue.  It will certainly be a great test, and provide valuable data as to whether you can continue to walk for 10-11 hours.  I will know more as the time between now and then progresses, and will be lengthening my walks, especially when the weather improves.

One thing for sure is that doctors are not likely to have any experience in their practice with a patient having Cold Agglutinin Disease.  I am fairly certain I am the first and only patient my hematologist has had in her practice with CAD.  It wouldn’t be unusual for a doctor to go an entire career and never see a patient with CAD.  You may well know more than they do with the exception of interpreting the complex lab reports.

I have in fact learned more on my own from this website and from searching the internet than any other source. None of the doctors have told me things like taking Folic Acid, and am now taking 2mg/day, after suggesting it myself to my doctor.  I also take iron, every other day, and B12 every day.  I recently read about a CAD taking B5, which is Pantothenic Acid, which is important to the manufacture of red blood cells, and am now taking it as well.  This website is our greatest source of information because collectively we can tell what we have learned on our own or from our doctors.  B5 should be taken after a meal by the way. Avoiding cold drinks, or cold anything is adviseable, and also avoiding caffeine.  We tend to think of cold weather to be avoided, but drinking anything cold is putting cold directly into your insides.

Aside from giving me a prescription, I have received no helpful information from the medical profession about taking Folic Acid, iron, B12, B5, or anything except one nurse who said Prednisone can affect your muscles, and you should therefore exercise those muscles.  I found it interesting that at least one CAD is taking 5 mg of Folic Acid per day, and apparently nothing else, and for me that may be the next way to go if I can eliminate Prednisone.

I know having CAD has been devastating to me, since it puts limits on your stamina.  I can still do my 80 miles of walking per month without it being a problem, but now hike on level areas and not back to hills as yet, since it takes your breath away.  I recently told a friend that if an Olympic athlete found out they are now CAD, their athletic career would likely be over.

I need to mention what Prednisone does to me.  I always take it at lunchtime, and after this I feel overfull, and a loss of appetite, sort of like having a mild upset stomach.  I also get acid reflux sometimes, where none ever existed before.  I can take a Zantac or Pepcid to relieve this feeling, but try not to, because I don’t like the idea of taking one drug to eliminate the side effects of another.

I still have a lot to learn.  I especially am interested in seeing what happens to hemoglobin levels in summer weather compared to winter.  Apparently, the red blood cell destruction is greatest when exposed to cold weather, and minimal in hot weather.  I wonder if I went to Hawaii for the next month or so if my hemoglobin level would stay up by itself without taking Prednisone.  I haven’t had this long enough to know how the seasons affect the blood tests.  I also wonder if those who live in year-round warm climates, as to what degree this makes managing CAD easier.

One final thought – I am interested in knowing from someone who works out a lot at a gym, if they have been able to fight CAD, and maintain something close to their athletic abilities in the past.  I wonder if working out, and pushing yourself physically, has helped get back some of your stamina.

Feel free to contact me.

Update April 2013

It has now been 10 months since being diagnosed with Raynaud’s and CAD.  Since my initial story, I have been given insurance approval for the Rituxan treatment, which involves 4 treatments, one per week, given as an I.V. in the doctor’s office.  This approval was given about two months ago, but haven’t as yet begun treatment.  Of the past 10 months I was on various doses of Prednisone for 7 1/2 months total, having quit cold turkey once, and then being weaned off the second time.  My last day of Prednisone was March 1, 2013, nearly six weeks ago.  The reason for not starting the Rituxan is because my hemoglobin levels started improving with every new blood test after stopping Prednisone.  Since I was improving, it meant postponing the Rituxan to see if I would continue to improve.  I would like to state that Prednisone is an “old school” treatment, and that the preferred choice is Rituxan.  I note that it is common to see that other CAD’s never took Prednisone, and received Rituxan early on.  I think it is important to list my hemoglobin levels over the past 10 months to see the pattern.

June 1, 2012   12.5  No medication.
July 25, 2012    9.9  No medication.
August 15, 2012  14.0 – A result of taking 30mg of Prednisone per day
September 7, 2012  7.2 – Had stopped Prednisone cold turkey
October 29, 2012    11.2 – Taking 20mg of Prednisone per day
November 12, 2012   11.5 – Taking 20 mg of Prednisone per day
November 26, 2012   10.5 – Taking 15/20mg of Prednisone on alternate days
December 19, 2012    10.1 – Taking 10mg of Prednisone per day
January 9, 2013    9.9 –  Taking 5/10mg of Prednisone on alternate days
February 4, 2013   10.6 –  Taking 5 mg of Prednisone per day
March 1, 2013   10.7  –  Taking 0/5mg of Prednisone on alternate days
March 21, 2013  11.0 –  Taking no Prednisone
April 11, 2013  11.8 – Taking no Prednisone

As you can see, my hemoglobin levels started improving gradually as the amount of Prednisone was decreased, and especially so after the Prednisone was stopped.  The low end of normal range for hemoglobin for a male is 12.6, so am closing in on that.  Thus the reason for postponing Rituxan.  At the same time my RBC numbers were also improving.  Since March 1, my RBC has gone from 3.49 to 3.94.  It is apparent my CAD is a milder one than others, and regret how many CAD’s have had to have transfusions.  I should also mention that my Raynaud’s is still as severe as ever, and being in cold weather for only a few minutes results in purple skin tones on hands and face.

The big question is:  Why would the hemoglobin levels improve after stopping Prednisone?  There seems to be no explanation for this, as one would expect the levels to decline as the Prednisone dosage was reduced.  After stopping Prednisone I was expecting my hemoglobin level to be below 9.0, and instead it was going up.  It would seem there might be a gradual remission taking place.  I don’t see my doctor for my next test for 5 weeks now.  A big test will be on May 4, where I am to do a 32-mile walk in New York City around the perimeter of Manhattan Island, where there will be about 900 entries.

What I am about to mention next as a possible explanation for my improvement will sound bizarre, but feel I should take the risk to mention it, as others may wish to investigate this phenomenon.  There is a technique called “Tapping”, also known as EFT.  It is a form of acupuncture that involves tapping with one’s fingers on various meridian points on the body in a certain sequence while saying specific words.  There are websites and books explaining this, such as the website for Silva Mind Control.  I have been “tapping” only half the days of the past couple of months, and should be doing it every day.  It is the only explanation I can imagine for my improvement, although taking Folic Acid, B5, iron, and B12 tablets has been a big factor, which is certainly likely.  I have been taking these supplements even before I tried the tapping.  It would be a mistake for me not to mention this potentially helpful technique.  It is mostly used for emotional reasons, but also for certain physical problems as well.  Feel free to contact me.

Update July 2013
I have not had any Prednisone for 4 1/2 months now, nor have I had the treatment of Rituxan, although I had been approved for it.  My hemoglobin levels were good enough that the Rituxan kept getting postponed.  On May 3, 2013, I completed the 32-mile walk around the perimeter of Manhattan that I have mentioned previously, and did so with no problems, other than Reynauds causing my skin to turn purplish for a couple of hours due to the cold.  I had no problem physically doing the walk at all, so this gave me a lot of good feelings in regard to having CAD.  I did the walk in about 11 hours time, with only about one hour of that for lunch and breaks.  We had 950 entries, and 450 did all 32 miles.  I cancelled by appointment with my hematologist for June, 2013, because I am feeling fine.  I don’t have another appointment set up, so right now I am going by the idea of “if it isn’t broken, don’t fix it”.  I have been doing some hard labor type of work the past couple of months, and doing fine.  I don’t know my current level of hemoglobin, and since I feel good, I don’t plan to find out for quite a while.  I continue to do my walking regimen, my goal being 80 miles per month, although my schedule often results in it being only 50 or so.

Fred Hartman
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Marla’s story

Marla Vanderlaan ~ 64 yrs old ~ married to Glenn ~ Retired Rural Mail Carrier.  Have 3 grown children & 7 beautiful grandchildren, who all live within a half hour from us in Michigan. We do go to Belize for 3 to 4 months in the winter.

Fall of 2005, I had a physical & MD didn’t like the looks of my blood work, had it re-done & it was worse!  I was sent to a oncologist, who watched me continually get worse & did nothing to help me or figure out what was causing this problem w/my blood.  Found another Dr. & got a 2nd opinion, he immediately started testing me & it took a bone marrow test to find this disease.  This was Feb. 2006.  While Dr. was figuring out a treatment plan I went on vacation for 2 wks. came back was 6.2 hemoglobin & had an emergency blood transfusion.  My Dr. decided the best treatment for me was injections of Aranesp, w/occasional blood transfusions & 1 mg Folic Acid.  Due to the type of job I had (very cold in the winter months) he offered to help me get disability, however, I said “no” I am able to work.  He also tried prednisone, which I had a horrible reaction to, said he had never seen it do such a personality change on a person & had to wean me off it immediately!  That was an experience I’ll never forget!  And a boss, that would get very very angry w/me when I needed time off for this disease (he thought it was something I made up).

So we retired, changed insurance companies, and my Dr. left our office & I was assigned a new Dr. (he’s great) but the insurance co. said that Aranesp wasn’t the treatment for what I had, as did my Dr.   Hence 2 yrs ago I had my 1st Rituxan treatment (series of 4) the 1st one always causes a reaction, I get freezing cold & have uncontrollable tremors, and it’s usually a 9/10 hr treatment.  However, the next 3 treatments I breeze right thru.   I am presently doing my second time of the Rituxan treatment, with tomorrow being my last treatment (6-19-13).

I have been a lurker on this board for many yrs. and have decided that I need to join, I need the support of other ppl that have this same disease, as friends/family don’t understand the change in lifestyles due to the fact that I don’t look sick!  Thank-you for letting me tell my story.

MARLA & GLENN
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….Life’s A Beach

Øivind’s story

marlaHello my name is Øivind, I am 44 years old and live in the city of Bergen Norway. I`m married and proud father of two wonderful girls. I used to work as a Lawyer, but changed in to public office 4 years ago because of problems with severe CAD.

I have suffered from severe psoriasis arthritis for many years. CAD was discovered in 2007/2008 with a HGB value about 8 and Reynaud symptoms. I had several blood infusions. At the time I was working hard as a Lawyer and – looking back- I felt really exhausted. Thankfully I was taken care of by highly competent/caring doctors in Haukeland University Hospital ( Bergen) and was offered to participate in the Mabthera (Rituxan) Fludarabine study by Dr. Sigbjørn Berentsen at the Hospital of Haugesund  (Norway).

MabThera was administered by veneflon infusion and Fludarabin was taken orally as pills.  According to my local specialist my case turned out with more side effects than usual. My problem was repeated respiratory/lung infections and I experienced deep vein thrombosis and several episodes of biliary tract inflammation.  My understanding is that the two problems last mentioned was (most likely) unrelated to the Rituxan/Fludarabin treatment.  About 1 ½ – 2 years after finishing the treatment I experienced a radical improvement with HGB 13.4. The improvement continued with HGB stable around 14.5 and – after a while – no signs of pathology in my blood work. In other words complete remission. Last month my HGB was 14.4 and status was still CR.

I`m very thankful for the excellent medical care I have received and the good results described above. Still I have read that it may be questioned (in general) whether the treatment should be recommended as standard protocol for CAD because of possible side effects. I would assume that the question of trying this combination should be carefully considered for each patient by competent doctors and the patient should (of course) make his decision based upon complete and solid/best available information.

However- at the time (and for the last years) I feel healthy and enjoy life up here in the cold north. I even climb the mountains and participate (on a very low level) in up hill competitions.

I hope the best for all.

Update June 2015

It has been a while since my last message. I was one of those who participated in the research project to Dr. Sigbjørn Berentsen in Haugesund, Norway.  7 years after treatment with MabThera/Fludarabine my blood percentage (HB) is 15.6.  In 2009 it was as low as 6.6. There are no signs of disease.  For me, the treatment had very good and long-lasting effect.
I hope you are all doing well.

Øivind Bjørkås
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Jeri’s story

My name is Jeri Mastny. I am 76 years old, married, and live in San Diego, California (fortunately). I have known that I had CAD for four or five years. It started with an ordinary physical when the labs could not test my blood because it clumped or clotted too fast. After about 17 blood draws at different labs, I was referred to a very excellent hematologist. He keeps that lab on their toes and it is a relief not to be called back all the time for repeated blood tests. He also told me the diagnosis for this disease and I appreciate your web site as a good source of information.

Since the diagnosis, I have learned to live with the disease and try to keep my hemoglobin somewhere in the 9.0 + range. I go in for a blood test about every two months or when I feel the symptoms are worse. Sometimes, the symptoms of this disease cause me problems, but usually they do not. I have taken up drinking tea or room temperature beverages. I can’t resist a little ice cream now and then, paying the price for it afterward. My tongue gets numb like I have been injected with Novocain. I am careful to wear gloves when removing something from the freezer. I try to visit my relatives in Niagara Falls, NY when the weather is warm. My husband prefers to go in late fall or winter and then I take the precautions that I need to.

Last week, I was admitted to the hospital because of gall stones. A gall stone had lodged near my pancreas and liver. That was removed during an Endoscopic procedure. They were going to take my gall bladder out immediately, but my HGB dropped to 7.5 and my bilirubin went way up. They postponed the removal of the gall bladder and after 4 days, sent me home. Everyone at the hospital seemed to be attentive to my needs. They borrowed a liquid warmer from the OR for the IV, although because the drip was very slow, it was not warm by the time it got to me. I expect this is what I will need if they ever decide I need transfusions to control the disease. I kept having to ask for warm blankets and before I left the hospital, 5 had accumulated in my room. One thing that I learned about this experience was the possibility that CAD could cause more incidence of gall stones. I had not heard that from other doctors, but I suppose that it is not important information until you have this happen. I asked why my HGB dipped so low as a result of the procedure and was told that maybe the scope was cold and my body reacted to it.

Jeri Mastny
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Barry’s story

I’ve retired from two careers, commercial art and cell biology.  I’m presently 66. I was diagnosed with CAD in 2004, and later that year, was also diagnosed with Buerger’s Disease (a recurring progressive inflammation and clotting of small and medium arteries and veins of the hands and feet). I was 2-pack/day smoker for 45 years, but quit in 2004 after being diagnosed with Buerger’s Disease

My wife and I are both originally from the northeastern seaboard of North America, both ending up in the US southwest. We lived there for about 20 years, and then left in 1998 and headed north, now residing in Northwest Pennsylvania. To make a long story short, in 1999, I could still play golf when it was above 35F. Now, in the summer of 2013, I’ve been wearing battery heated gloves and soles almost 24/7.

In February 2003, my wife noticed for the first time that I have dark purple areas on my face and ears while outside in the cold. Buerger’s Disease was diagnosed with an angiogram. An attempt to treat it with steroids didn’t do much, but every year, we ended up buying more and more foot warmers and hand warmers, end eventually got to the point this year as described above, with accompanying chronic pain.

Unlike many CADdys, I’ve had no blood transfusions, but I am usually jaundiced. And unlike many of you, the discoloration of my extremities is not accompanied by full body cold, but my hands and feet hurt where I can’t walk w/out limping and opening a bag of screws might be darn near impossible. I’ve gotten ulcerations on my toes and fingers, and have lost a few fingernails.  I’ve also noticed a pattern where, 2-3 weeks after any chest infections, I have episodes of discoloration and pain in my fingers and toes.

My oncologist suggested rituxin about 7 years ago, but was leery about it due to my asthma and other deleterious side effects. A specialist in CAD at U Pittsburgh Hillman Cancer Center has re-suggested rituxan, and given the worsening symptoms, I’m seriously considering it.  I’ve just (Sept 2013) had the CT scan and associated blood tests to establish a new baseline (in February 2008, my titer ranged from 1:512 to 1:1024).

I am grateful to have found this website and grateful to the CADdy community for sharing their stories and information through this site and through the Facebook group.

Barry Bonnell
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Art’s story

My name is Art Brown. At the time of this writing in 2013 I am 64 years old. My home is in the United States. My wife and I live near Rockford in the State of Illinois. We are approximately 100 miles west and slightly north of the city of Chicago.

I am a diabetic and as part of my routine care I visit a neprologist (kidney doctor) on a regular basis. I have been slightly anemic for a number of years and began getting noticeably worse in 2011. The neprologist assumed that my anemia was due to decreased kidney function and began treating me with monthly injections of a drug named Aranesp.

I was not responding to the Aranesp as the doctor was expecting, so she began thinking that my anemia was from some other source. I bet that you have already guessed that fact due to the nature of this website. I was therefore referred to a hemotologist (blood doctor) in October of 2012.

After running a number of tests, the hemotologist diagnosed my problem as autoimmune hemolytic anemia and began treating me conservatively with a mild dose of Prednisone. I failed to respond to the Prednisone so she began treatment with Imuran (an anti rejection medication often used for kidney transplant patients).

During the first weekend of December 2012, I became ill with some sort of a stomach virus during the night. By morning, I began feeling better but I was very weak and extremely fatigued. I didn’t think much of this due to being ill.  I had an appointment with the hemotologist on Tuesday morning. I was certainly over the stomach virus but I was so easily fatigued that I barely had strength enough to brush my teeth and take a shower. I could barely raise my arms to wash my hair!

I went to my doctor’s appointment and as usual they ran blood tests upon arriving at the office. The doctor got the results and immediately sent me to the hospital emergency room. My hemoglobin level was down in the area of 5!

I was poked and prodded and prepared for transfusions. Testing prior to receiving the units of blood disclosed that the hospital had to warm my transfusions. This was the first indication to me or to my doctor that my issue was CAD! It was then that I remembered my son-in-law mentioned that while helping replace his well pump in November that my ears had turned purple.

Prior to confirming that I had CAD I was once again started on Prednisone…….this time in a big dose, 160 mg.

After several days in the hospital and confirmatory testing that I had indeed been suffering from CAD, the doc began weaning me off of Prednisone slowly, and I began four weeks of Rituxin treatments. In addition, I read everything I could find concerning CAD and found this website, which has been very helpful.

At first I did not respond to the Rituxan. Meanwhile, I was having a lot of problems with Prednisone side effects. No strength in my legs, high blood sugars, massive appetite, problems with bodily functions………..I was also put on insulin to combat the high blood sugars caused by Prednisone.

In the middle of January, I was back in the hospital. This time I had a pulmonary embolism  (blood clots in the lungs) and deep vein thrombosis in my legs (blood clots in my legs). While in the hospital for this issue my hemoglobin level fell to 7 and I received two more units of blood.

Over the course of the next few weeks, I began to get better slowly. My hemoglobin levels stayed around 10.0. I wasn’t getting better, but I wasn’t getting worse either!

It took a couple of months before the Rituxin seemed  to begin working in earnest. But once it started working, it worked like a miracle!  By the middle of the summer I was feeling great and my hemoglobin levels were up to 15.2. In addition, all the rest of my blood tests have returned to normal levels. Now my kidney function has improved, my blood sugar levels are much better, my eye sight has improved and I have gotten back all my strength and more. I haven’t felt this good in years! I have spent all summer busy as a Tasmainian Devil!!

The doctor has been monitoring me on a regular basis and as the cold weather appoaches I will be monitored more often. Hopefully, I can stay in remission. I am very grateful to the doctors and the wonders of modern medicine.

One big lesson I learned was that this is a very rare affliction. I am the first patient that my hemotologist had ever treated, and only the third patient treated by the entire oncology department at the hospital in Rockford, Illinois which serves a metropolitan area of around 250,000 people!

Thanks for reading my story and I wish you all the best.

Art Brown
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David’s story

David McAdamMy name is David McAdam, I live in Sydney, Australia, and in 2013, am 76 years old.

2011. It all started with a morning shower…

Back in April 2011 (autumn in Sydney) during my usual morning shower, I noticed that the top two finger joints on my right hand were purple in colour and the rest of the fingers were mottled. I had never seen this condition before and was quite puzzled. So I visited my ageing GP for his advice. His response was that “you must have some poor circulation and most sufferers put their hands in warm water to improve the colour and circulation”. My GP retired shortly after and I moved to a new GP.

Her response was quite different. She ordered a battery of blood tests and gave me a reference to a haematologist who diagnosed my condition initially as some form of haemolytic anaemia. My haemoglobin (Hb) count at this time was approximately 80. (I dug out some old copies of blood tests which I coincidentally had, one of which dated back to 1973 and which showed my then normal Hb count as 153.)

July 2011. In checking these old files I found one in 2008 ordered by my old GP which reported that it could not obtain an Hb count as the blood sample had ‘agglutinated’. I had not spotted this entry at the time, nor had my old GP.

Over the following weeks and months, the haematologist changed his diagnosis to Cold Agglutinin Disease (CAD). To make sure I did not have lymphoma, he had me undergo a bone marrow check using local anaesthetic. I do not recommend this procedure to anybody – unless they are fully sedated and preferably knocked out completely. I have never experienced a more painful procedure. The test proved negative: I did not have lymphoma.

My initial medication was a fairly strong regime of Prednisone. My mental acuity improved out of sight, I felt very relaxed and happy. I reported this, and the haematologist’s reaction was to get me off the Prednisone ASAP. Apparently some patients can react strangely! In any case the Hb count did not budge from the low 80’s. However I was unlucky to experience one of the things that can happen when one lowers one’s immune system – Shingles suddenly appeared! Since I was a bit slow in getting the preventative tablets for Shingles it look many weeks, I lost 10Kg in weight in 2 weeks and I have a reminder every time I now take a warm shower – I get a tickle at one of the shingles locations.

Over the next half dozen appointments, the haematologist checked my blood tests and confirmed that I indeed had CAD. However he had no solution to offer apart from possibly using Mabthera as a treatment, but as I was not a lymphoma sufferer I could not expect any government support for a subsidised Mabthera treatment.

July 2012. I was recommended to approach another haematologist and first met with him in August. He interviewed me in company with his haematology registrar and I then underwent a battery of blood tests, far exceeding anything I had experienced before (at least 12 vials of blood were drawn) and a second bone marrow test, this time with full sedation so I did not feel a thing. Plus a genetic test to eliminate possible genetic hand-me-downs. All results showed it was just CAD.

The conclusion was to try Mabthera infusion chemotherapy since my Hb had dropped to the 80’s again. This was done over 4 weeks and my Hb rose to 112 after a few more weeks.

2013. Life became 2-monthly visits to the hospital, blood test and consultation with my haematologist. The Hb slowly lowered down to the 90’s by August.

August 2013. Underwent a second Mabthera infusion regime. Again the Hb jumped in response and held above the high 90’s for a few weeks. But then my gallbladder announced that it, in its opinion, should be removed. Ultrasound showed that it was full of “sludge” and micro stones, presumably debris from my liver’s disposing of the red blood cells as the CAD antibodies killed them off.

Sept 2013. My Hb was too low for an operation, so a blood transfusion was quickly arranged, and the gallbladder operation accomplished. Hb at the end of all of this was about 106 and has held steady for the following 2 months.

Nov 2013. Acquired a very, very bad cold, which put me to bed for 3-4 days. Lots of coughing etc. My Hb has dropped to 88. Since we are now entering the summer months in Australia, we have decided to see what happens over the next 2 months before the next step is decided upon.

Back to feeling lethargic, thinking hazily as through a curtain, just general lack of energy. Will post again when the scene changes.

David McAdam
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