Anyone else with Pernicious Anemia?

cfdr

I finished up chemo in December, and chalked up my continuing fatigue to that. I've been active, but still dealing with LOTS of fatigue. In In June I was tested for thyroid issues, which were OK, but the test revealed a B12 deficiency. A follow-up test revealed that I have pernicious anemia, an auto-immune disease in which the body does not produce the chemical needed to metabolize B12 from food (so I can't just pop supplements or eat more meat).

I'm wondering if anyone else on these boards is also dealing with PA. I just got my first monthly maintenance shot, was exhausted the rest of the day, slept 11 hours last night and woke up unrefreshed. To complicate things further, vigorous exercise can deplete your B12 stores...so the #1 gtreatment for fatigue sometimes exhausts me further. 

I'm looking to compare notes with anyone else who is dealing with both PA and BC at the same time.

Anonymous

Hi cfdr....I was just diagnosed on July 27, 2012.

About 5 years ago I was having stroke like symptoms. Lightheadedness, numbness, and weakness on my left side. My lips on the left even felt fuzzy.

I spent the night in the Er observation unit, and underwent many tests including, blood, urine, chest X-ray, MRI, and ct. Scan.

I was finally told that I have pernicious anemia. For a while I took B12 shots, but have been on pills for at least 4 years. They work fine. No more dizziness or weakness.

Sublingual works best..the flavored ones you put under the tongue.

I found out from doing my own research that left untreated, pernicious anemia can lead to Alzheimer's.

Alicethecat

Hello CDFR and Soteria

I've had pernicious anaemia for 18 years and have been getting a B12 injection to the muscle every three months.

Don't think it has any connection with my diagnosis but I am not a doctor so who knows?

Anyway, eminently doable via the injections. Just becomes a way of life.

Good luck!

Alice

cfdr

Going back to my PCP tomorrow...I don't think I got enough loading doses (CDC recommends 8 weeks, I only got 4) or something because the fatigue is still really bad. My onc suggested that if I get the PA under control and I'm still fatigued, to try (1) upping my antidepressants (which I started just before chemo) and if that fails then taking a "vacation" from femara to see if that makes a difference. I've also been supplementing with 5000mcg methylcobalamin sublinguals every day. But I know that I was anemic and had megaloblasts at the end of chemo, so maybe it's taking me longer than normal to get on an even keel.

DLife2C

I recently had a BMX, January 16, 2013. I have had PA for over 15 years. It was diagnosed after my thyroid was under control, but I still had weakness and fatigue, up to a point where I had lost feeling in my fingertips, and I could not feel my feet touching pavement when I walked, thus I had an awkward gait and sometimes limped from the muscle and nerve weekness. It got so bad, there were times when my brain could not tell my legs to move when I tried to get out of bed, or I could not feel my fingers pick up a glass.  Doctors did not know what it was for many months until they tested me for B12 deficiency.  I originally had B12 shots every week for 10 weeks, until my level was normal.  I had the choice of continuing weekly shots, or try sublingual (under the tongue) B12 tablets.  I chose the daily tablets. There is always a chance that the tablets will not work, but they have for me. I purchase them at a local health food store, since they are not available at grocery stores. Numbness and tingling in my limbs finally dissipated.  I take them 3 times a week now. Once you get your B12 level back to normal, you may be able to try the sublingual tablets. Consult with your doctor.  Good luck!

cfdr

I'm still on the monthly shots, and they seem to be working. I went to an integrative medicine physician who suggested d-ribose and coenzyme Q10 and ginseng for the cancer-related fatigue, and that seems to have helped. I can exercise now without it making me *more* tired.

LW122713

I was diagnosed just a few months prior to receiving the BC diagnosis. I too was exhausted, and had balance issues, peripheral neuropathy, nerve damage in both arms and a leg and short term memory loss from the B12 deficiency. I have been giving myself injections of 1000 mcg of cyanocobalamin weekly. Does seem to help. Also was diagnosed with a vitamin D deficiency at the same time and am taking 50,000 units orally every two weeks. I have often wondered now if it is all connected somehow.

cfdr

How long will you be on the weekly shots? Will you eventually cut back to monthly?

LW122713

My Neuro didn't say. The plan was to do follow up bloodwork in 6 mos that would be in May which will be during my chemo treatments. Who knows how everything will look then. I see that you too cfdr are from NC. I'm from the Winston/GSO area.

cfdr

I'm in Durham, going to Duke for treatment. Have you heard of Camp Bluebird?  It's a "cancer camp" sponsored by Mission Hospital in Asheville but some of the medical professionals come from the Winston area. Very affordable ($40!) and worthwhile couple of days in the mountains.

LW122713

I was on the verge of going to Duke also after I had a bad experience with a MO here. I did finally find help and guidance from an MO that I trusted without making that drive. I hadn't heard of camp bluebird and had no clue there was anything like it so close by.

KerryW1

hi ladies,

I'm Kerry, I live in Adelaide South Australia.

I stumbled across this in looking for answers to another question, and wondering if two conditions were connected

I have PA. I was born with it and also acquired it when I had my Gall Bladder removed.

It is for life. As are the injections.
If one has true PA and not just a deficiency, no amount of oral B12 or multi B will help, the body cannot absorb it... it lacks Intrinsic Factor
I have also had a couple of scares with breast tissue looking like it was not going to play nice, I have a family history of this and other female cancers.

I have to have 3 shots a week and sometimes I need to top up with sub-lingual spray in order to remain reasonably 'normal'.. anyone with PA will understand that

One thing I wanted to mention, and I can find the readings I got this information from if you wish, is that when anyone is undergoing Chemo, they should be on B12 shots, because the B12 helps with the DNA repair. I have a friend who is now terminal with Cancer through her major organs and I wonder if somehow she might have been helped a little by this piece of information, but I wonder if her specialist would have listened to me or even believed me

Unfortunately, and again those with PA will know this, many doctors do not believe that a simple vitamin can be so important to the body, and will either dismiss it entirely or will not give the shots when the patient themselves needs them...so I wonder if there are many other specialists who will believe anyone going through Chemo if they insisted on getting B12 shots through the whole chemo process

Many doctors, mine as well.. believe that there is such a thing as 'too much B12' RUBBISH....
Please check into this, I hope that this will help you go through your chemo sessions a lot easier, becasue from what I have read, it helps.

I still get very fatigued at times, my memory is not as good as it was, but better than it is if I drop even one shot a week, I also have a condition known as Grierson-Gopalan Syndrome (Burning Feet Syndrome). I get the 'sighs' at times still and restful sleep .. hmmm what is that again? is not something I enjoy any more.

Life is ok for me though, I was diagnosed back in 2008 and started on shots, I ahve been proactive and a very big thorn in the sides of many doctors in getting the treatment that suits my body, not the statistical body..

so please get your levels checked. if I can get a link to work on here, these are a few youtube videos I recommend people watch if they want to find out about PA

https://www.youtube.com/watch?v=klobLSxv6i0

http://www.youtube.com/watch?v=BvEizypoyO0&feature...

https://www.youtube.com/watch?v=SNbotEpRT4k

thanks for taking the time to read this small novel and I would hope I can get to know many of you as time goes by.

I am by no means an expert, I am not a doctor, I live with this auto immune disease in my body every day. If that makes me an expert on the subject then I guess I am

cfdr

Hi Kerry,

What is the typical protocol in Australia? In the U.S. it is 1000mcg of cyanocobalamin every month, in the U.K. it is hydrocobalamin every 3 months. I've read that in Canada they treat with oral megadoses rather than injections, which doesn't make sense to me.

For a while I convinced my doctor to give me shots every 2 weeks. I've stepped back to monthly, and seem to be OK. I was also taking daily sublinguals (which she swore would not help), and when the bottle ran out I didn't refill it. Boy was that a mistake! I learned the hard way that they really were helping. So now I take 6000mcg sublingual every morning...and top off in the afternoon if I feel the need. 

My husband, who is not a medical professional, has agreed to learn how to give the injections. The nurse demonstrated, the doctor gave us 6 syringes, and a friend who is a nurse agreed to supervise him the first couple of times. But there is an injectable cyanacobalamin shortage in the U.S., so we haven't been able to get any! So I'm back to the doc for every shot, at $38 a pop until I meet my insurance deductible.

Sometimes I'm fatigued even after my shot...that's where it gets difficult to tell what is PA and what is PCRF (persistent cancer-related fatigue). I actually have a prescription for methylphenidate (ritalin) now, and even thought it makes me jittery it helps me get through the day with energy and focus. Pre-cancer I was the exact opposite of someone with an attention deficit, now I really have sympathy for people who suffer from ADD. 

Thanks for sharing. I'll take a look at the videos. I also joined the Pernicious Anaemia Society (U.K.-based, but they have online forums) and that has been a wealth of information.

MarifromPA

I have been watching my blood counts since day one ... this is a result of the chemo .... not some separate thing