Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hi everyone,
I've recently been diagnosed with hemochromatosis. My iron sats are at 96% and I have severe joint pain (Ferritin at 301, so not too bad there). I'm a registered nurse and it's making it so difficult to move on my unit and I'm only 29. Has anyone had reversal of the joint pain with phlebs? My ankles, knees, hips and fingers and sometimes wrists are killing me. I've had one phleb and the pain in my fingers went away, mental fog cleared a bit, and I do have more energy. But after a few days, the finger pain came back. This is debilitating and I'm afraid of what it's going to do to my career. Thank you!
Also-- if you have the joint pain, what helps? Ibuprofen takes the edge off a bit, but that's about it. Also, I have a ridiculously high pain tolerance so it's saying something that this is affecting me so much.
I need encouragement!
Lizzy
I've recently been diagnosed with hemochromatosis. My iron sats are at 96% and I have severe joint pain (Ferritin at 301, so not too bad there). I'm a registered nurse and it's making it so difficult to move on my unit and I'm only 29. Has anyone had reversal of the joint pain with phlebs? My ankles, knees, hips and fingers and sometimes wrists are killing me. I've had one phleb and the pain in my fingers went away, mental fog cleared a bit, and I do have more energy. But after a few days, the finger pain came back. This is debilitating and I'm afraid of what it's going to do to my career. Thank you!
Also-- if you have the joint pain, what helps? Ibuprofen takes the edge off a bit, but that's about it. Also, I have a ridiculously high pain tolerance so it's saying something that this is affecting me so much.
I need encouragement!
Lizzy
I have just been diagnosed with hemochromatosis and am learning as I go.
I have chronic pain in my back and hips with a lot of inflammation and stiffness in my joints. I had my first phleb and while I felt tired the first couple of days, now that I am into day 4, I am feeling more energetic and clear minded than I have in years!
I take 200mg of Celebrex every day for my chronic pain and still my back pain is bad. It's expensive, but it seems to work the best for me.
I understand your worries about your job; I am looking for work at age 51 and worry that I do not have the energy to work full time, yet I need to start earning money ASAP! (I went through a bad divorce and just earned a 2 year degree after having been a stay-at-home mom for over 20 years, but that's a story for another support group!)
While I'm no doctor I am surprised you have such bad joint pain at such low iron levels (though it's not unknown). I think you need to find out exactly what type of arthritis (assuming arthritis is the cause and not something else) you have or if it's something like chondrocalcinosis. As a nurse, I'm sure I don't have to tell you that your arthritis may be completely unconnected to your HH.
Unfortunately I can't offer you much encouragement in as much that phlebs will improve your joint pain, though you may be in the lucky 10% of people who do see an improvement. In fact more people, about 34%, find their joint pain becomes worse. This is probably due to the fact that collagen seems to be sensitive to changes in iron levels. As iron is released from the joints as free radicals and probably then causes damage to the joint. but it's not fully understood. This is one reason why I take a strong antioxidant in the hope it prevents free radical damage (though the study below suggested there may not be a connection). I also take glucosamine & chondroitin to supply the body with the building blocks of cartilage, particularly important I believe as the study below showed that phlebs increased the turnover of collagen in joints. For pain I take fish oil. Though I have relatively mild arthritis (it only became apparent when i started phlebs) so it probably won't help your more severe pain, at least in the short term. When choosing a pain killer make sure it is not one that blocks the bodies natural signalling process as this means your body will not activate it's repair mechanisms & your joints will will have no chance of repair. Sorry I can't recall which class of pain meds it was that did this, possibly it was NSAIDs.
This study is about collagen & iron sensitivity
http://rheumatology.oxfordjournals.org/content/early/2010/01/22/rheumatology.kep429.full.pdf
I have just scanned the study again and suddenly thought, "WHy aren't I taking a callogen supplement?" A very brief search turned up this study
http://www.medsci.org/v06p0312.htm
Which suggests collagen would be a better alternative to glucosamine & chondroitin, though taking both might be even more effective!
Think I might have to get some!
Oh and Cissus is popular among weight lifters to reduce joint soreness,...... I need to get some again!
http://www.ncbi.nlm.nih.gov/pubmed/24113700
All the best
FF
quote "may reduce ligament, tendon, and cartilage healing" from
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3011108/
ALSO they should probably be avoided by people with HH as our liver is already under stress due to iron. (Though the OP may be OK as she has relatively low iron levels. As always your doctors advice is the one to follow .... not mine!).
So sorry to hear of your issues, and at suc a youngage.
I am 58 and was diagnosed last year after having a chest infection that would not clear for about three months.
I too have finger Hip, ankle knee pains, after my first phleb the hip pain went away and I thought that it had gone for good, but it has come back with a vengence, my iron sats wer origionally89% and Ferrittin 700. I am now about to go onto maintenence but have just had to have MRI scans on both hips, my pelvis and lower back and am waiting for the results, I too have always been told that I have a high pain threshold,maybe thats another HH thing.
My walking painful at the moment and I find it tiring to walk too far, walking is like wading through water at the moment.
I have tried several topical creams on my hip to try and easeteh pain, asit sometimes wakes me in the night.
Ibuprofen cream seems to help, and TRAXM cream also helps.
I am hoping to get my MRI results later this month, and will then see what they recommend.....
I must have reached a tipping point with HH as about a year ago I felt relativly normal and could walk without any trouble, although my wif and her family have said that I always walked funny?
Take care have a better 2015.
Regards
Steve
My ferritin was at 950 when first diagnosed April 2013. Had weekly plebs and it went up to 1350 in June 2013 as the iron started coming out of my tissues. By Jan 2014 it finally went down to 50. But the joint pain and arthritis was still bad - only slightly better. Somebody suggested I look into chelation as I also had atrial fibrillation and the idea was that iron could be in my heart tissue and that might help get it out.
I had a urine metals analysis with the first chelation and it showed that the chelation was taking out lead. So I had 10, once a week then did another urine analysis. It showed that now other metals such as cadmium, mercury and others were coming out and by that time I also noticed that the arthritis was getting better.
Now, I've had 30 EDTA (IV) chelation treatments and I can say the arthritis and afib are WAY better. It costs $105 each time (I'm in Canada), a naturopath I found does it and if you get a urine analysis done also, that is an extra $100. It was totally worth it as far as I'm concerned.
One other comment about joint pain, is that I found that I am gluten intolerant. If I eat anything with gluten in it, even oatmeal, my ankles hurt so bad the next day, I almost need a walker. If I stay away from all grains, I get better again after 3 days.