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Iron fist and joint pain


Iron fist and joint pain

Chronic fatigue and joint pain are among the first complaints of a hemochromatosis (HHC) patient but these two symptoms are not specific to HHC, except for one unique characteristic: the iron fist, which is a distinct enlargement of the 2nd and 3rd metacarpophalangeal joints (MCP) or the "knuckles".

According to the Arthritis Foundation, over 50 million Americans have arthritis but each type of arthropathy (joint disease) has clinical and radiographic (x-ray) differences.


Photo courtesy of Dr. Jan Frank Gerstenmaier

On x-ray, hook osteophytes can be seen in patients with osteoarthtitis or calcium pyrophosphate dihydrate crystal deposition disease (CPPD) which is sometimes called pseudo-gout. "Crystal arthropathy is common in hemochromatosis but many CPPD patients do not have hemochromatosis," says arthropathy expert Joanne M. Jordan, MD, MPH of the Thurston Arthritis Research Center. "The hook shape of osteophytes in the MCP joints do not make a diagnosis of hemochromatosis in and of themselves, but they should prompt its evaluation."

An osteophyte is a bony bump sometimes called a bone spur. It is a growth that results from damage or disease of the joint. Margaret Kennedy, who was diagnosed with classic hemochromatosis in the ‘90s, has suffered immeasurably with pain caused by such bone spurs. Hers dominate the small bones of her hands, toes and neck. Multiple surgeries, Botox injections, pain relievers, heat and massage therapy are approaches she has used over the decades to deal with the pain. Dr. Jordan stresses the importance of sleep; Kennedy agrees.

Many HFE patients report that joint pain is more intense when the transferrin-iron saturation percentage (TS%) climbs. They urge their doctors to do a phlebotomy in spite of a normal serum ferritin. Unfortunately this can lead to iron avidity and more pain.

Edouard Bardou-Jacquet and his team of investigators Lainé, Guggenbuhl, Morcet, Jézéquel, Guyader, Moirand, and Deugnier confirm for us in “Worse Outcomes of Patients with HFE Hemochromatosis with Persistent Increases in Transferrin Saturation during Maintenance Therapy” the consequences of iron avidity, a condition where the serum ferritin is within normal limits but the TS% remains persistently elevated. In this journal article Bardou-Jacquet et al. report that individuals with HFE hemochromatosis can experience worse outcomes such as joint pain when the transferrin saturation percentage (TS%) is persistently elevated while the serum ferritin is within normal range.

Correcting iron avidity is not always straightforward. In a few situations, ID worked with HHC patients who were iron avid and their doctors to restore iron balance. With these individuals, their physicians treated their iron avidity with diet strategies used to correct iron deficiency. In one case, it took two years to outpace iron avidity but once iron balance was achieved, the HHC patients did not need a phlebotomy. They continue to keep iron in balance with diet.

Margaret Kennedy shares her life with hemochromatosis: 

Dr. William Palmer did a video for Mayo Clinic on hemochromatosis. Dr. Palmer is one of the experts who reviewed and contributed to our most updated physician handout

Other resources:

McDonnell SM, Preston BL, Jewell SA, et al. (1999). A survey of 2851 patients with hemochromatosis: symptoms and response to treatment. American Journal of Medicine, 106 (6), 619-24. 

Bardou-Jacquet E, Lainé F, Guggenbuhl P, Morcet J, Jézéquel C, Guyader D, Moirand R, Deugnier Y. (2017). Worse outcomes of patients with HFE hemochromatosis with persistent increases in transferrin saturation during maintenance therapy, Clinical Gastroenterology and Hepatology. doi: 10.1016/j.cgh.2016.12.039.

Schumacher HR Jr. (1964). Hemochromatosis and arthritis. Arthritis and Rheumatism, Feb. (7), 41-50.

ArthritisFoundation.org

http://www.rheumatologynetwork.com/articles/identifying-and-managing-hemochromatosis-arthropathy


8 comments (Add your own)

1. Wes Mathers wrote:
Would you please advise me on the diet recommendation.

I have seen many diets on the web but which is the best one.

I live in Australia and feel that Australia is not up with the latest information.

My 2 & 3 fingers onboth hands are now starting to pain and swell and pain plus my neck pains so much I am not getting enough sleep around 2-3 hours in total with many wakes.

I await your reply.
Thank you Wes Mathers

Sun, April 30, 2017 @ 6:15 PM

2. Karina van Lill wrote:
I would also like to know what is the best diet for recommendat.

Mon, May 1, 2017 @ 2:47 AM

3. Todd Madigan wrote:
I would also be very interested in this diet as I'm starting to get more and more swelling and pain in several places.

Mon, May 1, 2017 @ 5:50 AM

4. Neal Prestridge wrote:
Green Tea, Green Tea, Green Tea is the best thing anyone can consume for our high iron levels. A resent University of Penn study showed that the tea binds with the iron and prevents absorption into the body. I'm not talking about a cup here or there, but lots of it. I use it as my cold drink of choice and have it with all meals (exception, I still love my fresh roasted coffee in the AM). I have been able to go 3 months now without needing to get bleed, where I was on a 4 week regiment to maintain <25 Fe. It also has an anti-inflammatory property that may help/prevent in joint pain. I brew mine with fresh ginger and honey for added flavor.

Gout is my main cause of joint pain, so keeping away from things that cause gout and keeping water in the system is important. The question you have to ask yourself, is there something that you eat that causes or sets-off your particular type of Arthritis.

Mon, May 1, 2017 @ 7:28 AM

5. Sylvia Cameron wrote:
I too would be interested in the diet recommendations from your clinic. My ferritin is normal after a year of theraputic phlebotomies (every two weeks), but my joints (thumbs) are getting increasingly painful.

Mon, May 1, 2017 @ 7:54 AM

6. Pam Foye-Needle wrote:
I definitely have a painful bone spur on my neck from old car accidents (whiplash). Do tons of massage, chiro and PT. Our insurance is good about covering.

I have a follow up with my doctor this week, so will bring this info in.

Not sure how the phlebotomy will go as I am pretty thin.

Thank you for this newsletter, kinda overwhelmed with this.

Mon, May 1, 2017 @ 9:38 AM

7. Noreen Maine wrote:
After watching Dr. Palmer's comments on Hemochromatosis, I was surprised when he mentions that men should be tested for the condition with no reference At all to women. I for one am female and have classic hemochromatosis (2 copies of c282Y gene). If you are new to the condition and doing research, his comments would have sounded as though only men can have the condition. I found this very misleading, especially coming from the Mayo Clinic.

Tue, May 2, 2017 @ 7:22 PM

8. Ann Curtis wrote:
I have been seeing Green Tea a lot when it comes to helping lower iron absorption. However. I doctored with a Naturopath a few years ago. He had me drinking 4 cups a green tea/day I did that for almost 2 years. I developed chelitis/stomatitis at the corners of my mouth as well as my lips turned purple and ballooned up, then would peel.

I am actually allergic to green tea. I can drink black tea and a little white tea, but must carefully monitor that I do not drink too much (I can tell by how my lips feel).

Any other recommendations other than Green Tea? I cannot drink cow dairy milk, as I have an IgA casein allergy. I usually drink water with meals, a hot cup of roasted dandelion tea after breakfast, I have a 16 oz cup of iced black tea between breakfast and lunch, and I have a hot cup of chamomile with lavender tea after supper. Anything else I can do?

Wed, May 3, 2017 @ 4:48 PM

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