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Joint pain and haemochromatosis

Posted , 4 users are following.

marie86421
marie86421

I have now seen my doctor with regard to my painful thumb and hands.  Various blood tests have been done, including rheumatoid arthritis and other inflammatory markers and all have come back normal.  I wondered whether it could be gout but that was normal too.  I have been given Naproxen to ease the pain and reduce the inflammation in the thumb. 

This is my third day of taking the medication and I have felt no relief from the pain.  Looking on various forums it seems that the drug does not work for everyone.  My siblings have used this drug and found it to be very effective at relieving the pain within a short time of taking the medication.

I am wondering whether to carry on with the drug, as there are many side affects, especially as I am not getting any relief.  I have been prescribed Omeprazole to alleviate the stomach problems associated with Naproxen. 

If the pain and swelling is due to haemochromatosis, how do I control it and get back to normal? (Tried Ibuprofen gel - did not work)

I am back to my fortnightly venesections of 350ml of blood being drawn and hoping that as I reduce my ferritin things will get better.

 

2 likes, 5 replies

5 Replies

  • sheryl37154
    sheryl37154 marie86421

    Posted

    If you have true Hereditary Haemochromatosis, i.e. 2 faulty genes, e.g. homozygous C282Y, or compound heterozygous C282Y/H63D, and had a delayed diagnosis, unfortunately once arthritis type damage has set in, a specialist in this area at a haemochromatosis conference said it does not get any better.  It may not get any worse as long as you keep up with your venesections and get de-ironed less than 50, or even better <30.  then you may allow it to get a little higher.

    personally, i have found relief using pure emu oil - rubbing it into my affected fingers.  it is so fine it sinks right in to the bone.  pure oil, not cream.

    sorry about that news, and good luck.  then="" you="" may="" allow="" it="" to="" get="" a="" little="" higher.="" personally,="" i="" have="" found="" relief="" using="" pure="" emu="" oil="" -="" rubbing="" it="" into="" my="" affected="" fingers.=""  it="" is="" so="" fine="" it="" sinks="" right="" in="" to="" the="" bone.=""  pure="" oil,="" not="" cream.="" sorry="" about="" that="" news,="" and="" good="">

    personally, i have found relief using pure emu oil - rubbing it into my affected fingers.  it is so fine it sinks right in to the bone.  pure oil, not cream.

    sorry about that news, and good luck.>

    • marie86421
      marie86421 sheryl37154

      Posted

      I don't have HH, I am H63D heterozygous, C282Y negative and heteroygous mutation in the FPN gene (Ferroportin disease) but I guess what you say could pertain to me. 

      My local chemist has mentioned a new gel called Flexiseq gel.  This gel is made up of millions of droplets of fat, called phospholipids, which travel through the skin and tissue, penetrating the joint.  They then coat the cartilage with a protective layer of lubricant, replacing naturally occuring phospholipids which have been ruined by arthritis.

      Perhaps this works in the same way as the emu oil.  As I am in the UK and emu oil could be difficult to source I think I shall try this Flexiseq gel and see what happens.  It is rather expensive though, at £18 a tube.

      I shall report back after I have tried it.

       

    • marie86421
      marie86421 sheryl37154

      Posted

      I have used the Fexiseq gel/cream now for four days and it hasn't really helped.  

      The leaflet states that it gives relief for osteoarthritis - I guess my painful hands can't be due to that.  My thumb is still swollen and sometimes when I can bend the first joint, it feels like it is popping out and then locking.  A sensation that makes me feel queezy.  I have to keep my thumb in a locked position after that.

      Going back to my doctor next week.

    • sheryl37154
      sheryl37154 marie86421

      Posted

      You might be able to find emu oil at an 'expats' shop (like those that sell vegemite and other Australian foods and goods).  I am sure you can buy it online.  Look for a farm in West Australia if you do to be sure to get the real stuff.

      I have heard of a disease that causes joints to overextend with pressure so I don't know if that is happening with you.

    • marie86421
      marie86421 sheryl37154

      Posted

      That's interesting, thank you for mentioning that.  I shall look it up and ask my doctor about it.

       

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