Haemochromotosis at 60 years of age

Hi Veloman. Sorry to hear about the diagnosis and the arthritis, lack of energy. I'm Mike, was diagnosed last June, ferritin level of 2000...had bad joint pain in my right hand. Have had weekly venesections since then..my level is now 275. Not long to go now to level 50. I'm 53 years old.

The symptoms will persist until you start your venesections. In time your energy levels should return, and hopefully you'll find real improvement with the pain...though this does vary from person to person. I certainly have more energy now, and the hand pain is now very minimal.

What was your ferritin level? Any other symptoms with the liver or other organs?

The treatments really will help to some extent, and your energy levels certainly should come back...even after just a few.

There is so much more to advise with diet etc...so please do keep in touch. I wish you well with the treatment....

From my experience, been deironed for 16 years now, 9 years prior undiagnosed with severe symptoms, the fatigue and pain never went away.   With some people the fatigue does go away with venesections.  I depends on the severity on how long that takes.  I had to give up work as I only last a few hours a day, I cannot keep up with all the necessaries.

Haemochromatosis arthritis experts tell us that the arthritis pain never gets better.  If you have a sympathetic doctor who will give you a certificate for a few weeks, take it by all means.  It depends on how much your dr knows about haemochromatosis.   You might have to educate him.

Having said that, try to keep moving - you might have to get a stationery bike, as being on sick leave and being seen riding a bike outside might not go together.

Eliminate sugar and starches from your diet, it reduces fatty liver and may increase your reduction of ferritin, as well as saving your pancreas.  It might also help with the joint problem.  Eat a normal serving of meat/protein and lots of green vegetables.  Drink tea, coffee, milk with meals to help reduce the uptake of iron, eat calcium products, like cheese, yoghurt at end of meals.  A small glass of red wine with dinner also helps, with the emphasis on small and singular.

Avoid high vit c products with meals, e.g. juice, supplements.  I must have my vit c tablet each day to stay free from colds, sore throats, etc. but I have it last thing at night when hopefully, my stomach has emptied.  It is mostly at the duodenal, that excess iron is absorbed from food.  Antioxidents are important.

This is my last post for more than a month as I am going overseas and I don't expect to be contributing for a while.  Letting you know, in case you have further questions and I cannot answer.  However, I am sure others experienced with HH will do so.

 

I have hemochromatosis, found out about 2 years ago. I am deironed and I feel better now. The arthritis did not go away though, but the other symptoms did. I was 1675 and now I am 22. I was very tired during the deironing process and my doctor did write me about for a month. It is a lot to get deironed weekly and your body has to replace the blood you had taken out.

I found that if I did not dehydrate myself after the venesection, I was so sore, then I started drinking a lot before and after and I bounced back to my old self easier. I started to feel better once I was in the 500's.

Besides arthritis, my biggest complaint was how hot I always was, very uncomfortable. I have more energy now for sure.

You should ask your doctor for time off, you deserve it!

Hi.

I definitely agree with hydrating yourself before a venesection. I drink a good few pints of water hours before. The blood really does flow easily when your hydrated. I always drink a glass during the procedure as well, and I treat myself to a chocolate bar..thought the nurses always try to "steal'' my chocolate from me. For the first month or so, I did feel so very drained the following morning, and sometimes was unable to go into work. My employer has been very understanding...and still let me shoot off every Wednesday lunchtime to go for my venesection. I actually enjoy going, as the nurses are wonderful, and I get to meet and chat with other iron men and women.

Hi, I am actually a Physician myself, an American anesthesiologist, retired due to the arthritis.  Unfortunately, the arthritis has nothing to do with your iron levels.  You do need to treat your iron levels so you don't destroy your liver, heart, etc, but it won't help the arthritis or it's progression one bit.  From my studies the problem seems to be an increased inflammation going on in our tissues.  There is very little in the way of studies going on.  In fact, I have found only a single clinical trial going on, in Rennes, France that is trying out a rheumatoid arthritis drug on us.  However, it's one of those drugs that works by shutting down your immune system, much like Stelara does.  It's not something you want to be on if you don't have to be.  I have been treating my fairly severe pain with nerve blocks for the back/spinal pain.  I am on narcotics, but I recently discovered anticonvulsants, specifically, topomax, is really good at centrally shutting down pain signals.  So your joints may be shouting at your brain, but your brain stops hearing them.  I also have had a lot of muscle cramping, also a common occurence in hemochromatosis patients.  The best relaxant drug I've found is tizanadine at 4 mg three times a day.  I also got myself a TENS machine to use on any painful area along with some massage blocks to put on tender points.  You really have to hit this with a combined approach or you will find yourself slowly retreating to your couch!  And, as I said, doctors just aren't very well informed on this aspect of our disease.  Hope this helps.

Lynda