Kikuchi-Fujimoto Survival Guide

If like me you’ve been lucky enough to be diagnosed with Kikuchi-Fujimoto Disease aka Histiocytic Necrotizing Lymphadenitis, not cancer, you’ll no doubt have been told that it’s extremely rare. Your own doctor might not be able to tell you much about it, other than it being benign and self-limiting. You may have Googled for it and still not found much, but if you found this post please drop me a comment! Below I’ve listed a number of things that I hope will help you cope with some aspects of the disease. The disease may impact you in other ways, if so please get in touch as finding others with the disease will be very hard, but you shouldn’t feel like your the only person on the planet with it.

The disease

  • The disease was discovered by two Japanese scientists, Kikuchi and Fujimoto, hence its name. Kukuchi is an alternate translation, but less popular.
  • As your doctor or specialist will have hopefully told you it’s a benign (non-cancerous), self limiting disease. It can take a long time for the disease to burn itself out, anything from weeks to months, I’m told 4-5 months it typical, 6 months or longer is unusual.
  • It’s suspected to be an overreaction of the immune system to a virus, possibly a response to one of the most common human viruses, the Epstein-Barr virus.
  • Unfortunately due to the nature of the disease there are no blood tests to confirm its presence. A biopsy, the removal and examination of a lymph node under the microscope, is the only option. I had a biopsy near the groin under local anesthetic, I’d not recommend local anesthetic unless you’re okay with hospitals, the smells and a fair degree of discomfort as the operation will not be quick if done properly.
  • There are no magic cures, although steroids may be given as a very last resort if the disease lasts many months.
  • It occurs more in Asia and typically in women around 30 years old. (I’m a 41 year old male in the UK.)
  • As the lymphatic system is your immune system you’ll be more open to catching other viruses. Limit your contact with others if possible and take precautions to reduce chances of further infection. As viruses can enter the system through the eyes wearing glasses can help. I had some Snowbee “Prestige” fly fishing glasses from a holiday a few years ago. They’re ideal as they evolved from a Ski design and have deep, close fitting lens frames.

Moral and support

  • Keep in mind that the disease has an excellent survival rate compared to Lymphoma.
  • Stay positive, be happy to be a statistic. Your condition may have initially been reported as suspected cancer – Lymphoma, confirmed by biopsy to be KFD.
  • You’re a lucky one in a very small number to be told you don’t have cancer. You had a higher chance of being dealt the Ace of Hearts from a deck of cards.
  • Don’t think about the things you’re missing out on, keep a “Looking forward to” list. You’ll be over it soon enough.
  • Keep yourself mentally active as much as possible. Reading, writing, finding the best tracks in your record collection, anything to keep yourself from getting into a depressed state.
  • If your partner was with you when lymphoma was given as an initial diagnoses they will have mentally prepared for the worst. On hearing that it’s a not cancer but a disease you’ll recover from, your partner may switch to the other extreme thinking “They’re okay, nothing is wrong, they’re not going to die”. You may then find support from your partner drops dramatically. A doctor has explained this as a normal reaction in these circumstances, so don’t take it too personally.

Fatigue, sleep and exercise

  • You may find that your body goes through regular cycles of fatigue, tiredness and feeling ill. I’m told by Professor Linch at UCL that it’s likely to be down to high levels of Interferons and Interleukin-6 that the immune system is pumping into the blood stream.When it’s at its worst or you’re feeling tired don’t fight it, rest, fighting the disease may make your recover longer.
  • At it’s worst the fatigue may appear constant. Over time the cycles should become longer and the fatigue less extreme. On really bad days there may be nothing you can do but rest. On days where the fatigue isn’t as extreme try to carefully balance rest and movement, you may be able to slow the pumping of the chemicals into the blood stream and make your day more tolerable.
  • Try and keep to normal sleeping hours, setting an alarm to wake you in the morning. If you then need more sleep during the day take a nap. This will help keep your body clock correct for your return to normal life.
  • The lymphatic system is pumped by muscle movement. It’s important to keep getting some exercise so try and walk as far as you can each day without tiring. This will also help reduce muscle atrophy. The down side is that the exercise will pump the chemicals into the blood stream, so limit things when needed.
  • If you don’t have any family or friends to give you support, plan your rest and exercise around things you must do, like visiting your doctor, the chemist or food shopping.

Drugs & Foods

  • You may be prescribed Ibuprofen and Paracetamol to help reduce the side effects of the fatigue. If you find it brings on acid reflux ask your doctor about Omeprazole or equivalent natural remedies.
  • There may be a lot of swelling around the biopsy site. Unprocessed pineapple juice is natures best anti-inflammatory.
  • Alcohol such as white wine may help take the edge of extreme fatigue, but it’s not recommended if you’re on pain killers other than aspirin, ibuprofen or paracetamol as mixing alcohol and some pain killers can cause liver damage. Please check with your doctor if you feel the need to drink still, I’m sure you wouldn’t want to swap one health problem for another.

Work

  • Even with an understanding employer keep in mind that they will want medial certificates from your doctor confirming that you’re unfit for work. Try to ensure there are no gaps between them, and keep them updated if the notes need to be extended. Otherwise they’ll be expecting you back when the last note expires.
  • Although you’ll no doubt want to return to work as soon as possible, try and ensure you’re properly recovered before you do. If you find yourself trying to work through the fatigue and the mental fog it can bring, will you really be helping yourself or your employer? You may cause more problems, both with your work and health.
  • If you really must do something for the office try and negotiate things that can be picked up and put down easily. When your suffering, the stress of working to a deadline, real or implied, won’t do you any good – you’ll find yourself working when you should be resting.
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