AIH - Breathing problems, back and leg pain

[Geri__0]

  I have had problems with shortness of breath since before I was diagnosed with AIH however, it has never been severe.  Now the problems are almost debilitating though more severe on some days than on others.  Even slight exertion leaves me gasping for breath but a brief rest seems to bring me back to normal.  I've been through extensive pulmonary testing at a large medical center in California and all possibilities like emphysema (I'm an ex-smoker) asthma and allergies have apparently been eliminated.  In fact, my pulmonary function tests have been fairly good for my age.  On the other hand, earlier this year during a pre-transplant evaluation, a spot was found on one lung.  I had a lung biopsy and the results were non-conclusive.  A follow up x-ray showed that the spot had disappeared though it had been present in two earlier x-rays just a couple of months prior.  Now, it's concluded that I might have a heart condition that didn't show up during an exercise EKG.  I have been told I should have an angiogram, which I've resisted so far.  I simply don't want to go through that if I can help it and I suspect that the problem is related to my liver disease and perhaps aggravated by the Prednisone and Imuran I'm taking, plus the added weight from fluid retention.  I'd like to know if respiratory problems are a known effect of liver disease or possibly otherwise related.
  I have also had severe back and leg pain, with my feet feeling like they are throbbing, tingling and even burning.  This is new since last November and is sometimes worse than other times.  The back pain appears to be muscle spasm and you can feel the hard, knotted area in my back when it's bothering me.  The back pain is brought on by exertion but the leg pain seems to have no specific cause.  I also am curious if this is a known liver related problem?
  I've been through (too many) tests and there have been no conclusions.  If I knew for sure that these are common side effects, perhaps I could discuss the problems more intelligently with my doctors.
  Thank you,
  Geri

[HFHSM.D.-D.M.]

_
Dear Gerri:
Wow, you pose a tough series of questions.  Shortness of breath is a problem with many so causes that it’s tough to be helpful without a lot of information.  Let me see what I can do.
One of the first questions we always ask is whether you really are having difficulty breathing.  Sometimes people feel short of breath but there lungs are working reasonably well.  You mentioned that your pulmonary function tests are actually pretty good.  I wonder if your blood oxygen levels are all right.  I suspect they have been checked.  If the lung function is pretty good, we look for other causes of shortness of breath and these can include heart problems, anemia, poor physical conditioning including obesity and a wide variety of medical problems including infections.
We sometimes do see lung problems in people in your situation.  Lung problems can be related to liver disease, specifically to your autoimmune hepatitis, or side effects of your medications.  Moreover, as you noted, it could be entirely unrelated to any of those problems.  You mentioned that you are a non-smoker and that your physicians think you may have heart problems.  
Let’s work through some of these possibilities.  Autoimmune hepatitis is associated with a variety of other autoimmune problems.  One of the most common ones is thyroid abnormalities.  However, some of the autoimmune problems can involve the lungs.  In addition, advanced liver disease (regardless of it’s cause) can be associated with lung problems such as pulmonary hypertension.  Your physicians will know to look for these problems.  Finally the prednisone, when used for long periods of times, can cause problems like hypertension and diabetes which, if not well controlled, can contribute to heart problems and poor health, in general.
The most important thing is to have physicians who are prepared to patiently work through the possibilities and explain what they’re thinking.  It sounds like you have that.  The same is true for your back and foot problems. I hope this information is helpful to you. Please let us know of additional questions or information.  You can always contact us directly at Henry Ford at [phone].  If you are in the Detroit area, we would always welcome to come see us.  We have a very active group of liver specialists and see many patients with autoimmune hepatitis and  we also have a very active liver transplant program.
This response is being provided for general informational purposes only and should not be considered medical advice or consultation.  Always check with your personal physician when you have a question pertaining to your health.