Anyone familiar with Eosinophilic Fasciitis?

[MAP5]

My dad, who is in his 60s, was diagnosed with Eosinophilic Fasciitis this past June. Apparently this auto immune disease is rare, and they don't know much about it. So far the medication they have tried on my dad has not had any real positive affects. One of which is called prednisone & and another is some type of Chemo pill. He is in a pretty constant pain. Like a burning, and Mostly in his legs, but it has slightly moved to his hands now. There are many other terrifying symptoms from this disease as well.

Is anyone familiar with this disease and some possible treatment options?

Thank you

[Bananas5]

This may help but you probably have all this info already.....

Treatment of eosinophilic fasciitis is directed at eliminating the tissue inflammation and includes aspirin, other anti-inflammatory drugs (NSAIDs), and cortisone. Many patients will improve spontaneously. Others can be afflicted with persistent tissue and joint pain, in addition to thickening of the involved tissues.

For aggressive eosinophilic fasciitis, cortisone medications (such as prednisone and prednisolone) are sometimes initially administered intravenously. Also considered are immune-suppression medications (such as methotrexate [Rheumatrex, Trexall], cyclophosphamide [Cytoxan], and penicillamine [Depen, Cuprimine]). More recently, mycophenolate mofetil (Cellcept) and rituximab (Rituxan) are being studied as potential therapies.

Medical research has shown that immune-suppression drugs, such as methotrexate, can reduce both the immune inflammation and the need for continued cortisone medications.

Eosinophilic fasciitis is treated by pediatricians, internists, dermatologists, and rheumatologists; occasionally, surgeons are consulted for deep biopsies and joint contractures

The outlook for eosinophilic fasciitis is generally good, particularly if treated aggressively and early. Along with medications, physical therapy can be required for optimal rehabilitation. Poor function, however, is not uncommon

x

[MAP5 in reply to Bananas5]

Thank you so much for your reply.

He has been taking fairly high doses of the Prednisone and a lower dose (pill form) of Methotrexate. Neither of these have done very much for him except make him feel crappy. Some of his swelling has gone down, but his limbs are hard as rocks and he still experiences a burning sensation in his legs. Sometimes his hands too. His skin is so tight, shiny and Streched, it looks like he might burst. His skin is cracking on his feet and legs, and other areas (arms, stomach) have a cottage cheese like look.

He will be going for an MRI soon to check his circularity system .... I think? & They are possibly looking at some kind of blood platelet transfusion? Unfortunately I wasnt at his last appointment, so I'm not 100% sure what the next approach is.

Just seems the doctors are having a hard time treating him.

[Bananas5 in reply to MAP5]

Sadly with it being so rare the Doctors have to 'experiment' with his meds. He may gain some relief with one but have side effects with another. This happens with all meds and all conditions. Somewhere is a balance.

x