Just Diagnosed With EF

I just left my rhemy today, she wants to start methotrexate im very hesitant my hair is very thin already and with the added side affect of methotrexate being hair loss (among others) im not so excited. She was very honest and with very little information the only known drug of chose so far is pred which I am currently taking now at 60 mg as i said before i have been lucky enough to loose weight on pred due to swelling, but the stiffness just drives me up the wall. My hands still have very little range of motion does physical therapy really work? As far as plaquenil my doctor insured that would not work with this disease so i would look in to a change if you can. I have been reading about AVARA but that could also cause hair loss.

Im 31 just diagnosed in texas on pred 40 mg. I actuallay lost 30 lbs worth of swelling my legs arms and hands were affected. I still have the claw curve and stiffness in the morning more on my legs. One thing i hope and pray for both of us is that it goes away on its own. The tightness is really annoying i had to quit my job because i couldnt move my hands that has been a big burden. I was wondering if there is a medicine out there to act like a muscle relaxer thats what i feel i need. I feel like the increadible hulk that cant relax.

I am a 39 year old male, and was diagnosed in December of last year...my disease progressed quickly and mostly affected my hands, wrists, fingers, shins and ankles...I was pushed around the system before they figured it out, so I did everything I could to combat it...I took large doses of omega 3 pills for inflammation, and ate foods with turmeric, Ginger and tried to avoid sugar and salt...now that I am diagnosed I started 20mg of prednisone last week...I have noticed some relief, but if I miss taking my omega 3's I really notice a difference! I have been tested and treated for every possible parasite and foreign antibody known...I have 3 doctors, but the infectious disease specialist is the only one he'll bent on finding the trigger and curing it for good...he's pissed that I'm on prednisone, but my Rheumatologist thinks it's the only way....I honestly don't know the answer and have researched until my brain hurt, but something causes this, and if I have to be a guinea pig for the next couple years I will do it just to beat this thing...it really sucks! Anyway, I wish everyone the best of luck...hopefully someone can someday figure this thing out!

Chris

I developed EF in my mid-30s after a viral illness and had similar symptoms to the ones you describe, though my skin thickening was mostly on the arms and chest. It took a couple of years until my doctors found the right treatment for me (azathioprine) after trying quite a few others: prednisone (helped), plaquinil (not sure), methotrexate (didn't work), cyclosporine (helped a bit). I hasten to add that what worked for me may not work for you, but if you feel that a treatment is not working after a few months then you should discuss this with your doctor - the ones that worked for me (cyclosporine and azathiorprine) produced obvious benefits after around two months. A few years later, the disease is mostly gone and I am starting to very slowly withdraw the drugs that I am on, one at a time.



EF _tends_ to get better after a few years. It is a rare disease, but there are a few studies that have followed up to a few hundred patients that you should be able to find online. Unfortunately most of the journals that the studies are in require payment, but you can usually get them for free if you access them through a university library.



I'll leave medical advice to your doctors, but I would recommend that you ask them to consider your bone density if you are on steroids (prednisone or similar). I developed osteoporosis after a few years on prednisone and required treatment for that too.

I was diagnosed in June of this year. I'm a 50 yr old female, athletic and a salsa dance. While the Prednisone helped in the initial stages stages by reducing the swelling and inflammation, the only other thing it has done for me is give me the moonface and make me hungry as heck. My doctor has reduced my dosage from 40 to 20mg and I also take Plaquenil and Methotrexate. My stiffness is in my ankles and wrists. My wrists are definately improving, but my ankles are another story. The skin is so tight most of the times it feels like I'm wearing a vice grip around my ankles and they don't flex. Physical therapy has helped very little as far as I'm concerned with only a 5% range change. The ankles are still black in color and I was told by my dermatologist is is bruising. The skin in both areas look as if I've been burned. I had to ask my doctor to put me on the methotrexate hoping it would stop the overproduction of white blood cells, but I am not sure that's working either. It seems that any activity to the areas make matter worse if even for a short period - so walking, physical therapy, exercising all seem to set me back for days. My best time is at night between 11-4, which yes I am up those hours because I can't get to sleep so I do what I can do during the day. I can atlest now flex my toes.

You've come to the right place! I have met others who suffer from this disease, right here on EP.

I did find a Dr in Texas who has treated several cases. Mine is in Omaha, NE.

I am a 46 year old female who has had this for 30 years! ONe of the first cases diagnosed!

I'm happy to share any information I've found, and I hope you find others here too.