Hi Michaelvi. I am so glad you are doing well. Its great to meet someone else with the same antibody. I wish you well and hope you continue to be stable and well. Best wishes. Autumm

Autumm, I will see my doctor tomorrow, so will ask him about JO-1 antibody. Just finished reading about interstitial lung disease on the Mayo Clinic website. It lists medications that cause it, and MTX is the first one they list. So I'm wondering why your doctor has you take it. I stopped taking it last fall because of the unproductive dry cough I developed while taking it. That has since disappeared. The scarring in the lungs cannot be reversed, but can be slowed down with certain medications.

Hi Plugginton. If you read my post above I have written that my Rheumatologist here in London does not give MTX to those of us with lung issues. I have always taken Imuran and doing very well on it. Glad your cough is better and thank you for your concern. Autumm

Hi Plugginton
Most people with JO-1 can't tolerate MTX beacuse it cause them respiration problems. I guess i am lucky that i can tolerate MTX.

MTX taken for long periods will cause lung and kidney problems. In the kidneys, MTX can cause cystitis according to my gastroenterologist. By the time a liver or kidney problem comes up in the blood work, then the problem is in progress. MTX also hangs around in the body long after the medication is stopped.

I think the bigger issue for all of us is the damage of Prednisone when taken for long periods. I can not get off steroids without a flare. Someone needs to manufacture some medications that can be taken for long periods without causing secondary organ damage - this is a problem with ALL DMARDs and steroids.

Hello all. Sorry that I have not been on lately, I have been going back and forth with my drugs and have no idea at this time what is causing what. My new primaryhas been changing up my diabetes meds so I am not sure if it is those meds or my PM meds that are giving stomach cramps and constipations. I am so use to the constipation and my need to relieve myself that I don;t even discuss it now. I went in to see her last week, I believe and she told me that I don't need to come in when I have these problems, that I can just call her at the office. Now I like that. It saves me a little money. On the other hand, my HR calle dme and informed me that they were laying me of from my job and that my benefits would be ending. I wasn't upset as I knew that I would not be able to return to them anyway. They called me on Feb 13th, a nice valentines gift. I didn't realize that my doctor had put down the 16th as my return to work date until my daughter got in from work, but I was fine with it. I was still waiting to hear from my insurance company regarding my short term disability and had not received pay. I have been of work since Jan16th and on tuesday with the blessing of the lord, the insurance company called and informed me that they had approved my disability. This disease is a no winner. My nerve damage has goten worse. Some days, in fact many days the is going back up my thighs and bpth legs are feeling it. My numbness is now in both hands and my memory loss has also increased thanks to the predinose or something. I seem to have increased the number of medications that I am taking and will probably have a change when I go back to the new neurologist on the 12th since my MEG shows that I am worse and I knew that myself before the test. I just want to know wha tthe EMG showed but of course I have to wait until I can see the doctor as if she can't tell me over the telephone and then we will have more to discuss when I come in, as I will have looked up things online. Why do we have to stay in the dark until we go in as if we are not able to handle whatever they plan to tell us. I have been dealing with this since 2011, I think that I can deal with it by now.

I think that I am venting too much and I did nor plan to do that when I started posting to your question. Forgive me. I am taking 6/2.5mg pills each Sat. I don't know if they are helping or not. I know that the Cellcept was stop because it took my whote count down to 2.0. So far my white count is fine, but I don't know if MXT has anything to do with it. I hope this helps. We are a wonderful group and I truly appreciate you all. I am not checking my spelling and hope that it is okay.

Hi there Brenda. Good to have news of you. I was sorry to read much of your post but can't help thinking that removing the pressure of having to work can only help you. You have been through so much Brenda and you are always positive. I hope they sort out your Meds for you. Do let us know how it all goes. It's always good to know how you are doing. Best wishes to you. Autumm

Hi Brenda, It is nice to hear from you. This disease is a handful. I know what you mean about doctors keeping you in the dark. It is typical of the medical profession to actually know what is going on and not inform the patient until they absolutely must say something. I do not get the point of why some doctors will wait until the last minute to say something. Waiting does not change the truth when something is going on with the health.

I hope you will see some good improvement. I will put in some prayers for the financial help to come through. Maybe if insurance companies did not have so many employees then they might be able to pay some claims. You are in my prayers. Keep us posted.