3 years and still waiting for remission

[Malok]

Hello everyone. My name is Kevin, I’m 59, and I was diagnosed in Sept 2010. Knowing what I know now I believe my symptoms started in 2007 with what I believed at the time was sunburn on my foot. It progressed into what appeared to be full blown cellulites. As the healing process was taking place I noticed stiffness in my knees after a period of sitting in a chair. A short walk and some Advil would relieve the stiffness and for several months it was just an annoyance. Then the pain in my leg muscles began, slowly at first, but gradually increasing. Walking, stretching, and more and more Advil would help but for only short periods. It would come and go like this for a couple of years. Visits with my Primary Care Physician didn’t result in any significant reasons for why this was happening. A few months before I would be diagnosed things really started to amp up. The joint pain moved into my hands and arms. Some days the pain in my legs would be so severe I could hardly get up from a chair. Fatigue was getting worse. Then in the summer of 2010 I experienced shortness of breath that sent me to the ER and admission to the hospital. A lung x-ray showed spots that appeared like broken glass and I was treated for pneumonia. During my hospital stay at the insistence of my daughter, who is a Nurse Practitioner, I was seen by a Rheumatologist. After explaining the joint and muscle aches and answering a number of questions he sort of casually dismissed them and left the room. Three weeks later round two of a hospital stay with what was again thought to pneumonia but this time more investigation into what was causing my issues. A different Rheumatologist who showed a little more interest saw me and scheduled a follow-up visit in her office for a couple of weeks later. The day after I was discharged from the hospital I ended up admitted again for a skin infection on my arm, thought to be a reaction from the pneumonia shot that I had received when discharged. The day before my visit with the Rheumatologist I saw my PCP for a follow-up for my pneumonia and he told me he thought that he had figured out what I had. He mentioned Wegeners and told me to have the Rheumatologist include an ANCA blood test. When I told her about what my PCP had suggested combined with my telling her about having some bleeding in my nose she included the ANCA. About two weeks later I experienced severe vertigo. It was so bad that I could barely get off the floor. My wife took me to my PCP and when he saw me he turned as white as his lab coat. Back to the ER in an ambulance from his office. While there, the results of my ANCA came back and the numbers were off the chart. I was immediately put on 30mg of prednisone which was later increased to 60mg. Visits with a Kidney specialist who biopsied my kidneys confirmed the diagnosis. He is now managing my illness. Three rounds of chemo followed by 100mg per day of imuran along with the prednisone have returned my relative health back to me. After nearly three years however I have not gone into remission. I’m down to 5mg/day of prednisone and still waiting for the day when I can be done with it.

[renidrag]

How is the quality of life now?

[mishb]

Hi Kevin and welcome to the forum.

It was August, 2010 when I was finally diagnosed and I also am still on meds.....down to 3mg of pred, 20mg of MTX and 400mg of plaquenil (for the joint pain).
Thank goodness for your PCP.......we are very thankfully for the good ones, but there are others that just put you in the too hard basket.

I'm not sure that remission is possible for some people but a full life (with medications) is.
I look at it this way - if I had a heart condition, or epilepsy, or diabetes, I would probably not even be thinking of getting off my medications......you know, the ones that are helping me stay on this planet.....therefore, I am not in such a hurry to be off these ones. Yes they can cause other problems, but so can they all.
Am I in denial - I don't think so. I'm just being logical and happy with the fact that I can still work, still get around and still look on the bright side.

I hope, Kevin, that one day they can find a treatment for us, that will eventually lead to our remission.

Take Care

[Dirty Don]

Hi Kevin, welcome to 'the' club...hmmm. Anyway, sounds like you have been the 'normal' route many of us have traveled. Sick, don't know why, no one knows why, then, voila, some good samaritan doc comes along and says 'my son, you're incurably sick'! What! So, sounds you have things under control though...good on you. As for remission...it's a hope and miss thing...we hope and the drugs miss...but think of where you've been and be glad! I know, not easy. Some of us are/have been lucky and are headed toward a remission of sorts, so we brag about it, but we know the realities are, at this time, no cures, but lots of hope. The mere fact that your pred is being reduced and you're still feeling better is a great sign. Hang tough, keep hoping, but know the realities of this subversive little disease. Best to you.

[Malok]

To answer renidrag it's as if I am disease free. Once on the prednisone my pain disappeared in about 3 weeks.I was fortunate with having lung and kidney involvement but no permanent damage. I was able to return to work as a firefighter within a couple of months of diagnosis.

[Debbie C]

Hi Malok, I was dxed back in July 2010 and went thru the usual drugs at first and my reumy tried putting me on imuran, mtx,cellcept and a rtx infusion ,and I couldn't take any of them...bad side effects.I have been on 5mg of pred for almost a year and was in remission until a couple of months ago they found 4 small nodules on my lungs. So just when you think all is good ....WHAM. But I feel good,I just got back from Fla. where my sister and I would walk about 3 miles a day on the beach. But my reumy at Cleveland Clinic said I'll probably be on pred the rest of my life since I can't take anything else. But I go see him the end of July so who knows what he'll try next.Like Michelle said some of us my never get into remission and once there it can come back at the drop of a hat.

[drz]

To answer renidrag it's as if I am disease free. Once on the prednisone my pain disappeared in about 3 weeks.I was fortunate with having lung and kidney involvement but no permanent damage. I was able to return to work as a firefighter within a couple of months of diagnosis.

Wow, that is great and really fortunate for you. I wonder how your doctors define remission? Do they mean you have to be drug free? Many of us are lucky to have a drug induced remission and are thankful for our recovery. We may still have residual symptoms but are still considered in remission and kept there by our maintenance drugs with some minor flares or increases in our residual symptoms. My maintenance drugs are 175 mg of generic Imuran and 5 mg of prednisone along with several others. I expect to be on them a long time, hopefully a very long time.

[Alysia]

Hi Kevin. welcome to the forum :hug3:
Im 5 years dx and there isnt remission yet :crying:
but dont stop hoping !
now that I got RTX, Im counting the days, waiting for it "to clear" symptoms.
all those years, pred is my best friend :love: love from first sight, when it saved my life.
WG is like "Hydra", that mythological monster, that had many heads. for each head cut off it grew 2 more... so we must be Heracles...:wink1:

[Alysia]

Hi Malok, I was dxed back in July 2010 and went thru the usual drugs at first and my reumy tried putting me on imuran, mtx,cellcept and a rtx infusion ,and I couldn't take any of them...bad side effects.I have been on 5mg of pred for almost a year and was in remission until a couple of months ago they found 4 small nodules on my lungs. So just when you think all is good ....WHAM. But I feel good,I just got back from Fla. where my sister and I would walk about 3 miles a day on the beach. But my reumy at Cleveland Clinic said I'll probably be on pred the rest of my life since I can't take anything else. But I go see him the end of July so who knows what he'll try next.Like Michelle said some of us my never get into remission and once there it can come back at the drop of a hat.

Hi. you may try sulfa ? plaquenil ? arava ?
all this are meds that my WG doc prescribe to me.

[Jaha]

Welcome Kevin,

Glad you found us. Sounds like you have been thru alot like most of us. I too am waiting on remission and was finally dx'd Sept 2010 after a long and grulying fight for answers. I am on cellcept,down to 12.5preds and still flare about every 6mos, even with rtx tx's. I haven't been on the forum for a while, but I'm sure glad I caught your post. I have been really down about the same thing, not achieving remission and am feeling your fears and concerns. Best of luck to you and look forward to having you aboard.

[annekat]

Welcome, Kevin. Everyone has pretty much said it all. But I might add that after two years of successful treatment, I'm still not declared in remission. I'm doing very well and might be considered close to a medicated remission. But I found out this past winter that I still must be on my meds, at the right dosage, to avoid a flare. I have sinus, ear, lung, and joint involvement, and did very well on CTX, and am now on MTX and continuing on pred, but not able to get below 10 or 12mg. a day. Just need to keep working on it, and am feeling pretty well except for getting fatiqued easily. Getting off pred seems to be the hardest thing for a lot of people. We look forward to hearing more from you!