Wegeners is back!

[im so blessed]

Let me be clear, i have no symptoms, and my blood work is great! Its just that, for the past year i have been off all immunosuppresents. And enjoying it oh so much! First in 17 years of this beast entering my life. You know what happened though? I got really spoiled, and was even able to subconsciencly forget about being a sick person. It was so wonderful! But yesterday it ended. See, i was waiting 9 months to get in to my new rheumy, since she was the dr that cleveland clinic drs recommended here in Pa. So in the meantime i was under cleveland clinics care, at least if problems arose. When i went to them last march for a second opinion, they recommended going on methotrexate right away. I was just sick about it since i had just done rituxan 1 month prior, and my "ex" rheumy was going to let me off all meds until i flared. You know how this issue is very contraversial....and i wanted a break! And i was not facing any issues, so i decided to wait til i got to my new rheumy and see which side of the coin she landed on with the treatment plan. And then it took 9 months to finally get in with her. And so yesterday was HUGE for me...but i didnt go into it with that attitude. I was just excited to finally have a new dr! So this new dr, she did her fellowship at cleveland, trained under the one and only Dr Huffman, and worked there 6 years as an attending. SO i know she knows her stuff. And what do you think happened when she realized i wasnt taking their advice on methotrexate? Ummm...yeah she hit the roof. I didnt even see it coming. I was not even thinking about the fact that she would feel that way (Duh,tho!) she told me 3 times if i dont follow her advice, dont come to her. (In other words she was not very merciful)...i am to start methotrexate today, and come back in 2 weeks. I left her office and cried and cried. I dont really know why, except that i was forced to face the reality of this disease in my life and i had become so used to pretending.I know she is a great dr! Although im hoping a bit more kind at my next visit. And im sorta confused. I asked her the plan in the future, you know, will i ever go off of it? Her response? She doesnt hold a crystal ball, but at this point research is clear, i will be on maitenance drugs the rest of my life! Wait, WHAT???!!!! Research shows???!!!! Research shows every weggie is different, how do you then take a blanket approach to my treatment plan??? And i happen to KNOW several of you who have been drug free, some many years! I dont know...what do you think? I think im still fighting reality, maybe? Thanks guys for listening!!!

[bricky]

Hello! So I understand both sides to the story, yours and the docs. See my rheum wanted me to get off cellcept. I had maybe 1 year before I had a full relapse of symptoms again. And ever since then my rheum has been very hesitant to take me off of them again, which i suppose I am okay with because I really don't want to end up in the hospital again. It could be that your rheum doesn't want to take that approach with you just yet. I know every WG patient is different, but that could be the docs way of doing things until she feels you are ready. I would ask her about it again and see what she says.

[Rose]

Interesting post. My Rheumy has told me from the get go that I will be on drugs for life. According to him the risk is too great of Wegeners returning and doing even more damage to already damaged organs. Also that a flare is usually less aggressive when still on maintenance treatment.

Rose

[John S]

I'm convinced that no one has found a cure for this disease, yet. Wegs is merely arrested. I believe that my eyes and possibly brain as well as other organs, have been permanently damaged already and it will get worse if I don't follow medical advice.

[Donnak06]

I've also been told that I will have to stay on maintenance meds for the rest of my life as I had a flare after 30 years which is quite unusual. They are doing research all the time though and I'm hoping that they will come up with something else soon, who knows.

[im so blessed]

I think im just fighting with reality. I have it in my head that maybe another dr would just let me go til id show signs of active disease..and maybe i could just stay off meds for awhile. But thankyou for your responses, Donnak06 going 30 years with no activity would make it very very hard for me to be convinced i have to be on maintenance drugs for life, so if you can do that, i can do this, right? I do know that the drs are looking out for us, and are doing what they know as best at this point. Maybe it will change at some point. Im thankful for the clinical trials that ppl are a part of, otherwise they would always be following protocol and how would they ever know what might actually work. Who knows where GPA treatment will be in 10, 20, or 30 years from now!

[Alysia]

Most weggies relapse sooner or later when they are off meds. And the relapse might be harder. Like a weggie friend on facebook who was in meds free remission 10 years or so and then relapsed fast and is now on dialysis for life.
I am not going to go meds free. Actually, I cant because my wg is smoldering most of the time, more or less. But even if I could, I wouldnt.

[NatriceRomeo]

I understand the wanting to be a “normal person”-I myself have always wondered what it would be like to not be on medication & basically your life revolving around the disease & drugs. I have been off meds a few times since my diagnosis. The longest time I managed? 4 months. The last time my last rheumatologist said that he would not recommend taking me off meds ever again because you don’t know the damage the disease has done before you show symptoms. But I also have to tell you-only you know your body. I am a little disappointed that your new rheumatologist was not as understanding on what it’s like to have your life revolve around this, where is the compassion?


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[im so blessed]

"I am a little disappointed that your new rheumatologist was not as understanding on what it’s like to have your life revolve around this, where is the compassion?"

Right! Unfortunately, too often compassion doesnt come as easy when you havnt suffered it yourself, albeit i have had drs who have been much more compassionate! Maybe at my next visit once she calms down from being upset at me. I understand her feeling frustrated.

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[gilders]

"Im thankful for the clinical trials that ppl are a part of, otherwise they would always be following protocol"
It's nice to hear people being appreciative of clinical trial patients. I'm on the RITAZAREM trial.

As for whether you should be on drug free remission or not is a tough choice. I have had periods of drug free remission and have quite aggressive Wegener's (when active). I'm currently awaiting kidney transplant and really could not say if I'd never gone drug free whether my kidneys would have failed so badly or not.
I can't regret my drug free choices as the drugs have bad side effects and in my case, they have become less capable of "fighting" flares/relapses. So I'm happy to hold back on maintenance, so that the drugs are more potent during a flare.

[drz]

Interesting post. My Rheumy has told me from the get go that I will be on drugs for life. According to him the risk is too great of Wegeners returning and doing even more damage to already damaged organs. Also that a flare is usually less aggressive when still on maintenance treatment.

Rose

My situation is the same. They doubt I could survive a serous flare and the risk of one goes up a lot once you stop all maintenance meds.

Accepting a life time of more meds might be easier for me since I also have Type one diabetes and have been on insulin for years. Except for a organ transplant there is no cure yet for diabetes.

[gilders]

Although I said that I try to achieve drug free remission between flares, once I have my kidney transplant I will be on anti - rejection meds (which are basically immunosuppressants) for the life of the kidney, so the choice of being drug free will no longer be there.

[Lilly]

"Im thankful for the clinical trials that ppl are a part of, otherwise they would always be following protocol"
It's nice to hear people being appreciative of clinical trial patients. I'm on the RITAZAREM trial.

As for whether you should be on drug free remission or not is a tough choice. I have had periods of drug free remission and have quite aggressive Wegener's (when active). I'm currently awaiting kidney transplant and really could not say if I'd never gone drug free whether my kidneys would have failed so badly or not.
I can't regret my drug free choices as the drugs have bad side effects and in my case, they have become less capable of "fighting" flares/relapses. So I'm happy to hold back on maintenance, so that the drugs are more potent during a flare.

I read all the posts, and I do agree with everyone, even if some differ because this disease is so difficult. It is different with each person, and I "simmer" like Alysia, so I have to stay on 5-10 mgs of prednisone or I will flare. My concern is the attitude of your new Dr. I would definitely give her a chance, and see if your able to get a workable relationship with her. I was very fortunate with my first 2 Rheumatologists. I had a wonderful Dr. who diagnosed me and was my dr. for 10 years, then I moved north and was lucky enough to have the sweetest lady doctor, and both of these doctors were "on my level" when discussing my symptoms and if I was not having symptoms, and took how I felt very seriously, while at the same time I trusted their directions and if they thought I should try another med or stay on a med longer, I would agree. I guess what I am trying to say is, Wegeners is a disease that has a mind of its own, and if a Dr. is trying to treat you with a medication that she thinks you should take....without even taking the time to establish some sort of respect for your feelings and questions you may have, and talk to you about her reasons, etc. I know probably most people would say she is a good Dr. and may not have the best "bedside manners"....and that is probably true. But I hate that on your first visit with her, she was abrupt and stern. Hopefully, the longer you see her, the more she will know about you, and everything will smooth out. I love the way you felt, like you were not sick, and thinking that maybe you were one of the people who could go for years without meds....I often felt a little like that when I was first diagnosed, because I was young, and I was determined to live my life as normally as possibly. And I was able to push through the pain and the flares....I did not have the long term effects of the steroids like I do now. But you have access to better meds, and hopefully you will not have the damage long term that people have when we were diagnosed 20 or more years ago. I wish you the best, and you can still feel like you are not a "sick" person!! I did it for years, I hiked, biked, went to the beach all the time, because I live 30mins away from the beach. And I rode jet skis, the kind you cant sit down on, so I had to balance or fall....that kept my legs looking amazing!! If I was having arthritis in my ankles and knees....I just pushed through it. Don't feel defeated, you are doing the right things. Blessings, Prayers and Love to you....

[im so blessed]

Although I said that I try to achieve drug free remission between flares, once I have my kidney transplant I will be on anti - rejection meds (which are basically immunosuppressants) for the life of the kidney, so the choice of being drug free will no longer be there.
I "liked" your post, but i dont like that you have to go through that :sad:

[Donnak06]

30 years without meds was great but at the time I was diagnosed the doctors did not know much about the disease and they didn't know you could have a flare, they discharged me after 5 years and I thought that was it I was cured. Fortunately, the rheumatologist I am now with does understand the disease which is why I have to stay on maintenance meds. I am on 1.5g mycophenolate which is only a low dose and I don't have any side effects. Could you maybe ask if you could go on a low dose of methotrexate.
I am having a problem with subglottic stenosis at the moment and I am waiting for my first dilation which will be in 3 to 4 weeks but they have said I am still in remission, apparently stenosis has a life of its own.

[im so blessed]

30 years without meds was great but at the time I was diagnosed the doctors did not know much about the disease and they didn't know you could have a flare, they discharged me after 5 years and I thought that was it I was cured. Fortunately, the rheumatologist I am now with does understand the disease which is why I have to stay on maintenance meds. I am on 1.5g mycophenolate which is only a low dose and I don't have any side effects. Could you maybe ask if you could go on a low dose of methotrexate.
I am having a problem with subglottic stenosis at the moment and I am waiting for my first dilation which will be in 3 to 4 weeks but they have said I am still in remission, apparently stenosis has a life of its own. yes thats what im told about my stenosis, that it takes on its own path...she is starting me on 12.5 mg of methotrexate. I had been on it and imuran together for 10 years, just imuran for 6 before that. It makes my hair thin, and i feel super tired, but i cant complain. I think im accepting it a little better now. Thankyou for your responses!

[Donnak06]

You could ask if you could try mycophenolate or cellcept as its known, I did get stomach pain and really tired at first but this only lasted a couple of weeks and now I don't have any side effects.

[Helen]

I'm sorry of this, I can relate to it - truly. I'm wondering, since you had been doing so well in remission for over a year (as well as Donna here: 30 yrs). Did the Fellow Dr. even ASK any questions or document this critical positive info. into your file? This may not only help find a pattern of probable cause to what may be helping you, but compare to other WG patients in the medical database (instead of scolding with an ultimatum for NOT taking drugs you were concerned about?!) You'd think a Dr. in this field would be curious and willing to investigate. Perhaps your environment has changed? Your diet? When it's not documented, no one ever knows. It's a hassle, but doing a journal yourself would help if they're not going to report it and have it placed into your medical file. I've learned overtime, how critical this is regardless of intimidation, to be straightforward to make sure they also document what you said and felt was important, into your report – the GOOD and BAD progress and HOW LONG with/without drugs. Get a copy of the report to see if it aligns to what was discussed. In my experience, I was absolutely shocked (unfortunately much, much later as I had no experience or concerns about reports) to observe so many errors, lost papers, misinformation and/or missing facts! Some symptoms, I never had or even said! which is now causing a lot of grief today. (I recall another example of someone in this forum discovered a Dr. reported he had syphilis!)

Getting your report may also help you feel or get an idea if she is the right Dr. for you. You have every right to request another one you feel comfortable with, as they are the ones ordering “lifetime” maintenance drugs while you had been doing great so far! Low dosage I hope? (Did she even share or advise to take folic acid supplements w/ it?) These Drs. don't take or deal with the side-effects of these potent drugs, and often get incentives from the pharmaceutical co.
Remember, you're paying for it all. -H.