Update and stories

[carriej22]

Hi Folks,

Just thought I would post a little update and I have some questions (per usual).

So, it's been just a little over two months since I was initially diagnosed with Wegeners. I was diagnosed on May 30, and started treatment June 1 (RTX).

According to my doctor, I am in "remission" as of now - here's the thing. I still feel like crap :( ... I am down to 30mg of prednisone (still loopy dee doopy) and my face is.. Well it's a fish bowl. I have also put on weight, but I haven't had an appetite for the past week so that's going right now, but the puffy face is still here... Oh it's so bad.. lol. Everyone touches it. It's hard as a rock and it's uncomfortable.. If I put my hands over my head for any reason my own face suffocates me. Sad.

I am physically WEAK.. I was feeding the dogs this morning, I am 22 years old.. We keep our dog food in this big sealed container and I had to reach down the bottom - it knocked the wind out of me! Seriously? I don't have patience for this. I got so angry taking wet clothes out of the washer the other day (was having difficulty getting them out) that I just sat on the floor and cried (and then had a hard time getting off the floor.. LOL).

I am back working both jobs, I am so tired. My husband is thinking of traveling for work so I don't have to work as much... I don't know how I feel about this, but it seems like it's the only option since I do not quality for any sort of financial assistance/disability/etc.

I feel like I'm getting a sore throat and I am freaking out about it. No fever.. However I am terrified of everything. It's really messing with my mind. I live in fear of becoming sick and dying. Some days I am a fearless beast (few and far between), other days (most days) I cower and avoid everything. Grocery shopping is a nightmare. I have begun living off canned, frozen, bagged, vacuum packed food. Anything that is not being cooked needs to be in a bag. Then there was a listeria recall on bagged salads and I almost lost my mind. Had myself convinced I was contaminated. So now bagged lettuce is not safe. Actually any lettuce is not safe to me at this point. Or any other consumable uncooked thing... it's making me crazy!

I am ending up with these big nasty sore purple-black bruises that last forever from my methotrexate injections. I don't know if I'm doing it wrong or if something fishy is happening. Have an appointment to see my Rheumatologist next week.

Now - sort of unrelated.

I received 4 RTX infusions (month of june) weekly methotrexate, daily prednisone, what is this bactrim you all speak about? I am not on anything else other than vitamins (folic acid, vitamin D, etc)... Am I supposed to be?

[mishb]

Hi Carrie,
I see some very positive things in this post
Firstly, you are in medicated remission…..way to go girl. That is an excellent effort in two months
Secondly, you are down to 30mg of pred…..another great effort.

Now if only we can get you head in to the right thinking space…….your stressing will only exasperate the problem. I know it’s hard not to get worried, but you need to try.
In regards to the salads, I think you should be right in eating these as long as you wash everything thoroughly, the same with fruit (someone please correct me if I am wrong). Stay away from any sprouts though because these do carry listeria/salmonella and are potentially life threatening to anyone with auto immune conditions.
You shouldn’t have any problems with fish or meat etc.

In regards to grocery shopping…..we have online supermarkets in Australia that deliver your groceries to you…….is this an option where you live? Or maybe hubby can drop down the shops to pick things up.

Bactrim is an antibiotic. I was told by my Rheumy and also ENT that if you are on MTX you cannot take Bactrim (You can google the reason). It seems really strange that some people on here are taking bactrim whilst on MTX. I think the bactrim usage is to prevent infections in the lungs if your symptoms are lung related.

Take care of yourself and try not to stress about it and hopefully, you will be in full remission in no time.

[annekat]

No one has told me I am in medicated remission, although I think I feel a lot better than you do, and I've been treated for WG for over a year. But if that's what your doc is telling you, that's great. Maybe I am, too, but my doc is just more conservative about saying it.

In any case, I'm sorry you feel distressed both physically and mentally. You probably should not work quite as much if it is making you that tired. On the other hand, no sense in staying home and feeling scared of everything. Maybe you feel better when around people, though that of course carries with it some risks of catching something. I don't worry about the lettuce and other produce, and perhaps I should, though nothing has happened. I'm also around the public a lot and handle money. I haven't caught a thing, that I know of. But it is a little scarier now with what happened to Al..... I wonder if his going to bird camp had anything to do with the infection he caught.

I don't remember my moonface feeling hard... that sounds kind of weird, though I did have some hardness around my swollen eyes in the earlier stages. But once you get down to 20 mg. and lower, it is likely the moonface will start to go away, as mine did. It does sound like you are doing exceptionally well if you can go back to work after 2 months. Hang in there!

I didn't know about not taking Bactrim with MTX, and apparently my doc doesn't either. I'll look into it.

[carriej22]

Thanks Guys. I'm feeling better today. I am just so frustrated :( ...

I read about Al. So sad and scary.

You guys have been such a help - I hope one day that when I get my head wrapped around it I will be able to offer the same assistance to others going through it. This disease stinks.

The worst part is trying to explain to people what's going on. I don't look sick and frail, so people assume you feel fine. Even my husband sometimes forgets. He seen me hit rock bottom with this so now he thinks I'm ready to run a marathon. He doesn't quite understand exactly how much little things can tire me out. In our 8 years of being together, I think I seen him sick once or twice. It's hard to explain to someone who's never really been sick what being sick is like.

As far as groceries and things like that go - I do get Eric to pick them up sometimes. I live in a very small city so there is no online delivery options or anything like that. However sometimes I like to go because Eric is not the most adept grocery hunter. Lol. Give him lists and pictures and you still never really know what he is going to come home with!

[annekat]

Here's a thread I found on here about MTX and Bactrim: http://www.wegeners-granulomatosis.com/forum/medication/1263-anybody-taking-bactrim-methotrexate.html . There are others, too, and I googled a bit. It seems it's not as much of a problem with the low doses we take, although it should be done with caution. Also, the thread touches on using Bactrim to stave off flares, as well as certain pneumonias and infections.

[Sangye]

Carrie, I know you don't see a Wegs specialist so I'm really questioning how he can say you're in remission after only 2 months of treatment and while you're still on high dose pred. The drugs just don't work that fast, and high doses of pred will make the inflammatory markers appear lower than they might really be. Remission usually takes at least 3 months, and it's not even a solid remission by that point. It just means the Wegs is not highly active anymore.

As far as feeling very weak, that can be due to the Wegs still being active, side effects from the drugs, etc.... You've been on massive pred for months and that is very depleting to the body. Since you're having extreme weakness I don't think you should be working at all. You need to give your body a chance to recover. I've seen so many people drag out recovery or constantly flare because they can't or won't stop working long enough to recover.

High dose of pred greatly exacerbate anxiety. You'll see what I mean when you get to lower doses. Meanwhile, you might have to take medication to deal with anxiety so that it doesn't cripple you and impact your health. Anxiety burns up a LOT of energy and you don't have any to spare. I suggest seeing a therapist to help you deal with the anxiety, depression and frustration of having a serious chronic illness. You can take reasonable precautions with food to eat healthy food safely. Eating packaged, canned, processed food will prevent you from getting stronger. That kind of food is weakening to everyone.

Bactrim is given to people taking ctx (cyclophosphamide/ cytoxan), because that drug makes you susceptible to a particular form of pneumonia (PCP) that is very easy to prevent but very difficult to treat. Bactrim isn't generally given with rtx. Even though rtx is as potent an immune-suppressant, it doesn't seem to have that same connection with PCP.

[Dirty Don]

Carrie, remission, by definition, is only a recognition of the subject at hand, in this case WG, going into a 'calm after the storm' kind of state. It is NOT, by any means, a reversal of the current circumstances, nor does it mean the WG is going away, only starting to be controlled. You are on your way...THE way is a long journey...I have a mild case of WG, was caught early on I guess - only attacked my sinuses and lungs...and it has taken at least 6 months to get good numbers, and closer to 9 months to go into a 'remission'...and I'm still on low dose pred (damnable C-Anca won't get below 'normal') & mtx.

As for being tired, I tend to agree with Sangye on reading your commentaries on the disease. You are anxious over the disease and probably many other things in your life. A psych can help, diet can help, etc. I also use meditation, Lexapro, and concerted efforts not to take things too seriously...is what it is approach! The gist of it all, for me, was while I was in ICU, didn't know where I was, hallucinating all over the place, and wanted to die, literally. Nurse recognized my incoherence and inability to deal with things at the time, so he called my wife, kids, etc. Got lots of 'what the ---- do you think you're doing Dad' calls late that night...wife came back to hospital early in the AM, she coaxed and soothed me, finally I broke down...I finally grieved for the loss of my mother 5 years earlier...after that, it's all been downhill...er, uphill, hell, I don't know...all I know is once I confronted my deepest frustration, I began to mend...yes, the docs helped, the meds helped, the rest helped, I've been damn lucky...but recognizing thru my wife's efforts that I needed to shed that deep anxiety helped the most...after that I was determined to fight this sucker! I won't win in the longer run of things, but I'm holding on with a better attitude and have learned to laugh again...seriously...LOL!

My best to you...hang in there, hope you can get to the state of acceptance over who you are now and what you have to do...as I & Sangye & others have suggested, it's a different journey now, but still it's YOUR journey...fare thee well m'dear!

[elephant]

Carrie, I believe you are the first to know if something is not right with your body. The words you used feeling like crap, no appetite and very tired, are signs that things are not moving smoothly. I would initiate a call to your rheumatologist soon and tell him/her how you are feeling. If I ever mention that to my WG specialist she would be checking me out and making sure something else is not going on besides a WG flare. You might need some lab work and a urine check to see if there is any kidney or infection involvement. Stay strong Carrie, we are all here for you.

[mishb]

This forum is amazing.
I love how every person can read of someones fears/needs/thoughts and then each person can find a different answer/response to try and help in anyway he/she/we can.

Every answer here is amazing and great information for members old and new and also to know that you are not alone in the way you are feeling or coping with the condition that we have found ourselves with.

As elephant says, Carrie, Stay strong........we are all here for you :biggrin1:

[annekat]

Just think if we didn't have the internet and this forum was not possible. How would we as individuals with Wegs get along? And even if none of us had Wegs, this is an exceptional group of people! It is pretty cool that, if Wegs has to exist, and we have to have it, at least it has brought us together.

[Sangye]

I went for 2.5 years without this support group and without talking to a single other Weggie. It was miserable and lonely. I knew so little compared to now. Not only is there incredible camaraderie and kind support here, I've learned so much more about other drugs, other involvement and how to deal with side effects and damage than I would have if I'd continued to live with Wegs all by myself.

[carriej22]

Thanks Everyone, it means a lot to me to know that you guys are out there to listen to me whine.. LOL

My bloodwork/urine samples I get every week have been coming back good - whatever that means. I don't understand the technical bits but she tells me that it's good. She literally said the words "remission" too. This is my family doctor speaking however, not my specialist. I see my specialist this Thursday. I haven't seen him in 6 weeks so I'm wondering what he will have to say.

My days are so up and down. Today I feel good - I'm wondering if it could be the methotrexate making me feel like garbage. It seems like I always feel like garbage for a few days after I take it.

[annekat]

I'm getting the feeling that "remission" is a term that is used somewhat subjectively by different people. It WILL be interesting to see what your "specialist" says, and I only use the quotes because I remember some discussion about him and don't know if the people on here who know more than I do would consider him a specialist by their criteria. (Not to put him down; I don't know him! Or maybe you even have someone else now and I missed it.) And your family doctor cannot really be blamed for using the word if she sees great improvement and is happy with your progress. It's all good news by whatever label! I just hope you do start feeling better soon, as otherwise could indicate that things are not as great as she thinks.

It could be the methotrexate and the prednisone making you feel crappy and anxious. I'm on a pretty low dose of MTX, only 10mg./week, but I've definitely noticed the fatigue for a couple of days after taking it. That seems to be improving, as I took it last night and really feel pretty good today. So I guess it is a matter of getting used to it.

[carriej22]

My specialist is a rheumatologist. Such a long word to write and I don't know how to spell it! LOL.. So I just call him my specialist. I know that he is in cohoots with a WG specialist - I just don't know which one. I just know that when I had my initial treatment - he had called another doctor and had faxed him my 'treatment plan' which the other doctor signed. I signed the same piece of paper, but I wasn't paying attention to doctor's names. I remember asking who that doctor was and the nurse told me that it was the wegener's specialist that he consults with. At the time I wasn't so concerned.

I am on 25mg. methotrexate a week. I have only been taking it for like 9 weeks also so maybe it takes some getting used to.

Mind you - there has been great improvement. I remember wondering if I was going to be able to walk for my wedding, as I couldn't even roll over in bed. I'm not ready to run a marathon, but I have made some mad pee dashes to the bathroom.. lol. The sores are gone, the stiffness is gone, the loopyness and dizziness is almost gone. Sitting here at the computer typing I feel pretty much normal. Eyes are still funky - but we're getting them dilated next Monday to see what's going on in there. It's only when I need to do anything (I really notice it taking wet clothes out of the washer - holy cow) physical I notice a difference. And the fact that I could sleep forever... At first wasn't sleeping, now I could sleep all the time.

I'm really all over the place to be honest. Tomorrow I could wake up and be miserable as all get out and sore and cranky. I think the mtx is messing with my female hormones too which might be playing into all this...

[Dirty Don]

Today I feel good - I'm wondering if it could be the methotrexate making me feel like garbage. It seems like I always feel like garbage for a few days after I take it.

That is very possible. When I began my mtx, oral dose, I felt like absolute crap for about 2 days afterwards, every time! So, rheumy had me split the dose into 2 separate times, 12 hours apart...it seemed to work. I even miss the nightly dose once in a while and take it the next morning...still feel fine that way. Doc even said it doesn't really matter as long as I get it in me within 24 hours, but it is nice to not be nauseous and super tired each time now. Up and down is typical of recovery...some days I felt fine, others weren't so good and worse at times...sheesh. Still remission isn't just the numbers...my C-Anca is still a tad high...but, docs feel I am in remission cuz despite not being as strong nor as durable as I was a year ago, I do everything else pretty well without any symptoms. You'll get there, be patient and consistent...I don't know your family doc, but I hope she's using WG standards and testing for WG numbers, and I hope the specialist really knows WG and isn't just reading out of a book...it does take some experience with the disease...your learning curve is, perhaps, higher and faster than your doc's...don't forget YOU know how you feel and your symptoms now...listen...then ask...

[pberggren1]

I got sick and was dx in 2003 and did not find this Forum until 2009. Gwen started this Forum in 2008 and Andy took it over. Though I belonged to a Wegs discussion mailing group back in 2004 and 2005. It was not nearly as good as this though.

[annekat]

Well, you are doing better than I am in the "specialist" department because my doc is neither a rheumy nor a Wegs specialist in any sense. A lot of rheumies don't know anything about Wegs, anyway, which is why I haven't gone to one in my town; I get the feeling they mainly see arthritis patients. I even heard about a local Weggie who went to a rheumy because that's what she thought she was supposed to do, and he just point blank told her he couldn't help her. So she is seeing a pulmonologist, as I am, though a different one. But your guy sounds pretty good if he's treated Wegs before and is consulting with a higher-up specialist. I've thought over and over of finding a rheumy in Seattle with some Wegs experience who would also consult with the true experts. At least I have a name of someone given by a forum member. But since I'm doing well, I haven't followed through, which I know is not a good reason. I may see more and more need for it as I try to taper pred and get off the meds, as it will be a tricky time, trying to avoid flares.

We are all glad to hear about your great improvement. You impressed us all by going through with the wedding in the condition you were in, and you even looked quite beautiful in your wedding picture, as I remember!

[annekat]

I got sick and was dx in 2003 and did not find this Forum until 2009. Gwen started this Forum in 2008 and Andy took it over. Though I belonged to a Wegs discussion mailing group back in 2004 and 2005. It was not nearly as good as this though. Wow, Phil, you must be one of the longest-standing members here! That's a long to time to deal with Wegs without the forum (and you, too, Sangye!). I feel very fortunate to have had the benefit of the forum since my diagnosis.

[drz]

Hats off to Phil and Sangye and their peers who have been here for many years. It is nice you can share your wisdom from years of experience. I know there are several others here from same time frame who do not post as much but still are helpful contributors. Thanks to Gwen and Andy for starting and maintaining this forum.

[Sangye]

I joined in November of 2008, when there weren't very many active members. It was really different then! We used to get on the forum first thing in the morning to check in with each other and joke around. There was a lot of silliness. We always said it was like sitting around a kitchen table with family. There aren't too many of us still posting from those days-- most are doing better and are out living their lives and/or too busy to post. Jack is gone, of course. I sure do miss him. Next month will be a year since he died. I feel like it was yesterday. I feel like all of it was yesterday. Isn't time bizarre?

[annekat]

I joined in November of 2008, when there weren't very many active members. It was really different then! We used to get on the forum first thing in the morning to check in with each other and joke around. There was a lot of silliness. We always said it was like sitting around a kitchen table with family. There aren't too many of us still posting from those days-- most are doing better and are out living their lives and/or too busy to post. Jack is gone, of course. I sure do miss him. Next month will be a year since he died. I feel like it was yesterday. I feel like all of it was yesterday. Isn't time bizarre? It sounds like it was really a lot of fun in those days, with that kitchen table feeling. It is still fun, but in a different way, I'm sure. Yes, time is bizarre.

[drz]

It sounds like it was really a lot of fun in those days, with that kitchen table feeling. It is still fun, but in a different way, I'm sure. Yes, time is bizarre.

It seems like Jack's death was only a few weeks ago and Al's a few days ago. I wonder if time distortion is another of those unknown side effects of Wegs. :unsure: I know I lost a lot of time during treatment. Some things long ago seem real recent and some things a few years ago seem ancient history.