Greetings from Upstate NY

[Deborah T]

Hi Everyone - I can't tell you how nice it was to find this forum. So many questions that no one seems to have answers for. I have been straddled with autoimmune disease for years. Only recently a pretty impressive hole in nasal septum was found and then I was soon diagnosed with Wegener's. I just completed first four weeks of IV Rituximab. I am a full-time RN Supervisor, but have been on disability for the past 6 weeks. I can't believe how tired I am all the time. Not sure if this is normal or not. I am also in my very last semester of school, for my Master's degree in nursing education. I had to put a hold on school during the therapy due to the extreme fatigue and inability to see patients in hospital or nursing home settings for my clinical teaching rotation. I am scared to be in public and scared of working in hospitals. Fortunately, I work in my own office without patient contact. However, my bosses are afraid I will "catch" something from coworkers. This is all so new to me. I have been living tired, sick and in pain for years without thinking twice. Any other full-time employees out there with WG and Rituximab? :confused1:

Blessings to my Weggie Brothers and Sisters -
Deborah T.

[pberggren1]

Hi Deb:

Do you have other symptoms besides fatigue and hole in septum?

Did this fatigue start with the RTX? If so, it could be the RTX that is making you tired.

I would suggest trying to wear a face mask at work to try to prevent catching any bugs. Handwashing is a must as well.

I hope you start feeling better soon. Please feel free to tell us more about the early years and what you were able to do and what symptoms you all had.

[Deborah T]

Hi Phil -

My symptoms have been pretty consistent: Chronic sinusitis ever since I can remember, tinitis for about six years (off-and-on), dizziness, stroke in 2010 without any permanent deficits. Pain in rt face, intermittent severe pain rt ear without ear infection called "trigeminal neuralgia" for lack of better name, pain in the right arm - shoulder to finger tips - sometimes so severe I can't use the hand at all, pain right rib cage, pain left chest (non-cardiac related), pain rt foot, pain rt knee, several bouts of pneumonia, pulmonary infiltrates bilateral lungs, lots and lot of urinary track infections, renal tubular acidosis, lots of kidney stones, fevers off and on, and constant, non-relenting fatigue for about two years. Something new withint past few weeks - my hand and fingers turn purple when cool....not liking that one. I am on a scazillion medications (that's why I try so hard to work full-time, for the medical benefits). I have tried po and SQ Methotrexate without success, no change in blood work inflammatory markers. No medication helps the pain in the face/ear - I have just learned to live with it. I am very, very lucky that my job is administrative, so when pain is really hot, I close my office door at work and turn the lights down and don't answer the phone. This has allowed me to work full-time.

I carry a face mask with me, gloves and hand sanitizer for shopping.

Deborah T.

[mishb]

Hi Deborah and welcome.

You work in an environment where you can easily get away with wearing a mask, however you also work in an environment that is too easy to get a virus or infection of some sort :sad:

I also work full time but I don't wear a mask.......most times I use a neck scarf and just pull it up when required.
My job is in Insurance and therefore is also administrative.

I hope the fatigue eases for you soon and you can get back to work.
My husband said to me (only yesterday), I don't know how you continue to work.......my answer, while I still can, I still will. :biggrin1:

[Dirty Don]

Welcome Deborah T...this is a good place to be for questions, ideas, sharing, venting...hehe, you name it, we do it on here! Even wonderfully accurate booger details...sheesh! Anyway, sounds like you have WG with all the good symptoms. It is possible that your rtx is making you tired...may also be that the rtx hasn't taken full hold yet...how long have you been done with the infusions? Usually one takes at least a couple of weeks to notice good change and maybe as many as 5-6 weeks. The symptoms you describe are usually taken care of by the pred dosage (you should still be fairly high in dosage at this time) and the WG drug, whichever is making better numbers. Sounds as if you are still flaring some with the roving pains, etc. Talk with the docs, make sure numbers are moving, do you have WG experienced docs? Best to you, keep at it, fortitude and patience go a long ways with this dx.

[Deborah T]

Hi Dirty Don - Thank you! Just had last IV-Rituxan four days ago. Have been on Prednisone x 10 years, now tapered down to 20mg/d. Have labs set up for tomorrow. Great rheumatologist, I trust her. Patience is not an
easy thing to acquire, but I am trying. :rolleyes1: Blessings - Deb

PS - how do I post my picture on this site?

[Deborah T]

Hi mishb -

I am so very happy to hear of someone else in office environment working full-time with WG. You have no idea how wonderful this is. I will do the scarf thing - excellent suggestion.

Blessings - Deborah :thumbsup:

[pberggren1]

Ya, even booger pics Don........:w00t:

Well Deb, I'm sorry you have this nasty disease. Sounds like it has hit you quite hard over the years.

In regards to your nasal septum perforation, Dr. Bob Levobics in NYC would be the guy to see if you can. Maybe you take the train in to see him. He is the best ENT in probably the western hemisphere when it comes to Wegs problems like what you have and saddle nose and throat problems. His office number is: 212-262-4444.

[Michael Bell]

Hi Deb, I have been working full time in a college with 750 residential students since getting out of hospital.I am in daily contact with them and I have had a few minor infections in the last year and a half but only lost a few days here and there, so i guess I've been lucky. Welcome to the site, I know you will find it very helpful and it's a good place to have a rant if you feel the need. Good luck and God bless.
Mike

[windchime]

Welcome to the forum Deborah. It's a great place for information and wonderful, supportive people to talk to. Sorry that you had to find us, but if you have to have the disease this is the place to be.

I've had Wegs since I was 19. I did not have any treatment until I was 61 (this year.) I really had no problems until the early 2000's. Around 2006 I started becoming fatigued, but didn't have any idea it was probably the wegs causing it. It finally got so bad (I was falling asleep at work and driving home) that last year I went to my PCP about it and here I am in treatment on CTX and Pred. I still have the fatigue, but not quite as bad. From what I gather some fatigue might be with us forever. Just learn to pace yourself and learn your limitations. As you improve you can change your pace. Please give your body time to adjust to the drug protocols and the disease. Hope this helps.

[annekat]

Welcome, Deborah,

Everyone has pretty much said it all. I'm glad you have a rheumy whom you like and trust and are getting the proper care. I hope you will continue to join in on the conversations here.

It's interesting that you mentioned the "trigeminal neuralgia". I had that way back in the late 1980's, around my left eye and temple. It was treated with amitriptyline, which worked, but made me drowsy and wonky, and it finally went away. Every time I make a list of all the little things I've had over the years that could be Wegs precursors, such as weird feelings in my ears, I find out later that I've forgotten one!

[Alysia]

Hi Deb.
welcome to the best forum on the globe :)
rtx made me tired for long time, especially at the weeks after it.
I used to work in hospital (psychiatric, as psychologist) at my first years with wg, but it was an environment too contaminated. I was too sick while working there, with nasty germs, so I left under medical circumstances, to work only in my office.
take care and continue to write.

[gilders]

Welcome Deborah.
I don't want to put a damper on things, especially as this disease affects everyone in it's own unique way. But apart from the fact that my kidneys will eventually totally fail, fatigue is my worst problem with WG.
It does get much worse during relapses/flares, but even when I'm in remission I'm always fatigued. The first approx. 13 years after onset of WG the fatigue was manageable and I was able to work, but evetually I had to give up work. Admittedly I have other health problem such as heart and renal failure which can exacerbate my fatigue. In fact, perhaps, WG isn't the cause of my fatigue during periods of remission, it could be mostly down to my heart and kidneys. I guess that has just made my reply rather pointless and unhelpful.:confused1:
Maybe I should have kept it short and sweet and just said welcome!:wink1:

Finally. One of the reasons I hate fatigue is because it makes you feel SO bad, but nobody can see how you feel. I also find that even though fatigue is debilitating, when you try to claim health benefits the person reading your claim form is likely to think "yeah right you think you're tired, try working 50 hours a week and then moan about fatigue"

[annekat]

I would have to agree that fatigue can become a constant companion with Wegs, whether from the meds or just the overall effects of the disease, possibly a lack of oxygen due to damaged blood vessels, possibly shortness of breath due to a number of different issues in the lungs, trachea, or sinuses. And we just can't take as much stress as we once possibly could, which can cause fatigue in itself. And our adrenals may not be functioning the way they used to, even if we are in remission or close to it. I can do physical things like chop wood or climb a hill without much difficulty, or engage in social events that involve a lot of people skills, but my body will tell me about it later in the form of fatigue. I think this is pretty common among Weggies, though there may be some who are capable of a lot more.

[Debbie C]

Hi Deborah, I just wanted to wecome you to the forum and say "sorry" you had to find it. Sounds like wg has taken control of you, but I'm sure the rtx will kick in in a few weeks and you will start to feel better. As far as the fatigue,I have good days and more tired days. On the good ones I push myself to the limit and the others I just take a nap. You need to hang a "Do Not Distrub" sign on your door and shut things down and relax for awhile !!!!

[Deborah T]

Greetings Debra - I am trying to wrap my mind around the name of the thing that has been causing so many medical issues in my life. Much easier to battle than the nameless foe always lurking in the background. If I can keep awake long enough to hang those signs that will be great. :thumbsup: I am getting a lot of wonderful suggestions from fellow Weggies. I was 50 years old when one doctor just said getting tired is part of the aging process.
Blessings - Deborah PS: Love the pic

[Lilly]

Hi Deborah, Welcome to the Forum. Its really more like a family! You will find answers, comfort, and you can even break down and vent if you want to, we are all here for you! I have had wegeners for 23 years. I have always been in the Medical field, and my Mother was so scared forpm, and me, working aroung the patients at the hospital, then at Dr offices. Im not a nurse, I do front desk, charts, billing, insurance, CT, etc. I am on disability now. I just became too tired, and in too much pain, and had to be on strong meds, and had to have little surgeries on my sinuses, eyes, over, and over. Its just maintainance on this disease. But your lethargy is completely normal. I can go to bed at 7pm and wake up at 11am. And still be tired. Ive tried to make a schedule for myself, to get up early enough to push myself through the day, and live as noral a life as possible. I am so sorry that you have gone so far in your nursing, and now working in hospitals is risky. But I have also told myself, when I go to the grocery store, how many germs of people I don't know what they have, where they have been, etc. and my hands are all over the store! So you don't want to be crazy scared all the time. I just wash my hands a lot. Unless it is airborne, or you get a cold, flu, sinus infection....just get on some antiobiotice asap! I work part time now, 20 hrs a week, 4 days a week. It gives me a schedule so I don't lay around in pain and sleeping all day. I feel like I am accomplishing something, and its not easy! But I also need the money, and the socializing with co-workers helps too. I was taking Rituximab infusions every 6 months, I was "not normal" after each one (as my Mother put it! Lol) But my last visit to my Rheumy said all my tests came back looking like I am in a Remission! Yay! But I still take 5mg prednisone daily, and Bactrim for my lungs. What kind of pain are you in? Joint pain? My sinus cavity was ravished over the years by wegeners, and so I have unbearable pain in my face, I take strong meds for this. I really hate that I talk so much. But I just cant help it! I have tried! HAHAHA~ My Daddy said if he put tape on my mouth, my head would explode! But about your dilemma, Im afraid most Weggies on this site would agree that being so tired is part of this disease, even when in remission. Don't beat yourself up about it, or let anyone think you are lazy......Your NOT!!! Well, gotta get ready to go to work, and I am tired, and don't want to get up and eat something and get ready, but I gotta! I pray for you, and send blessings. Ive had this for awhile, as many others on here, so ask any questions,,,,,,Im open. Have a great Day! :-)

[Lilly]

Gosh Alysia, I so admire your ability to say so much with so little words! I just Talk and talk~bla bla bla!!!!! I bet people are looking at my posts, and think, "Oh, here is Lillys Book!" :-O

[Alysia]

Gosh Alysia, I so admire your ability to say so much with so little words! I just Talk and talk~bla bla bla!!!!! I bet people are looking at my posts, and think, "Oh, here is Lillys Book!" :-O
it is because English is not my language :wink1: you should have read me in Hebrew.... :lol:

[drz]

I would have to agree that fatigue can become a constant companion with Wegs, whether from the meds or just the overall effects of the disease, possibly a lack of oxygen due to damaged blood vessels, possibly shortness of breath due to a number of different issues in the lungs, trachea, or sinuses. And we just can't take as much stress as we once possibly could, which can cause fatigue in itself. And our adrenals may not be functioning the way they used to, even if we are in remission or close to it. I can do physical things like chop wood or climb a hill without much difficulty, or engage in social events that involve a lot of people skills, but my body will tell me about it later in the form of fatigue. I think this is pretty common among Weggies, though there may be some who are capable of a lot more.

My nephrologist told me yesterday that increasing my blood pressure might help reduce my fatigue so i going to try it by cutting dosage of one of blood pressure meds and see what happens. My target will increase from 110/70 to 125/75 while keeping my pulse rate under 80 instead of 75. Like others stated, I figure my fatigue was naturally due to my many medical issues and meds I need to take to survive. It sure is limiting though and a main part of my adjusting to my "new normal".

[annekat]

Interestingly, drz, my blood pressure and pulse rate are usually a little above your new target; of course, I don't take any bp meds. this sounds like an interesting plan, and I hope it helps you to have a little more energy.