Symptoms

[manalolana]

Aloha everyone,
I am new to the forum as well as the world of WG. I've been ill since Dec 08 and after many different diagnosis and not improving, I was sent to the Mayo Clinic in April of this year with all biopsies and slides and discovered that I had WG all along. So far, WG has effected skin and sinus and no major organs.

I have been on Prednisone since March 2009 starting at 60 mg per day and now around 14-25mg per day. If I go below 14mg/day, I get bad flare ups.

After coming back from the Mayo clinic, they put me on Methotrexate. Started with pills but stomach pain was too hard to handle that I am getting the injection. Apparently I have reached my maximum dosage at 80 units per week; Believe that is .8 ml.

My symptoms are as follows which I don't know if these are from medicine or WG and was hoping to get some guidance or verification that I am not crazy.

- Swelling in general
- Water retention
- headaches
- Body aches

The following are very disturbing...
- Low grade fever to fever daily
- Eye pain which is most bothersome where it's not often that I can keep my eyes open for a longer than 2 hours
- Swollen eyes
- I am so tired all the time!

Any guidance on if its WG and/or Med or just me (?) would be greatly appreciated.

[pberggren1]

I'm not certain but it does sound like it could be a Wegs flare. Which Mayo were you at and when? Who is your doc there? The lowering of Pred too fast can really wipe you out and leave one tired. The swollen eyes with pain, fever, headaches, bodyaches, swelling, and water retention sure sound like it could be Wegs to me. I would be in contact with your doc at Mayo right away. Wegs can go sideways over night and leave you in a real bind.

[manalolana]

Thank you so much for your reply pberggren1! I was at the Rochester MN location. My RA here did her residency there. Was seen by Dr K Warrington at the Mayo.

I caught a cold in July this year and that set me back quite a bit where I have been on antibiotics 2 weeks at a time and was just cleared last week to restart my Methotrexate injections this past Friday which made me more tired than usual. If you think these are flare ups, I guess I have to wait 4-6 weeks to see if the injections work. :(

Is there anything you recommend for the eye pain?

Thank you again for listening (reading) my post and responding. Feel so alone here.

[chrisTIn@]

Aloha Manalolana!
Are you from Hawaii? It's beautifull there, we visited the islands last year when our daughter was studying in Honolulu.

I hope you can visit your doctor soon, because you don't seem to feel well at all.
I haven't experienced eye-pain till now, but can you get some relief from a cold-pack or something like that?
Wish you all the luck, hope you can get the proper treatment for all this.

[marta]

Aloha Manalolana, welcome and know that you are definitely not alone in the world of uncertainty associated with WG. To me, that's the hardest part. I a writing this from the hospital where I came yesterday wondering if I'm flaring or just sportin' some virus (knowing inside that I'm flaring despite my rheumy telling me it's possibly meningitis and tryng to scare me with a spinal tap). My biggest complaint was an excruciating, constant, all over my head headache - which was part of my initial symptoms before diagnosis, but this time my right eye was quite painful from behind, almost swollen shut when I got out of bed yesterday and it wouldn't stop weeping. I also couldn't keep it open for long or change the direction I was looking at without it having a hard time catching up to my intention.

As for the fatigue, I've been experiencing that since mid October, when my state of "general well being" started to slowly deteriorate which was losely corelated to me going from 15mg to 12.5mg of pred. Just one of several corellations, not necessarily a causation.

Hope this helps. If nothing else, it shows that you're definetely not alone. Take care, stay strong, and go stick your toes in that amazing Hawaiian sand for me...one of my top ten fave holiday memories. All the best from the snowy Canadian Rocky Mountains.

[Jack]

I used to get eye pain when my sinuses were involved and this was a sure sign for me that I was having a flare. Have you been on Cytoxan at all? It is the usual first treatment together with steroids and was very effective in my case. Watch out too for renal involvement. My kidneys failed very quickly (over 2 weeks!) and with few symptoms apart from fatigue.

[manalolana]

Mahalo chrisTIN@! Yes. I live on Oahu. I do have RA on Oahu who also trained at Mayo. My RA stated that if the injections don't work, she has one more she wants to try and if that doesn't work, I will be back at Rochester MN.

[elephant]

Welcome Manalolana, I had eye pain for years and when it got really bad that is when WG was very active. Body aches, fever and feeling tired is what brought me to the hospital. Not to scare you but Jack is right, you need to get to the Rhuemy today. You could be developing lung nodules, I did and it came up fast...within a couple of months. My alarm bells are going off, please call Mayo! The methotrexate is not keeping your WG controlled. We are here for you.

[manalolana]

Aloha Jack,
Did consider Cytoxan as an option. I am a 35 year young single lady with hopes of having my own children soon :) and the side effect of infertility of the medicine was very discouraging for me that I opted out.

I got natural remedies such as cold green tea patches to sauna that helps alleviate much of the eye pain so I can work it's just that it only last for an hour of so. My work is very understanding and allowing me to work from home and come in to the office only when needed to be presenting in person.

I was hoping that eye pain may subside with decreased pred but from some comments here it seems like it's also a part of flare up.

[manalolana]

MAHALO! Elephant!
I have been bringing up my eye pain concerns to my RA and she stated that it was probably pred. But now we know sinus area has been impacted as well, I thought just staying on the infections and pred at a lower dosage would help.

How would you find out if the lungs have been impacted?

That was such a kind comment when you said "we are here for you". Really, until I found this forum, I didn't know who to talk to and ask.

[manalolana]

Mahalo Marta! Yes, I love the beaches here! I used to live in Rome and came to Oahu as my first state in US and fell in love with the island that I never left. I just started my injection this past Friday so I am hoping to drive myself to a beach in a few weeks once my body gets adjusted to the toxic level.

[manalolana]

Here is one of my favorite quotes...
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." -- Mother Teresa

[Jack]

If it appears that the medication is not controlling the Wegs. you really must do something about it before more permanent and serious damage is caused. I understand your concerns re fertility, but if you are not here to enjoy children there will not be much point. As mentioned in a couple of posts, this disease can turn so very quickly and escalate into more dangerous areas. That is how I ended up having to have a renal transplant.

[Sangye]

Hi Manalolana, welcome to the group. I don't have anything to add to the great advice the others have already given you.

Marta, you need to get a brain MRI asap. You could be forming a Wegs granuloma behind your eye--not that uncommon. Please get your doc to order one.

[JanW]

Welcome, Manalolana!

I understand completely your fertility concerns, and I am sure that the specialists at Mayo do as well. Unfortunately, mtx is rarely a 'first line' defense in severe cases; it is used mainly for mild to moderate (I myself have a moderate case of WG -- severe subglottic stenosis, mild sinus involvement, saddle nose, joint pain) and have only ever used mtx on it's own -- not with pred -- but I'm pretty rare vs. the typical patient on the forum. Most people start on ctx or rituximab and pred at first. I'm not sure if rtx has a better profile re: fertility preservation.

I guess what you would have to weigh is the fertility implications of 'stronger' chemo vs. the fact that you may be moving further and further away from goal of remission with mtx, and since you can't get pregnant taking that drug anyway (and for some time after, if I'm not mistaken).

[elephant]

Mahalo, you can have wegeners in your eyes, so it is important to see a eye doctor who specializes in autoimmune disease and knows Wegeners disease and what to look for. When I was having a flare in my sinuses my left eye was very painful....i went around with pink eye on and off and it wasn't pink eye, it was the Wegeners. I didn't have any symptoms with the lungs, when I was having the symptoms that you stated the docs did a chest x-ray and found a shadow and then the had to do a CT the next day. The doctors kept me over night because they thought I was septic high fever and severe chest pain ( heart)? Even had a echo done on the heart, which I had many times before diagnosis.
I am on Bactrim DS, cellcept 2000 mg, cyclosporine 100mg and prednisone 6 mg to just keep the wegeners in remission. But I have a mini flare in my sinus and the doc had to double my bactrim and will see if that will work.
So just want you to know if you feel like something is not right, then be persistant. I learned my lesson, I was in denial for a long time.

[Brooke]

Welcome! I too have been to Hawaii, very beautiful! My husband is from Samoa so we spent a couple of days in Hawaii before going to Samoa a few years ago.
Sorry to hear you have Wegener's but as you will see this is a great forum to belong to.

[drz]

Aloha Jack,
Did consider Cytoxan as an option. I am a 35 year young single lady with hopes of having my own children soon :) and the side effect of infertility of the medicine was very discouraging for me that I opted out.

I got natural remedies such as cold green tea patches to sauna that helps alleviate much of the eye pain so I can work it's just that it only last for an hour of so. My work is very understanding and allowing me to work from home and come in to the office only when needed to be presenting in person.

I was hoping that eye pain may subside with decreased pred but from some comments here it seems like it's also a part of flare up.

Rituxan is also another stronger treatment that Mayo recommends for Wegener's disease. Did they discuss that option?

[Sangye]

Rituxan does not affect fertility like ctx does, because it's not chemo.

[manalolana]

Since I just started the injections this past Friday, I am hoping that in the next 4-6 weeks, it will start to work and hopefully taper down pred as well. Thank you so much for your advise!

PS - Your profile pic is very cool!

[manalolana]

Talofa! One of my best buddies are from Pago Pago!

[elephant]

Hi manaoloana, just take it slow tapering off prednisone, cause if you get off it too fast it can cause a WG flare if the WG is not really controlled since prednisone can mask symptoms. Are you on Bactrim and prednisone....sorry I forgot.

[Brooke]

Manaoloana - Talofa to you! how cool, that is where my husband is from. Last name is Mageo. I will name some of his family members and maybe you would know them or your friend would!!
Dad is Meauta Mom is Esa, brothers: Alei, Nefu, Faleni
Family members from Amaua are with the last name Taui

[Sangye]

Gosh, what beautiful names. :smile1:

[Brooke]

I think so to Sangye! it was hard for me to pronounce a lot of them at first!

[eileenv]

Welcome Manalolana, sorry to hear that you are having suffering all these wegs symptoms and hope that you are able to them sorted out pretty quick. I envy you living in oahu, i spent two glorious weeks there many tears ago, a truly beautiful island.

[marta]

Manalolana, hope it all sorts itself out for you soon. You're definitely among friends here. It's such a unique, cool, global group hug that it gives me goosebumps every day. Have you considered getting some eggs out and keeping them safe for a later date? I was given that option but being 43 with a 3 year old at time of diagnosis, I figured my hands are plenty full.

Sangye, a brain MRI???? That sounds big. If they found a granuloma behind my eye would they treat it any different than just dealing with a flare? I didn't know they can go in and give individual granulomas special attention. Other than knowing would there be any benefit?

[manalolana]

I will ask my friend. His family name is Foresgren.

[manalolana]

Thank you! I can't wait until I feel better so I can enjoy the "every day" things that I used to take it for granted!

[Sangye]

Marta, you definitely need to know if you have Wegs affecting your eye. They might need to intensify your treatment. If you leave a granuloma behind the eye untreated (or treat it insufficiently) it can damage the eye, other nerves in the area and brain tissue. The eye can even be pushed out of the socket. Please ask for a brain MRI just to make sure. They really should be doing this with anyone having the symptoms you do.

[marta]

Thanks Sangye. Will do. I'm gonna talk to rheumy within a couple of days. They've actually cut out the cyclo as of today because my liver enzymes keep climbing. So now I'm only on pred, which as we all know will not hold Wegs at bay on it's own. So I have a few things to chat with him about. Gracias amiga.

[manalolana]

Have a few questions our of curiosity... I couldn't handle mtx by pills so I do injections weekly. I understand the dosage varies pending body weight. I do 80 units or i think that equals to .08ml (?) weekly.
- For those of you who are taking or have taken MTX, what was your dosage?
- I get so exhaused for the first few days of the injection. Is it just me or anyone also experience the same?

Mahalo for your help!

[Sangye]

I've never heard that mtx dosing is based on weight. (Cytoxan is.) Anyone else have info about it?

[pberggren1]

Sangye, I did not know that if the liver enzymes are climbing that you have to be taken off of ctx?

[DEE]

i used to take 22mg of mxt on a saturday and was very tired
it was about wednesday before i use to feeel ok as far as i remember i was weighrd before i started to take it but he never said the two things were related
i use to get mouth ulcers ith mxt too
Phil liver enzymes raised was one iof the reasons i was tak off cxt but have not dropped to far yet now im taking Imuran

[Hammy8241]

20mg weekly. No side effects , but also had no reaction when on oral mtx - just did not work.

[manalolana]

Apparently for my weight, i am at max dosage of mtx. so I really am hoping it works. I know many of you have been ill for a long time... I just am so tired of being ill and never knowing how I would feel one moment to another.

[elephant]

Manaloloana, my sister always complained of being tired the day after her injection of methotrexate. So I think it is a normal side effect, just keep track of your symptoms and write them down on a daily journal. Let your doctor know too.

[manalolana]

Mahalo Elephant! I talked to my doc yesterday. She stated that I would be tired since I started again. Also told me to go see an eye doctor for my eye pain.

[elephant]

Make sure your eye doctor is familiar with Autoimmune disease's ( what to look for) or maybe he can give you a referral.

[manalolana]

Thanks elephant!

[manalolana]

OMG! That sounds like me Dee. It's so discouraging to be this weak!

I am thankful for friends I have here but my family lives in a different country. Literally oceans apart. :( Not so fun being sick without family.

For mouth ulcers, I increased folic acid to 5g a day and it seems like it helped.

For better liver function, I take milk thristle at least 1000 mg a day. My ID doctor is originally from mainland China and he thinks that has been helping me with my liver functions.

[manalolana]

Thanks eileenv! I just joined so I am still so overwhelmed that there are others out there and how nice everyone is. Aloha!

[Sangye]

Be careful with milk thistle. It's able to heal liver tissue, which is great. But it also detoxifies the liver. Drugs are treated as toxins by the body, so detoxing means you could be losing the very drugs you need. Don't take anywhere near the suggested dose.

[manalolana]

ah ok. I will make it a point to ask my doc on that as well. Thanks Sangye!

[LisaMarie]

Here is one of my favorite quotes...
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." -- Mother Teresa

amen to that quote

[manalolana]

I love that Lisa Marie! MAHALO! My middle name is Rosa Maria :)

[LisaMarie]

Manalolana,
Welcome to our roller coaster......I have been dx since May and hate this ride....mine is in my sinus and right jaw as well as trach stenosis and right ear with noted hearing loss.....still trying to find the right combination for me ...just spent 14 days in the hospital with some funky fungal infection that almost took me home to the big house in the sky and at 43 yrs old am quite glad he left me here for a bit......My husband is fillopino and has some difficulty realizing how sick i was till i almost died...something about me being stubborn and acting well when i was sick as all get out ...I tend to over do it ...not use to sitting still ...so please when your body says rest ...trust me REST....cause it will come and knock you out in a not very nice way......keep close touch with your WG specialist ....and keep asking questions til you get your answers....I write all my questions out then me and the doc talk and i write his responces down...and wneh he can not give me and answer he is honest enough to say I do not know but will try to find out....i see him every 4-6 weeks....hope you get to feeling better soon...i mediate ...it works for me

[LisaMarie]

have a good night i gotta head to bed

[manalolana]

Wow! Thank you so much Lisa Marie! Roller Coaster Ride is right!

I am sometime in denial that I am sick. And I guess, it's dreaming about how energetic I used to be.

At work, in the exception of those at work that needed to know for liability purposes since I have been needing to work from home more often than not (my boss has been trying to keep my "pride", a very nice man), I am still trying to pretend that I am not sick in front of others. I really need my job since we don't have good medical here in the states. I don't ever had to pay medical until I moved to America. And I never realized how exhausting it was to put a good face on until I got sick. Until this year, I pretended I will be okay in front of my mother not to worry her. Until she came to visit me when I had lost about 10lbs and was weighing about 90 lbs, she didn't know how sick I was.

Things happen for a reason I believe. Had a fiance last year who stated that he couldn't support me emotionally and broke off the engagement which I am thankful for. And the few friends I have, they have been nothing but supportive, taking me to hospitals, waiting when I went in to surgeries, bringing me food or taking me out for a drive. Never had to ask for help and this experience continues to humble me.

I am going to do what you stated above. And see the seed grow :)

[Jack]

I am sometime in denial that I am sick.
I think you speak for most of the people on this forum. :biggrin1:

[LisaMarie]

I work in a small hospital and was lucky enough to transfer to a desk job in late DECEMBER 2009.....so i have an awesome boss....much better than the one i had working as a nurse on the floor....but please be careful....my hospital is like a family and when i got admitted to the hospital few people knew til i crashed and burned and ended up in the ICU....THEN everyone knew...which is good cause now everyone helps keep me inline....so i do not over do it....so except the help and we all go thru denial.....n being mad...angry...n...sad....then we vent here and life is better again have a great day

[eileenv]

Aloha Manalolna, It's hard when you are a long way from home when ill, i'm glad you have good friends that are there for you. Dip yout toes in Waikkaki sand and gorgeous sea for me, oh those were the days.

[manalolana]

Aloha everyone,
Finally went to see an eye doctor for the eye pain yesterday. Apparently Prednisone disabled my eyes' ability to generate moisture. Gave me prescriptions and advised that I should start generating my own moisture in my eyes in about 4 - 5 months. In the mean time, doc told me to use eye drops and for the first time in months, my eye pain decreased! I had no idea I had dry eyes! lol They still hurt but compared to what it was, I am so thankful!

[Geoff]

Good News Manalolana! I only recently discovered the effects that Pred can have on our eyes, but as we know, all of our drugs come with side effects.

[eileenv]

Good to hear Manlolana, I knew pred effected the eyes, but didn't know they made them dry, glad your eyes are not so painful now.

[manalolana]

lol! No kidding. Some opportunity cost I was thinking... many side effect in exchange for possibility of decades of quality life hopefully sooner than later :)

[manalolana]

I didn't know either Eileenv. Since I have been on Pred for about 2 years, the eye doc wants me to monitor pain level and come back in a few months to ensure that I don't develop glaucoma.

[eileenv]

Thats good Manalolana that he is keeping a close eye on you(now Geoff be quiet!) :tongue1:

[manalolana]

What would Geoff say?

[elephant]

Manalolana, five years ago I was diagnosed with dry eyes ( saw so many eye doctors) and had eye pain. The eye doctor gave me restasis and I took it for 6 months and it helped. The weird thing is that I was not on prednisone. I don't know if the WG had something to do with that?? It is weird. Another thing restasis is a immunsuppressant ( cyclosporine)...I take cyclosporine orally because I had a kidney transplant 21 years ago. So I am wonder if the restasis kept the WG quiet in the eye??? Who knows?

[manalolana]

I got a call from my rheumatologiest office today that they cannot rule out WG that they will advise after they get a full report from the eye doc. I also got restasis.

[manalolana]

Doing everything that docs asked me to do. But got more flare ups over night. I think I may have to increase pred again. :confused1:

[elephant]

Manalolana, hopefully you can get staighten out soon. How much prednisone are you taking? Call your doctor about raising the prednisone too. Sorry you flared up!

[manalolana]

I don't remember. But I will ask. Thanks drz!

[manalolana]

Now I think about it, perhaps I was too eager to decrease my prednisone. I just started 12mg a day this Wed. Was at 20-25 a month ago I think.

[manalolana]

Just venting.... Caught a cold in last year December which lead to yet another sinus infection. Been on 5 rounds of antibiotics leading to horrible stomach pain and hives. Paused antibiotics but still had sinus infection. Was treated with nasal steroid instead and now with tear duck infection. Now my face hurts including ear. Since I have had infections, can only be on prednisone and have had flare ups; Low grade fever, exhaustion. I really am tired of being sick.

[manalolana]

Does anyone have infections where you are not on any other treatments but prednisone? Wondering if anyone has recommendations how to counter fatigue and fever? I still need to function at work but it's a bit difficult. Look forward to any guidance you may have!

[pberggren1]

You might be flaring manalolana.

[Sangye]

I'm concerned that what started as an infection has awakened the Wegs. Repeated sinus "infections" sounds suspicious to me. Fatigue and fever is also a sign that it could be Wegs in disguise. Have you called your Wegs doc?

[pberggren1]

Ditto to what Sangye just said manalolana. I can speak from experience with this the last 2 years.

[manalolana]

Yes, sorry. I do have a flare up.

[Sangye]

Are they treating it with anything other than pred?

[manalolana]

No. Not until I am done with infections. :( It's not fun trying to on a face at work when I am so exhausted from being sick. If you have any recommendations, it would be greatly appreciated.

[Sangye]

Unless they've proven that they are indeed infections (ie, via culture) you have to assume it's Wegs activity and treat it as such. Also, there are times when both are occurring-- infection and Wegs-- and they still have to treat the Wegs.

[drz]

No. Not until I am done with infections. :( It's not fun trying to on a face at work when I am so exhausted from being sick. If you have any recommendations, it would be greatly appreciated.
I have posted some details elsewhere about my last sinus infection which caused a Weg flare. Along with sinus infection I had bronchitis and ear infection with ruptures of both ear drums. When the infections were treated and cleared up, the Wegs subsided. I received two different antibiotic pills, antibiotic ear drops and eye drops, and nasal steroid spray. It helped me to have the sinuses vacuumed out by my ENT, using the Sinus rinse squirt bottle several times a day and a warm mist humidifier frequently which helped both sinuses and bronchitis. The steroid nasal spray and a boost in my azathioprine were only extra treatment for Wegs. I feel much better once the infections got cleared. My rheumatologist says that because of damage to sinuses and nasal area from Wegs frequent sinus infection are something I need to expect and watch out for.

[elephant]

I have sinus infections every six weeks. I have no fever, tiredness or joint pain. It is a real big pain to constantly take antibiotics. The pollen is crazy in Greenville,SC, so I am squirting Veramyst up my nostrils and taking Bactrim every other day. I rinse twice a day with neil med. The ENT had a look at my left maxillary a couple of weeks ago and said it was swollen. It wasn't sure if it was the Wegs disease or Damage. I had four surgeries in my left Maxillary!!! I am sure those two combines caused severe scarring, it will never be normal. I see Dr Carol Lanford in June.

[Gator]

I used to get eye pain when my sinuses were involved and this was a sure sign for me that I was having a flare. Have you been on Cytoxan at all? It is the usual first treatment together with steroids and was very effective in my case. Watch out too for renal involvement. My kidneys failed very quickly (over 2 weeks!) and with few symptoms apart from fatigue.
I have a mild case of WG. What happens if you get a flair up, in terms of what meds do they put you on if you went from Cytoxins (200mg) to Imuran for 6 months and got a flair up? Do you go back on cytoxins or can you get by with prednisone on your 1st relapse/flair up?

I stopped cytoxin in Jan. The last couple days I had pain in one of my eyes for maybe 5 mins at a time for a couple times. Not as bad as before the meds, but I hope it's nothing bc I don't get my blood/urine tested in a month. So now I'm thinking maybe I should push up that date. But also in the last couple months I started having to rinse my nose out 2 and sometimes 3 times a day when in Jan it was once (or sometimes twice for fun). Though we just had a lot of pollen in that time.

I know these are questions for my Dr but also good general Qs for the weekend. :thumbup: And I don't see my Dr for a while.

[Sangye]

Gator, there is no automatic protocol for treating flares. It's highly individual. Some flares might be treated well with just a slight increase in pred, others might need to add or increase a milder immunosuppressant (imuran, mtx or Cellcept), and others need the strong drugs (ctx or rtx). One thing is for sure-- the sooner you catch a flare, the easier it is to treat it. You can really save yourself having to go on the heavy-duty meds by catching it early on.

[Jack]

I'm not sure of all the reasoning behind it because it was a long time ago and I was less informed, but for some of my relapses I returned to ctx and others only required a big jump in Pred. usually to 50mg. I was being very closely monitored at that time and was often down to weekly visits.

[JanW]

Gator -- I think as even with WG at first diagnosis, treatments are highly variable from individual to individual and from doctor to doctor. The important questions to ask when you do have a flare is the doc's rationale for treating you with certain drugs. And, as Sangye said, if you feel anything at all, call your doc. You wouldn't believe how much my docs stress that (and I've been in remission more than six months).

[manalolana]

Thank you so so much everyone!

Sangye and Pberggren1, I did talk to my rheumy. She said she will be able to put me back on Cellcept once I am clear of infection. For now, we just increased my prednisone. Don't think it's working that well. Still running a fever and so tired. I think my tear duct infection is clear so hopefully, as much as I hate being on medicine, I can start Cellcept and start to feel better.

Miss not being sick. I don't know what I would do without all of you on this forum. I thank all of you from the bottom of my heart!

[pberggren1]

I think maybe the Cellcept will not be enough to get you into remission. It sounds like a flare to me and it should be treated ASAP. I think something stronger like Aza or Rtx is in oreder but hopefully your doc is knowledgable about Wegs.

[Sangye]

I don't think imuran is stronger than Cellcept. I think they're about the same, along with mtx. Some flares can be treated with the milder drugs-- it depends on how severe and what areas are involved.

[Jack]

I think that Imuran is certainly different in its action to Cellcept if nothing else since it was a step I took several times during reduction of my immune suppression. The regimen was ctx then imuran then cellcept.

Any apparent infection should be treated as a Wegener's symptom unless confirmed by a culture. Even then, when I had infections and took antibiotics, no change was made to my other medications.

[Sangye]

Yes, Cellcept definitely works differently than imuran. I just think neither is stronger than the other. I wonder if they didn't keep you on imuran because of your kidney transplant. Maybe imuran is harder on the kidneys, I have no idea....

I agree about having the infections confirmed. Lingering infections that don't respond to antibiotics sounds like Wegs to me.

[manalolana]

Seeing my rheumy today. Will ask her about Imuran. My body and mind are so tired, I am hoping this will work some magic so I can be functional again, somewhat. Thanks everyone!

[manalolana]

Aloha everyone,
Started on Cellcept on Friday. Will be testing to see if I can take Imuran on Monday.

My blood tests results are not consistent. Some weeks my C3 & C4 are off, some weeks they are okay and my Lymohcytes are off. But I feel fatigue and run low grade fever all the time. Does anyone else experience this? Or am I going insane here?

[Sangye]

You are going insane. Nah, just kidding.... It sounds like Wegs but could be a lingering infection.

Btw, what a beautiful avatar pic!

[pberggren1]

Manalolana, I would not worry too much about the C3 and C4. My doc barely ever orders those and when He did he said not to be concerned about them going high or low.

[manalolana]

Awe! thanks Sangye! Means a great deal have put on so much water weight thanks to prednisone.

It is a great possibility that I am going insane :)

[manalolana]

Hi Phil, I have a tendency to quantify things. A bit of a type A :) So what does your doctor(s) order to monitor your progress?

[pberggren1]

Right now CBC, electrolytes, CRP, ESR, ANCA, Creatinine, Urinalysis, Renal function panal, liver function, etc.

In the future if I am ever off of the immunosuppressants and on a low dose of pred I would think it would be the same but not as frequent, probably once a month or every six weeks.

[gwenllian111]

Aloha everyone,

- Swelling in general
- Water retention
- headaches
- Body aches

The following are very disturbing...
- Low grade fever to fever daily
- Eye pain which is most bothersome where it's not often that I can keep my eyes open for a longer than 2 hours
- Swollen eyes
- I am so tired all the time!

Any guidance on if its WG and/or Med or just me (?) would be greatly appreciated.


Aloha!

I noted what you said about water retention as something I can relate to - does anyone else suffer with this too?

I hope that you're feeling a bit better by now, gwen xx

[Sangye]

I have some water retention but I have even worse fat retention. :rolleyes1:

I do take a diuretic, though. Now I just need a fat-uretic.

[manalolana]

You crack me up Sangye!



I have some water retention but I have even worse fat retention. :rolleyes1:

I do take a diuretic, though. Now I just need a fat-uretic.

[manalolana]

Cellcept side effects were worse than MTX. From Thursday, stomachache, bloating, gas, diarrhea... Saw my doc today. Did a test for Imuran today. Will find out next week if Imuran is an option for me.

So some say if life throws you lemon, make lemonade... Well, think I will add some stevia, squeeze of ginger, crushed mint and a shot of two of bellvedere and shake it with ice and serve it to myself this evening.

[manalolana]

Aloha Gwen,
I started taking prescription for water retention and added Dandelion tea and pills which help a lot!


Aloha!

I noted what you said about water retention as something I can relate to - does anyone else suffer with this too?

I hope that you're feeling a bit better by now, gwen xx

[Sangye]

Aww, so sorry you had a bad reaction to cellcept. Sure would be nice if they figured out how to stop that particular side effect from happening, since otherwise it's so well-tolerated.

It's wonderful if you can use dandelion tea to manage the water retention--much safer than prescription diuretics. Mine is too severe for that and even prescription diuretics only remove some of it.

[pberggren1]

Manalolana, what test are you refering to about the Imuran?

[mishb]

So some say if life throws you lemon, make lemonade... Well, think I will add some stevia, squeeze of ginger, crushed mint and a shot of two of bellvedere and shake it with ice and serve it to myself this evening.

I can't have lemons anymore, they cause my hands and/or ankles to swell and have days of pain, about two hours after having even a taste. Does this happen to anyone else? it is like the lemon (or any citrus for that matter) has just bought on a RA flare. Rheumy says it shouldn't do this but we have tested it and it is definately citrus that is one of the factors.

Michelle

[gwenllian111]

Interesting! When I have fluid retention, I can 99% guarantee that i'm having, or about to have, a flare up!

I will try dandelion tea - thank you very much for the tip, Gwen xx

[gwenllian111]

I have some water retention but I have even worse fat retention. :rolleyes1:

I do take a diuretic, though. Now I just need a fat-uretic.


LOL Sangye!!! Me too!! xx

[manalolana]

Manalolana, what test are you refering to about the Imuran?

Yes. And my regular blood test.

[manalolana]

[/QUOTE]
It's wonderful if you can use dandelion tea to manage the water retention--much safer than prescription diuretics. Mine is too severe for that and even prescription diuretics only remove some of it.[/QUOTE]

I use both. Also go to sauna almost every day to stretch and sweat it out. I used to go to sauna for regular stretching and detoxing but now, I try to go every day. It really helps me.

[Red]

Hi everyone i was wondering if sauna will work for weight gain pred me 45 lbs

[Sangye]

I would not recommend going to a sauna. In Eastern medicine, inflammatory diseases are considered to be due to an excess of the Fire element. Saunas or hot water might feel good but they will deepen the imbalance and can cause the disease to worsen or flare.

When I'm able to get to the public pool I love to finish by going in the hot tub. It keeps me from getting chilled on the way to the locker room. However, I can't stay in it longer than 5 mins (timed) or the joint pain goes wild within an hour. This is true even when the Wegs has been in remission. So I go in the pool, then 5 mins in the hot tub, and then back in the pool for a very quick dunk to cool off the excess fire.

[Psyborg]

I would not recommend going to a sauna. In Eastern medicine, inflammatory diseases are considered to be due to an excess of the Fire element. Saunas or hot water might feel good but they will deepen the imbalance and can cause the disease to worsen or flare.

When I'm able to get to the public pool I love to finish by going in the hot tub. It keeps me from getting chilled on the way to the locker room. However, I can't stay in it longer than 5 mins (timed) or the joint pain goes wild within an hour. This is true even when the Wegs has been in remission. So I go in the pool, then 5 mins in the hot tub, and then back in the pool for a very quick dunk to cool off the excess fire.

I definitely agree here. In fact I had a couple of very scary heat related incidents pre-diagnosis, and one was a hot tub. I imagine the sauna might produce similar affects. My issue was my blood pressure would drop so low I'd pass out. Thankfully I had 4 people with me in the hot tub :)

[Gator]

I have a mild case of WG. What happens if you get a flair up, in terms of what meds do they put you on if you went from Cytoxins (200mg) to Imuran for 6 months and got a flair up? Do you go back on cytoxins or can you get by with prednisone on your 1st relapse/flair up?

I stopped cytoxin in Jan. The last couple days I had pain in one of my eyes for maybe 5 mins at a time for a couple times. Not as bad as before the meds, but I hope it's nothing bc I don't get my blood/urine tested in a month. So now I'm thinking maybe I should push up that date. But also in the last couple months I started having to rinse my nose out 2 and sometimes 3 times a day when in Jan it was once (or sometimes twice for fun). Though we just had a lot of pollen in that time.

I know these are questions for my Dr but also good general Qs for the weekend. :thumbup: And I don't see my Dr for a while.
Well, things got worse. On (last) Friday the all too familiar joint pain started in both ankles and a lesser extent the knees, mostly in the 1st hour awake in the morning (though I have been taking advil the last couple days and it has not hurt my joints since Monday; also bc I became sedentary). To add to the joint pain, I'm now having what I believe is a sinus infection (feels like a head cold too at times), which really got bad after I went to the ER on Monday (I went to the ER bc I was telling my Dr about the joint pain and sinus changes (blood, ect in mucous) and he said to go since I was out of town).

I see my Dr tomorrow, at 3:30pm. To this point I have been reacting very well to each new stage in the treatment, but I am concerned I will be put on a strong medicine that may not be necessary. I would greatly appreciate if anyone could help me come up with some questions. Earlier JanW said something that may be helpful, "The important questions to ask when you do have a flare is the doc's rationale for treating you with certain drugs."

Also, I understand that sinus infections are bad bc they are infections and our immune system is suppressed, but does anyone have any experience with having a sinus infection while on imuran (r just a sinus infection in general)? Is it like getting a cold where it will pass after a short time? Do they use prednisone and antiobiotics? Any info is good bc too this point I have been downplaying my disease to myself and now it again has my undivided attention. Please help.

PS, my blood and urine work came back all ok, but they opnly tested for things they could there i.e., white blood cells, ect; however they could not test things like C ANCA and P ANCA.

[pberggren1]

I'm sorry to hear you are having a setback Gator.

It sure sounds like Wegs to me acting up. I have had a lot of sinus and nose crap over the last 8 years. So I know what you are going through in that respect. It is no fun at all.

I know what you mean about downplaying the disease. In the begining when I was first diagnosed back in 2003 I was kind of overwhelmed and let the docs do all the thinking. But by my first flare in 2004 I realized this disease needs more of my attention and I started to do more research.

I'm not sure what questions you should ask your doc. But it sounds as if the Imuran that you are on is not working. If I remember correctly you are not on any pred right now, right? If your CRP and ESR are in normal range and white cell count is as well then it is hard to say if it is Wegs or not. Usually with Wegs the WCC and ESR and CRP all go up, but not in all cases.

Do you irrigate your nasal passages with a squeeze bottle or something like that or do you feel you don't have to do that? But with that joint pain it sounds like Wegs.

I always know what my blood numbers are like WBC, CRP, ESR, Creatinine, ANCA, etc. I don't always get copies of everything but my doc is a 5 minute drive from my house and I live in a small city so I see my doc fairly regularly. I would suggest that you do get copies so you can track the numbers over time to how you feel. And it would also be beneficial to have a daily journal tracking your symptoms, meds, and blood work, etc. This will make it easier down the road to recognise when the Wegs is acting up. But Wegs can be so deceptive that even the Wegs Specialists can have a hard time knowing if it is Wegs or not.

I hope this helps some.

[Gator]

Thanks for the quick reply, pberg. I'm not on prednisone now. Just Bactrim and Imuran.

I do rinse my nose out 2 (sometimes 3) times a day with Neil Med's isotonic saline, but in the last couple weeks I have increased that to 3-5 times a day. Today I did it twice instead though, bc I didn't want to worsen the infection somehow... I will ask my Dr tomorrow if it is a bad idea to force water through these congested sinuses that are already infected>

I do keep all the blood work #s. I like what you're saying, I think I can do that easily enough.

PS, tonight my eyes have become very sensitive: they water a lot and weirdly itch at times (you feel like rubbing it). Is that eye symptoms a sinus infection issue usually?

[JanW]

Gator - if you are having sinus issues, I would not assume infection, but rather WG acting up. That having been said, the only recourse is not necessarily to go for a stronger drug -- your doc may want to increase your current dosage, or add pred to see if your problems are caused by inflammation (in which case the pred will help and he can wean you off once the higher dose of imuran kicks in).

My ENT says that whatever ENT weirdness a WG patient has, they should always simply assume it is wegs unless proven otherwise (e.g. through cultures). There is really no downside in taking this course -- the quicker you jump on even the hint of a flare, the less sick you will be. You are a little less than a year in at this point, so you want to be very careful.

[drz]

My last flare resulted from a sinus infection and bronchitis. I had both ear drums rupture from ear infections, and eye infections too. I did manage to avoid pneumonia though. They increased my Imuran and added a nasal steroid and antibiotics to treat the infections. Once the infections cleared up the Wegs subsided again back down to a drug induced remission level. It took about a month and like Phil said, those sinus infections and ear infections and eye infections are no fun.

[Gator]

The good news is over the day today, my sinuses got a little better. And by the time I saw the Dr I was doing alright all things considered. He said if it was an infection my blood results from Mon would show it and that it would be getting worse in stead of getting better. We're not sure what it is but decided to keep a close eye on it and treat it with prednisone. He prescribed 2 days 40mg pred, next 2 days 30mg pred, next 2 days 20mg pred, and then 10mg pred a day for the next week or so until I see him again.

The thing is, I am feeling better and better (earlier my throat started hurting though, not so much now), so I may delay or forgo taking the prednisone. I don't know. But all in all good news.

I hope it's not a WG flare, though then I/we would have no idea what it was if I take the prednisone. Anyway, THANK YOU for the posts guys!!! It means a lot.

[manalolana]

Aloha everyone,
I am supposed to start Potassium Iodide today. Has anyone used it before?

[Sangye]

What are you taking it for?

[manalolana]

same... WG :)

[Sangye]

Potassium iodide to treat Wegs?? :confused1:

[delorisdoe]

I found this on health canada...


"KI does have other therapeutic uses. For example, KI may be used to break up mucus in long-term lung problems such as asthma and emphysema, and to treat thyroid conditions."

[pberggren1]

I found this on health canada...


"KI does have other therapeutic uses. For example, KI may be used to break up mucus in long-term lung problems such as asthma and emphysema, and to treat thyroid conditions."

Interesting! I will have to ask my doc about this on Monday.

[Hal]

Hi Manalolana,

I have not read this entire thread, but if not mentioned already, you might have Scleritis. This is the redness and pain associated with Wegs. I had it bad in both eyes (especially the redness) before I was diagnosed. You need to see and eye specialist/surgeon, who will check your eye pressures. I was taking three different types of eyes drops at first, now I am down to two different types. My eye pressures are currently 17 or 18, which the docotor says are OK. He is one of the doctors I see regularly monitoring my various symptoms. He says that as long as I am on Prednisone I will need the drops.

I hope this helps. Good luck.

Hal.

[manalolana]

Thank you everyone for your input! I was at Mayo Clinic last year where I was diagnosed of WG after a year and a half of multiple diagnosis. At Mayo, they recommended that I try MTX and Potassium Iodide. I tried MTX from April - Dec 2010, horrible side effects with no promising results. Had some bad sinus infections from Dec till still on going but at worst stage in Q1 of 2011 that we paused MTX and tried Imuran. Imuran has not been working well for me either. So now I guess we are doing another spray and pray method of treatment. I hope this works! Can't wait till I go in to remission!

[elephant]

Have you tried Cellcept? Hope you go in remission very soon!

[manalolana]

Thanks Elephant! Yes tried Cellcept but could not handle the side effects. Hope you are having a great weekend!

[elephant]

I sometimes I wonder if the rhuematolgoist have thought of putting a patient on three or four low dose immunosuppressants to control Wegeners. My rationale is that the patient might have fewer side effects to the multiple lower dose multiple immunosuppresants. Be mindful that I am not a MD or Pharmacist. Just wondering...

[manalolana]

Thanks Elephant! A bit frustrated today. The potassium iodide didn't really work and made me so tired that I basically slept from Wed to Saturday afternoon until i stopped taking it. I have had some red marks on the lower part of my legs for a few weeks but they can't tell if it is weg or Erythema nodosum unless they do a biopsy. And I don't want a biopsy as there are only a handful of pathologists here in Hawaii and they misdiagnosed me for a year and a half with the same type of biopsies. It was only when I took all my slides and samples to the Mayo clinic last year in April when the Mayo pathologist stated that i had ANCA present from the very first biopsy which dates back to 1st quarter of 2009. Just venting.

[Sangye]

Hang in there manalolana! :hug2:

[pberggren1]

Ya, ditto to what Sangye said. This is so frustrating.

My doc said today that there is a condition with the kidneys with Wegs in which Potassium Chloride is used because the kidneys do not reabsorb it again after filtering. I hope I explained that right.......lol.

He has never heard of Potassium Iodide being used for Wegs, only for radiation, like what happened in Japan earlier this year with the earthquake and damage to the nuclear power facility.

[manalolana]

Too bad we don't live close by to have a get together once in a while!

[pberggren1]

Yes, that would be nice for sure. I wish I had more money and health and could travel to see many of you fellow Weggies. I know Marta was just in HI.

[manalolana]

Nice! I didn't know that. BBQ on the beach would be nice wouldn't it? Anyway, I am back on Imuran. Hope this works if not, I am back to Mayo.

[drz]

Thanks Elephant! A bit frustrated today. The potassium iodide didn't really work and made me so tired that I basically slept from Wed to Saturday afternoon until i stopped taking it. I have had some red marks on the lower part of my legs for a few weeks but they can't tell if it is weg or Erythema nodosum unless they do a biopsy. And I don't want a biopsy as there are only a handful of pathologists here in Hawaii and they misdiagnosed me for a year and a half with the same type of biopsies. It was only when I took all my slides and samples to the Mayo clinic last year in April when the Mayo pathologist stated that i had ANCA present from the very first biopsy which dates back to 1st quarter of 2009. Just venting.

Can you ask to have a biopsy also sent to Mayo for a second opnion?
That is pretty common request around here and often the results from Mayo are different than the local pathologist.

[manalolana]

Off to Mayo on December 6th. My rheumy wants me to try RTX but wants Mayo confirmation. It's going to be so cold!!! Anyone planning on being at Mayo MN in Dec?

[manalolana]

My insurance is denying coverage for RTX which will cost approximatly 20K. Will appeal but wondering if anyone else had to go through the trouble.

Do you see many on RTX going in to remission?

[elephant]

I know several on the forum were denie and then their insurance did end up covering the RTX. Appeal it and find out why they are appealing it. RTX was approved for WG.

[Sangye]

Yes, you need to find out exactly why they're denying it. Especially since rtx is FDA-approved for Wegs, there should be no problem.

[HypnoticEyez]

I know this is a bit late, but wanted to share with you that what took me to the ER before being diagnosed with WG was severe joint pain, coughing up blood and the growths (granulomas) and pain on my eye lids (see below). I had CT and X-rays where they found granulomas in my lungs. Because of my eyes the doctors wanted to do a MRI on my head, but due to a panic attack I didn't have it. It was actually an Ophthalmology that suggested I had WG. A biopsy was done on eyes, but was inconclusive. I had a VATS (Video Assited Thoracic Surgery) which confirm that I indeed had WG. This is what my eyes looked like the day I was admitted to the hospital.


http://ladyhaque.com/WE.jpg

[Sangye]

Oh my gosh... I have never seen anything like that.

[manalolana]

Oh my! I am so sorry that you had to go through that!!! Hope you are much better now!



I know this is a bit late, but wanted to share with you that what took me to the ER before being diagnosed with WG was severe joint pain, coughing up blood and the growths (granulomas) and pain on my eye lids (see below). I had CT and X-rays where they found granulomas in my lungs. Because of my eyes the doctors wanted to do a MRI on my head, but due to a panic attack I didn't have it. It was actually an Ophthalmology that suggested I had WG. A biopsy was done on eyes, but was inconclusive. I had a VATS (Video Assited Thoracic Surgery) which confirm that I indeed had WG. This is what my eyes looked like the day I was admitted to the hospital.


http://ladyhaque.com/WE.jpg

[Chris G]

Oh HypnoticEyez, that looks painful!!! I had several bouts of eyelid swelling as well, but your swelling is worse than mine was.

Mine was only one eye at a time, and it was the nasal side (inner corners) that were swollen and red, along with scleritis of the eyeball. I was downright scary looking. I remember entering the opthalmologists office and being asked "what are you here for today?"..........are you kidding me?!?!?

In the end, it was an opthalmologist (corneal specialist) who ran my first ANCA test, which finally pointed us in the right direction.

[HypnoticEyez]

Manalolana, thankfully my eyes are back to normal. The only reminder is this picture of course and the scars from the stitches which are in the crease of my eyelids and can't be seen.

Chris I was asked the same thing when I went to the ophthalmologist. :huh:

[Shannon]

Oh my goodness I had no idea that WG could do this. My right eye is affected but with scleritis and occasional swelling. I am so glad that they were able to correct this for you. You must have been
so scared.

[elephant]

That is what brought me to five eye doctors, mostly swollen eye lids and dry eyes that were painful. But my eye lids were not that swollen. Glad your feeling better.

[HypnoticEyez]

My eyes weren't just swollen, the granulomas were hard as rocks and VERY painful.

[beeinformed]

Hi HypnoticEyez!

I also had severe swelling of my eyelids (along with alot of pain) due to an acute inflammatory attack on my tear glands. By the way, what treatment did your doctors prescribe after this attack?

[HypnoticEyez]

Beeinformed, I was put on 60 mg of Prednisone, Mesna and IV Cytoxan (1600 mg) the day after I was diagnosed. The joint pain was gone the day after treatment, and it took 10 days for my eyes to look normal again. I am now down to 30 mg of Prednisone and IV Cytoxan every 3 weeks.

[drz]

Oh my goodness I had no idea that WG could do this. My right eye is affected but with scleritis and occasional swelling. I am so glad that they were able to correct this for you. You must have been
so scared.

My ophthalmologist told me that scleritis is most common cause of loss of vision from GPA. I thought it might be attacks on optic nerve or retina. I had scleritis a couple weeks before the doctors finally figure out I had WEGS but got it treated quickly and correctly due to vigilance about my eyes from damage by diabetes and other issues and history.

[manalolana]

At Mayo this week!

[Dirty Don]

YEA! Don't know which one you're at, but you're in good hands...they will work you over and more! It'll all be for YOUR good! Good luck! I love it there, insofar as love matters in a hospital!! LOL

[Al]

Hi, Malalokana!

I joined the forum after your earlier posts, so I went through the thread form the top. You have been through a lot! I hope the Mayo guys get it sorted out. We would love a report!

Al

[manalolana]

me too! Thanks Al! I am at MN location. A long trip from Hawaii :)

I took personal holiday during the week of Thanksgiving and slept so much. I didn't know that it was even possible to sleep that much! Amazing what sleeping can do. I was hardly sick! Last week, we internationally decreased my pred to get me sick for the trip but still not really sick which worries me since that is not my normal. I still have lesions on my legs so hopefully that helps.

[Al]

I am at MN location. A long trip from Hawaii ....

A real holiday, I guess, to leave Hawaii and go to Minnesota in the winter! Make it worthwhile! Just out of curiosity, where are you in Hawaii? After spending a couple of years on Lanai, my sister live in Mililani for 30 years or so. My niece and nephew, now in the Portland area, still say "da kine", and call me a haole.

Al

[manalolana]

Went to my boyfriend's parents house in N Cal. Was great to relax and get away from reality! I live in Chinatown on Oahu. At my first doc appointment room now waiting for my rheumatologiest!

[LisaMarie]

Sorry I will miss you I am going December 21st thru the 22-23 will arrive on the 20th....keep us posted Hope you are seeing Dr Specks He is awesome....have some chocolate for me from the chocalate island in the little breeze way mal...they are awesome

At Mayo this week!

[Al]

Went to my boyfriend's parents house in N Cal. Was great to relax and get away from reality! I live in Chinatown on Oahu. At my first doc appointment room now waiting for my rheumatologiest!

Don't take any guff from the docs, and let us know what happens!

Al

[manalolana]

Had some biopsies on my right leg yesterday. From 20mg of pred to today at 9mg... still trying to get my flares back to take advantage of being at Mayo. It seems like it is working today slowly; My eyes are swelling up again. I never thought that I would be happy to have flare ups. Ha!

I am sure it's nothing but found some dots on my brain during MRI that I am waiting to get insurance approval to see a neurologist. And seeing my rheumy Dr Warrington tomorrow at 4:30p to see if I have to stay longer or can go home with possible treatment options.

[Dirty Don]

Best to you Mana...you're doing the right things for yourself!! Keep at it! And let us know what happens for you!

[manalolana]

Sorry I will miss you I am going December 21st thru the 22-23 will arrive on the 20th....keep us posted Hope you are seeing Dr Specks He is awesome....have some chocolate for me from the chocalate island in the little breeze way mal...they are awesome

Sorry I will miss you as well LisaMarie! Will do! Sorry it's been hectic

[Al]

Sorry I will miss you as well LisaMarie! Will do! Sorry it's been hectic
Well, you need to get your money's worth, but, hey, you're on holiday...remember? (!)

Al

[manalolana]

I wish I was on vacation again. I am working this week remotely from Rochester, MN.

[Red]

Manalolana it must be cold for you in MN coming from Oahu i live in mn 70 miles from Rochester i hate the cold , if you have free time go to the mall of america its fun it has everthing.

[manalolana]

Manalolana it must be cold for you in MN coming from Oahu i live in mn 70 miles from Rochester i hate the cold , if you have free time go to the mall of america its fun it has everthing.

It's definitely colder than what I am used to. It's been years since I saw snow. I used to sort of live in Chicago for about 4 years and it's better than Chicago winter. Still can't wait till i go home. I pray that they give me some treatment options and get to fly home on Friday!

[Al]

It's definitely colder than what I am used to. It's been years since I saw snow. I used to sort of live in Chicago for about 4 years and it's better than Chicago winter. Still can't wait till i go home. I pray that they give me some treatment options and get to fly home on Friday!

Kinda makes it hard to get around, wearing a heavy parka, doesn't it? Ice is supposed to be shaved, not walked through....

Al

[manalolana]

Kinda makes it hard to get around, wearing a heavy parka, doesn't it? Ice is supposed to be shaved, not walked through....

Al
Al! Amen to that! Shaven with condensed milk, grass jelly, tea jelly, tapioca,taro and custard around to be eaten!

[Al]

Al! Amen to that! Shaven with condensed milk, grass jelly, tea jelly, tapioca,taro and custard around to be eaten!

Never tried it that way, Lana. Sounds like a real treat!

Al

[Red]

Ice fishing,snowmobiling,scrapping ice off yor car windows,going out every 8 hrs to start my truck ,paying $700.00 a month for heat it is all good lol i want to move.

[Sangye]

I love the cold and snow. Looove it. I make everyone around me nuts all winter by demanding, "Colder! Colder!" :laugh:

[pberggren1]

Ice fishing,snowmobiling,scrapping ice off yor car windows,going out every 8 hrs to start my truck ,paying $700.00 a month for heat it is all good lol i want to move.

You seriously don't pay 700 a month to heat your home in the winter do you?

[Dirty Don]

You're making me hungry AND cold! I live in the desert so I don't get cold so often...jeez...glad I don't work in an ice cream store too!! I find it interesting that my Wegs dog seems not to like cool mornings as it is here now. Don't do real well for first hour or so, then dog goes back to sleep, I feel OK, good enough to go practice and workout that is. Does temp affect Wegs? Hmmmmmm

[Red]

Dec,Jan,feb i pay 700.00 for electric and gas and then about 500.00 rest of the year

[manalolana]

You're making me hungry AND cold! I live in the desert so I don't get cold so often...jeez...glad I don't work in an ice cream store too!! I find it interesting that my Wegs dog seems not to like cool mornings as it is here now. Don't do real well for first hour or so, then dog goes back to sleep, I feel OK, good enough to go practice and workout that is. Does temp affect Wegs? Hmmmmmm

Funny you mentioned temp... i was suspecting humidity... It could be combination of things... but noticed that when I am in continental US, i have less inflammation vs in Hawaii. I was going to ask my rheumy at Mayo today.

[manalolana]

I just saw this... Have a friend that works at Billabong... Surf competition is on! Live Webcast - 2011 Billabong Pipe Masters In Memory of Andy Irons (http://vanstriplecrownofsurfing.com/billabongpipemasters2011/live-gb/)

[marta]

Hey Manalolana,

I was thinking about you when I was in Hawaii in September. I have to say that while I was in Kihei for two weeks was the BEST I've felt since this whole thing started. I don't know if it was the perfect temp, the humidity, the smell of the flowers, the 'island vibe', not sure but I felt like myself before the disease (on the inside - on the outside I'm still a Weggie).

My doc who trained at Mayo, said she has a very good friend who is a rheumy in Hawaii who is also into vasculitis. I'm not sure, you're probably seeing her, but if you are interested I can get her info for you from my doctor. Just PM me and I'll get it for you.

I'm doing everything in my power to find a place to buy on the Islands so that I can have my own perfect getaway from the disease. Once my dream becomes a reality, I'll look you up and we can raise a glass - with an umbrella in it.... oh to dream.

[chrisTIn@]

I just saw this... Have a friend that works at Billabong... Surf competition is on! Live Webcast - 2011 Billabong Pipe Masters In Memory of Andy Irons (http://vanstriplecrownofsurfing.com/billabongpipemasters2011/live-gb/)


When I see this, I want to go back to the North Shore!
Was there in june 2009, wonderfull!

I am really curious what your rheumy will say about you having less inflammation in continental US!

[pberggren1]

Dec,Jan,feb i pay 700.00 for electric and gas and then about 500.00 rest of the year

That's just crazy.

[Al]

Funny you mentioned temp... i was suspecting humidity... It could be combination of things... but noticed that when I am in continental US, i have less inflammation vs in Hawaii. I was going to ask my rheumy at Mayo today.

When I see this, I want to go back to the North Shore!
Was there in june 2009, wonderfull! I am really curious what your rheumy will say about you having less inflammation in continental US!

I was thinking about you when I was in Hawaii in September. I have to say that while I was in Kihei for two weeks was the BEST I've felt since this whole thing started. I don't know if it was the perfect temp, the humidity, the smell of the flowers, the 'island vibe', not sure but I felt like myself before the disease (on the inside - on the outside I'm still a Weggie).


Interesting! Maybe the change itself--in either direction--is helpful. It wouldn't be the first of life's phenomena where this is the case. I'd be interested in a follow-up.

I personally find Hawaii a terrific place for another reason: Cultural diversity is just part of the package. My niece's daughters are growing up speaking English, Pidgin, Mandarin from their paternal grandparents, some Danish from their paternal grandfather, and now, as their father just took a job with Adidas, German. My niece's wedding was striking. Lena is nearly 6 feet and a volleyball coach; her blond hair against the custom orange-red Chinese silk made appear, against the backdrop of her mostly shorter relatives-to-be, rather like the volcano goddess, Pele.

Al

[Dirty Don]

I wonder too at the effect of weather conditions/climate on our disease, if there are any at all. I live in the desert, I have a cough that won't go away and recently appears to be getting worse, but then I've had some dosage problems that are being dealt with...ANYWAY, I don't have any of the aches/pain that many others speak of...'light goes on in head', there's very little humidity here, so aches and pains aren't as bad, but sinus problems (valley fever and allergies) abound here without WG even in the mix!...............whaddya think? is it even viable?

[manalolana]

I wonder too at the effect of weather conditions/climate on our disease, if there are any at all. I live in the desert, I have a cough that won't go away and recently appears to be getting worse, but then I've had some dosage problems that are being dealt with...ANYWAY, I don't have any of the aches/pain that many others speak of...'light goes on in head', there's very little humidity here, so aches and pains aren't as bad, but sinus problems (valley fever and allergies) abound here without WG even in the mix!...............whaddya think? is it even viable?

I usually have inflammation issues in the eye area and sinus problems that causes facial pain. Anyhow, I did mention to my doc but he didn't pay much attention to it. I know one of my assistants who had RA moved to Las Vegas because he was in less pain in less humidity level.

[manalolana]

I am here at Mayo until next week now. I guess good news but me and my doc at home are puzzled that now all of sudden, except for liver, all tests are looking normal at Mayo. And I still don't feel too bad!

I still have the red marks on my lower legs. so far, no answers on that.

Again, very puzzled.

[manalolana]

Oh One thing that my doc here at Mayo mentioned.. apparently for ladies who may be fertile... pregnancies do wonders for autoimmune disorders. Those patience once they were pregnant, majority cases, they go in to remission.

My friend's daughter had bad case of Lupus and got pregnant and all of sudden she went in to remission and it's been 7 years since she has been ill.

[delorisdoe]

Interesting! I personally find Hawaii a terrific place for another reason: Cultural diversity is just part of the package. My niece's daughters are growing up speaking English, Pidgin, Mandarin from their paternal grandparents, some Danish


My cousins and his wife were in austrailia for medical school for the first five years of their 2 daughters lives...when they moved here they had the most addorable austrailian accents ever. They lost them quite quickly. :(

[manalolana]

Anyone taking Humira? Was in Mayo Dec 2011 and before we try RTX, they put me on Humira since that is the only immuno suppression I have not tried. So taking 40mg of Imuran daily, Predisone and Humira weekly.

[manalolana]

Curios. What symptoms do you guys have with our illness?

Thanks for your responses in advance!

[Pete]

Hello Manalolana,

When I first became ill, I had a middle ear infection in my right ear that did not respond well to antibiotics. This was followed in quick succession by a dry, non-productive cough, night sweats, fatigue, and loss of appetite. Chest x-ray initially showed a lesion that looked like a bullseye (think the Target logo) in my upper right lung. I spent a week in the hospital on IV antibiotics. I had biopsies of sinuses and lungs (bronchoscopies) that showed granulomas. This coupled with a high c-ANCA and some other blood anomalies suggested a high probability of WG. The official diagnosis was "mild WG". I was initially treated with 150 mg/day of cytoxan, 60 mg/day of prednisone, and a bactrim every day.

Initially, my primary wegs doc was a pulmonologist. I visited a wegs speciliast at Cleveland Clinic in June. She took me off cytoxan (after 16 months on it) and switched me to 15 mg/wk of methotrexate, 10 mg/day of prednisone, and a bactrim on M-W-F. I feel well now and do most of the things I enjoy doing. However, I get tired easily and I now have asthma for which I take singulair and pulmicort.

Hope this info helps.

Pete
dx 1/11

[manalolana]

Thanks Pete for sharing! Did you by any chance get fever regularly?

[annekat]

Pete, that sounds a lot like me, starting with the ear infection. But then things didn't happen as fast, I had recurring sinus infections for a couple of years, and some joint pain off and on, plus hearing and voice problems. Then it finally went into my lungs and I think I had something like that bullseye show on my Xray, too. A CT scan showed "numerous cavitary lesions" throughout my lungs, and the internist on duty suspected Wegs. This was confirmed by a nasal biopsy. Somewhere in there I suddenly noticed I had a saddle nose!

I had a few fevers and night sweats early on, but not every day. What really got my attention was a painful, nagging cough with bits of blood coming up. When it got bad enough, I went to the pulmonologist who is still treating my Wegs. I was on CTX for over a year, from 125mg down to 50mg, and am now on 10mg. MTX a week and have gone from 60mg. to 10mg. pred. Also, Bactrim DS 3 times a week, and Fosamax, which I was already taking for osteopenia. I don't live anywhere near a specialist center so haven't gone to one. I'm doing well, the lung stuff cleared up fast, the sinus stuff is taking longer but getting better all the time, I do have hearing loss that is probably permanent, so have hearing aids. Haven't had joint pains to speak of since starting treatment.

[Pete]

Yes, I had fevers while in hospital up to about 101 degrees.

Pete

[KathyB]

Looking back, I can see a few issues I tried to address on my own. But honestly, WG hit me like a ton of bricks and was diagnosed relatively quickly (compared to others in our forum). My symptoms included eating problems, acute renal failure, ear popping, and coughing up blood. No fever. But what I've learned from others in our forum is that each of us has had different symptoms and severity! No wonder we find ourselves and others scratching their heads! God bless Weggies!

KB