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.