Update: Saw the doc this morning!

[NikkiNicole]

Soooooo, I went down to see my doctor today. I left at 7:10 for a 9:50 appointment. Why so early? Well, traffic on the 101 headed SB in the mornings can be awful!!!! I got to the office at 9:00!!! It wasn't pretty. I just hunkered down in the office with my Kindle and waited.
OK, to sum up: No Rituxan right now. I am not in any life threatening danger so the risks of the meds outweigh any potential benefits. After we talked some more, I understood. I am going to be trying Imuran instead. First, I did some blood work to see if I will tolerate the Imuran. If I can't ... then we look into Cellcept. If those aren't options, well ... then we talk again.
There could be a number of things happening to me:
1- side effects from MTX
2 - Wegener's still being an active pain in the you-know-what
3 - fibromyalgia
4 - working too much on top of everything else.

So, doing my part I will be cutting back on the late hours. It's a step in the right direction because I don't notice being tired on my dayshifts, etc. I am also focusing on extra sleep!! I will definitely be focusing on those things. I'll be trying to put myself first.

This is day 2 of The Whole 30 and I am enjoying it because I love all natural foods anyway. I am certain the sugar withdrawals will start soon. I will power through.

I am feeling positive that I will start to feel better. At least, I am trying. I'm so tired and wished that I stayed home. On a brighter note, I didn't take my MTX this week so I am going to have some ibuprofen to get rid of this damn headache!

Hope you are all well!

[Debbie C]

Well all n all that is good news Nikki. If you don't need the rtx why take it. And no more mtx !!! when well they let you know about the imuran or cellcept ?
And ITS ABOUT TIME you start putting yourself first..I am sure everything that you are going to do combined will make you start to fell better...I hope so.

[drz]

I had good luck with Imuran but had to start with very low dosage and slowly work up to a therapeutic level. That way I had very few bad side effects. I think they were very careful with me since it was the only good option left for me due to kidney and lung damage. I sure hope it helps you too. I think the cut back in hours and getting more rest will also be a big help to you and the diet might also prove beneficial if it does stress you out at all. Best wishes for better health.

[me2]

It sounds like a good well rounded plan.

[Pete]

Sounds better. Hope you get some relief. More sleep coupled with a healthy diet should help.��

[mrtmeo]

Finally, some options.
I pray you feel better soon.

[NikkiNicole]

I sure am hoping this helps. I am really hoping that fibromyalgia will NOT be added to my list of afflictions.

[mishb]

What's another one to add to the list :razz::crying:

I'm glad they are trying something new. Fingers crossed it start working and you start feeling better again.

I agree with Deb, don't take the RTX if you don't need it yet. Leave it in the back pocket for later.

[lag713]

Glad to hear your appointment went well and you're feeling good about the new treatment plan. I know we have similar issues and my doctor also said that rtx would not be right for me given my disease activity and the inherent risks of using rtx. I haven't had any major side effects from taking mtx but my blood work keeps bouncing around between optimal and worrisome so I'll be trying an injectable mtx again.

Putting your health and well-being first should always come before choosing a stronger and riskier treatment plan. Many ailments (diabetes, hypertension, obesity, etc.) would be avoided or relieved with the basic self care of good sleep, good diet (and staying hydrated), exercise, low stress, etc. It's easier to look for another pill than to address our behaviors sometimes. I know I could definitely work on a better diet, more exercise, and less stress! I hope the Whole 30 works well for you!

[mrtmeo]

Praying it is not fibromyalgia, but if so, maybe this will help.
Vitamin D supplements reduce pain in fibromyalgia sufferers -- ScienceDaily (http://www.sciencedaily.com/releases/2014/01/140117090504.htm)

[lag713]

Note: The article mrtmeo linked was for fibromyalgia patients with a vitamin D deficiency. Vitamin D is one of the few vitamins you can actually overdose on. If you take vitamin D supplements then you should have your vitamin D levels checked with regular blood work.

[NikkiNicole]

I just got most of the bloodwork back and my ALT enzyme is through the roof. Has anyone had their Wegener's turn its attention on the liver? I am sure this is a fluke test and if I do it again it will be normal but it is worrisome to me, given that two weeks ago it was OK. I don't think it could go that bad that quickly right?
I was in a lot of pain last night. Shoulder, elbows, wrists, ankles, and knees were in agony and I have no idea why. It felt like I had been on a HUGE hike when really I went to the doctor, rested and then came to work where I sit. Not sure what to attribute that to.

Isn't this disease grand?

[mrtmeo]

Hi Nikki,
I don't want to scare you and this just an observation from a friend with RA.
I have a friend that has RA that was treated, I believe with mtx.
She had her liver shut down and another time had a rupture in her GI, can't remember where.

I wonder if you are having a bad reaction to mtx?
Look up the side effects of mtx and high liver enzymes.
Did your billirubin rise and/or alkaline phosphatase too?

[drz]

Many of the meds we take can impact our liver and/or kidney so routine monthly labs to monitor the functioning of these vital organs is important. Some times it is necessary to adjust or change the meds to protect these organs. Any abnormal test result though should be re-check for your safety as problems can develop suddenly.


I just got most of the bloodwork back and my ALT enzyme is through the roof. Has anyone had their Wegener's turn its attention on the liver? I am sure this is a fluke test and if I do it again it will be normal but it is worrisome to me, given that two weeks ago it was OK. I don't think it could go that bad that quickly right?
I was in a lot of pain last night. Shoulder, elbows, wrists, ankles, and knees were in agony and I have no idea why. It felt like I had been on a HUGE hike when really I went to the doctor, rested and then came to work where I sit. Not sure what to attribute that to.

Isn't this disease grand?

[Thinker]

My liver enzymes all shot up unexpectedly a few months ago. The next time they were checked they had started going down, and at my last labs about a month ago, one was normal, and the other two just slightly above. Sorry I can't remember which ones but can look them up. About the same time they went up I also started having episodes of nausea, vomiting and sometimes diarrhea. My rheumatologist thinks it's because I got gastroenteritis (stomach flu), as an infection can increase liver enzymes and at the time was on Cytoxan so was very immunosuppressed. I'm still having episodes of vomiting every two to three weeks so am going to ask him about that on my next appointment. I did research gastroenteritis among people who are immunosuppressed, and yes it can last weeks to months or even years. Hopefully it will improve, but whatever the cause am glad they went down as yes, it is worrisome.

Good luck with the Imuran. I started on a dose of 50 mg about a month ago, then increased to 100 mg 2x per day about a week ago. I felt great on the 50 mg, noticed more tiredness, some slight nausea, and broke out in canker and cold sores with the 100 mg. Seems to be improving though, and I've read that a lot of new medications/dosages take a couple weeks for your body to adjust.

[mishb]

Nikki, have you started taking anything different in the last two weeks.

My bloods went through the roof for my liver over a four week period (ie. 4 weekly blood tests)
My specialist narrowed it down to me taking a multi vitamin. I stopped the multi vitamin and the next blood test everything was back to normal.

It could have been a number of ingredients or just one within the vitamin tablet that caused it. My specialist said that they had only seen this once before.
Reading up on this further, I believe it could have been the magnesium within the vitamin tablet.

It's just a thought, in case you have started something different since your last blood test.

[NikkiNicole]

Nothing has changed. I haven't even been taking any ibuprofen or anything for several months. Literally the only thing I take is my MTX and my thyroid meds and those have always gone together. I am sure it's a fluke. If not, I would think sjhe would have called/emailed by now. I did send her a message offering to do it again.

[Alias]

Increases/fluctuations in liver enzymes are consistent with MTX use, so that could be it. I treat with weekly MTX injections and fortunately I tolerate it pretty well. My liver enzymes did rise steadily, and eventually my doctor prescribed leucovorin to be taken the day after MTX. This has brought my levels down to normal or near normal. At their highest they were about twice normal values. Anyway, hopefully this won't be an issue for you anymore since you won't be on MTX anymore? I guess this is another example of one of the fun features of this disease; the treatment can cause as many problems as the illness!

(btw I had my vitamin D level checked not long ago and it was high, which was a surprise since I live in Alaska and it is a long, dark winter. I had been taking a supplement per doc's instructions. My B12 was low... so now I'm supposed to discontinue the D and instead take B12. Sometimes I think I need a spreadsheet to keep track of all this.)

[NikkiNicole]

I heard back from the doctor, she wants me to retest in a few weeks. If it goes back down then we know it was the MTX that was the culprit. If it doesn't go down then we will see what the problem is. I am to continue to abstain from alcohol ... which I am anyway with The Whole 30 plan so it doesn't matter. Not to mention if my liver isn't happy I don't want alcohol!!!
I am sure it will return to normal in a few weeks. My blood work is always pretty except my ANCA and CRP. Why would now be any different?

[mrtmeo]

I don't know if mtx has an accumulated effect or not, but that could be something to ask the dr.

[mrtmeo]

I just got most of the bloodwork back and my ALT enzyme is through the roof. Has anyone had their Wegener's turn its attention on the liver? I am sure this is a fluke test and if I do it again it will be normal but it is worrisome to me, given that two weeks ago it was OK. I don't think it could go that bad that quickly right?
I was in a lot of pain last night. Shoulder, elbows, wrists, ankles, and knees were in agony and I have no idea why. It felt like I had been on a HUGE hike when really I went to the doctor, rested and then came to work where I sit. Not sure what to attribute that to.

Isn't this disease grand?

I found this clinical cases discussing mofetil and kidney transplants where a 14 year old with weg's had a rising ALT that made them take him off of the mtx because it was causing it here

Mycophenolate Mofetil-Related Enterocolitis and Weight Loss: A Pediatric Case Series (http://www.hindawi.com/journals/cripe/2012/624168/)
"Case 3. A 14-year-old male with Wegener’s Granulomatosis was diagnosed at 8 years of age after presenting with pulmonary hemorrhage. At that time, he underwent percutaneous renal biopsy, which showed pauci-immune sclerosing crescentic glomerulonephritis, consistent with Wegener’s Granulomatosis. He was also found to be p-ANCA positive. The patient was initially treated with methotrexate for the first three years after diagnosis, but due to rising aminotransferase levels, methotrexate was transitioned to azathioprine. Aminotransferase levels improved but did not normalize on low dose azathioprine, so the patient was ultimately transitioned to MMF."

[NikkiNicole]

Thank you for the info. I'm not going to worry until after we retest. I don't think the short term use of MTX (this round was October to now) could cause such a spike. It was waaaaaaaaaay normal two weeks ago and now it is waaaaaaaaaaay not. But, I am no doctor.

[mrtmeo]

Yes, if it is way higher than 2 weeks ago, it must be an anomaly.
Keep us updated when u find out.
Are you doing any better, yet?

[NikkiNicole]

No. I'm not well. I still have a headache. My joints are ANGRY!!! I am uncomfortable and just want to go home and lie down. I just cancelled plans with a friend for the morning so that I can sleep some more. I may have to call out of work tomorrow if I feel worse. I don't know if I can drag myself in for another night of this.

[mrtmeo]

Have u tried the ibuprofen for the headaches?
That is an immune suppressor.

[NikkiNicole]

I hadn't taken it for so long because the pharmacist told me not to. Little did I know that he thought I was taking a MUCH larger dose so he was warning me against it. So I've been muddling through with aches/pains/headaches for months. I am in agony again right now. My shoulder, my elbows, my wrists, a couple fingers, my knees, my ankles and my neck is throbbing. I haven't done anything to cause this!!! 3 hours of work to go.
I plan on sleeping tomorrow. Hopefully I'll sleep for awhile. I'll measure how I feel when I get up and then I might have to miss work. Things are just getting progressively worse tonight.

[mrtmeo]

Something is not right.
I hope they give you something to stop the disease process soon.

[NikkiNicole]

Update: still sick!
I didn't take my MTX this week and I am still feeling awful. My head is killing me ... still. My top back teeth hurt, I feel like I ran a marathon again. I am so tired of this. Words cannot describe how tired of this I am.

[Debbie C]

Note: The article mrtmeo linked was for fibromyalgia patients with a vitamin D deficiency. Vitamin D is one of the few vitamins you can actually overdose on. If you take vitamin D supplements then you should have your vitamin D levels checked with regular blood work.

You may not be able to overdose on them but to many can put you in a toxic level. So you diffenently need checked for that espcially since its always sunny were you live .

[NikkiNicole]

My vitamin D test came back just fine, more on the low side but still within range. I do spend a lot of time indoors but I am also outside a lot.

[mrtmeo]

Did u get the results of the tpmt test yet?

[Debbie C]

Nikki,are you still taking pred also ? Because I read you are not supposed to take ibuprofan with pred. But maybe you are sick because of mtx withdrawal ??????

[NikkiNicole]

No TPMT results yet. I am patiently waiting. I got my myeloma results. Those are fine so my cancer remains in remission, that's always good news in the middle of everything.
I have to stay late tonight at work because someone called in sick. This makes me very upset because I feel so horrible. Oh well.

[NikkiNicole]

I am not on any prednisone. I have only been off the mtx for 3 days. I just feel like everything gets a little worse every day.

[mrtmeo]

I am not on any prednisone. I have only been off the mtx for 3 days. I just feel like everything gets a little worse every day.

I am not sure how long the active metabolite of mtx lasts, but I'm sure it is longer than 3 days.
That is good news that the cancer is in remission and pray it always stays there.
Your dr didn't have you on prednisone while you wait for the maintenance?

[NikkiNicole]

I've 3 prednisone tapers. There never was really any improvement with the prednisone.

[Pierre42]

My specialist once mentioned to me that NSAIDs (Non Steroidal Anti Inflammatory Drugs) should be avoided as much as possible while on Prednisolone.

The interaction between orally administered non-steroidal anti-infl... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/17485922)

"These findings suggest that the combination of NSAIDs, even selective COX-2 inhibitors, with prednisolone may be contraindicated due to the potential for serious adverse effects on the kidneys, the platelets, and the gastrointestinal tract."

TANSTAAFL, YMMV, etc

[annekat]

Aside from the mysterious liver issue, it all sounds good, Nikki! And you are on the right track with the diet.

[mrtmeo]

I've 3 prednisone tapers. There never was really any improvement with the prednisone.

My mom has MPA and she never got any improvement with prednisone either.
It is interesting that weg's folks usually have a good response to prednisone.

[mrtmeo]

Hi Nikki,
Any news, yet if you can start the imuran or not?

[NikkiNicole]

I haven't received any new yet. I am emailing the doctor to update her on what's happening with me. The headache remains (Day 19), today my face is on fire (body is cold) and flushed. I am sore everywhere, my nose is throbbing. My teeth HURT. I'm just miserable.

[Pete]

Hope they get you onto an effective treatment plan soon. Sorry you're feeling so badly.

[NikkiNicole]

It's super frustrating. I just want a somewhat normal feeling. :crying:

[mrtmeo]

I haven't received any new yet. I am emailing the doctor to update her on what's happening with me. The headache remains (Day 19), today my face is on fire (body is cold) and flushed. I am sore everywhere, my nose is throbbing. My teeth HURT. I'm just miserable.
Your symptoms sound familiar but I can't remember where I read them.
Having a headache this long is serious.
Does anything help an ice pack or anything else?

[NikkiNicole]

Some of the symptoms fall under the Fibromyalgia symptoms and I believe that is why she mentioned it in our appointment. I looked it up after she brought it up. I had been hoping to rule it out in my own, non-doctor, brain but a lot of it screamed that it was what was wrong with me ... on top of everything else. UGH! But, I am not going to think that is what it is until she tells me that is what it is.
My eyes want to go cross-eyed right now. Nothing seems to help this headache. It's there constantly, w/ random shooting pains behind my eye. I took 2 Norco last night and the only reason it didn't hurt anymore was because I was asleep. I woke up this morning and it was right back where it was before.
I'd give anything to go lie down in my bed right now. I'd give anything to feel halfway decent ... I'd even take the horrendous fatigue. Anything is better than this

[mrtmeo]

Some of the symptoms fall under the Fibromyalgia symptoms and I believe that is why she mentioned it in our appointment. I looked it up after she brought it up. I had been hoping to rule it out in my own, non-doctor, brain but a lot of it screamed that it was what was wrong with me ... on top of everything else. UGH! But, I am not going to think that is what it is until she tells me that is what it is.
My eyes want to go cross-eyed right now. Nothing seems to help this headache. It's there constantly, w/ random shooting pains behind my eye. I took 2 Norco last night and the only reason it didn't hurt anymore was because I was asleep. I woke up this morning and it was right back where it was before.
I'd give anything to go lie down in my bed right now. I'd give anything to feel halfway decent ... I'd even take the horrendous fatigue. Anything is better than this

Could it be a herpes infection?
Do you take vitamin C?
My mom would get jolting pains from herpes and 4gms vitamin c every day for 3 days would stop it.
Each day it got better and better.
Just a thought.

[NikkiNicole]

I do take vitamin C. I eat very well.
It could be cluster headaches.

Whatever it is ... I'm over it.

[annekat]

I hate to see you so miserable for such a long time, Nikki, and dealing with your work load at the same time. I hope you hear from the doctor soon. Something's gotta give here... At least, the diet plan you are on sounds great, though maybe it hasn't had time to take effect yet.... The headaches need to stop and someone needs to get to the bottom of them.

[NikkiNicole]

Thank you, everyone. The email has been sent. Unfortunately, it was after she'd gone home for the night but I am hoping tomorrow she might have some answers for me. I know I need sleep. I will be down for the count as soon as I get home.

[mishb]

Sounds like you have a chronic sinus infection which will cause the headaches, burning face, sore teeth and saw nose and jaw.

I hope you get an answer soon

[NikkiNicole]

I heard back from the doctor today, she wanted to know all I have tried for my headache. I laid it out and explained that I feel like I have tried everything. Even the big guns. She wants me to go back in and retest the ALT levels next week, and still hasn't received the TPMT results. She won't start me on Imuran until we have the ALT results back because if my liver is malfunctioning I can't take the Imuran ... or any other drug for that matter.
I am sure it will be fine.
I need a week of sleep

[mrtmeo]

Praying your ALT levels are normal and you can start something to stop the pain.

[Debbie C]

Nik,are you able 2 take a couple days off and have a long weekend to relax. Like a Fri and Mon ? Hope you get the results soon. Did they think about a mri of the brain ?

[NikkiNicole]

I am actually off work Friday and Saturday and don't work until Sunday night so I plan on resting as much as possible on those days. There is laundry that needs doing but that is easily done while resting. Unfortunately, I have to hold over AGAIN tonight and work 12 hours because we have two people out sick. One who is actually sick and the other who has the man-flu. The rest of us are working ourselves to the bone ... it's ridiculous.
I emailed doc again this morning because my headache has ramped up. The eye pain is near constant now and it feels like bolts of pain are trying to escape out the back of my head. My right eye is slightly blurrier than the left now so I had to take out my contacts and put on my glasses. Still blurry.
My misery continues. I even did as the doctor suggested to try and get rid of my headache w/ no luck.
Kill me now. If these are cluster headaches, I understand why people call them 'suicide headaches' you just start wishing for death to numb the pain. (no, I don't actually want to die, I just want to feel no pain!)

[Thinker]

I agree with Debra C asking if they did a MRI of your brain or a CT scan of your head. Right after I was diagnosed they did a full body CT scan, told me I would glow by the time they were done. I'm glad they did though because Wegs can affect any part of your body and you never know. I'm concerned to hear about your severe headache that seems to be getting worse and blurry vision. Keep us posted and sending positive healing thoughts your way.

[mrtmeo]

What medications have you tried for the headaches, antihistamines, opiates, naproxan, ibuprophen, tylenol?

[Debbie C]

Nikki,you said you were going to start putting yourself first.So if you are still this bad by the time you have to work Sunday...CALL OFF. All the hours you are putting in is not helping at all and until you find out what the problem is you need to "chill". And why do you have to wait until next week to get rechecked ? Have you tried taking any benedryl in case it is a bad sinus infection ? Feel better and get some sleep:hug2:

[NikkiNicole]

I have tried ibuprofen both small dose and big. I've tried aleve. I've tried Tylenol. I have continued with sinus rinses. I've used hot and cold compresses. I even drank a cup of caffeinated tea to see if that would help. Nope. Nothing. The only time I found relief was when I took a Norco and passed out cold. When I woke up, it was back.
As I sit here now, it feels more sinus related as my teeth are throbbing, my face feels stuffed full of cotton (yet no congestion) and the rest of my head feels like it is being squeezed like a zit. There is also a lot of pressure behind my eyes right now.
7 hours until I will be in my pajamas for 2.5 days.

[mrtmeo]

I have tried ibuprofen both small dose and big. I've tried aleve. I've tried Tylenol. I have continued with sinus rinses. I've used hot and cold compresses. I even drank a cup of caffeinated tea to see if that would help. Nope. Nothing. The only time I found relief was when I took a Norco and passed out cold. When I woke up, it was back.
As I sit here now, it feels more sinus related as my teeth are throbbing, my face feels stuffed full of cotton (yet no congestion) and the rest of my head feels like it is being squeezed like a zit. There is also a lot of pressure behind my eyes right now.
7 hours until I will be in my pajamas for 2.5 days.

It sure sounds like an extreme flare of inflammation.
Did the ER do a CT scan of your sinuses?
I pray they get you on something to stop this before it causes damage.
Sleep well.

[annekat]

It sounds what I've heard people say they felt at the beginning of Wegs, or when it gets bad enough for them to get diagnosed. In fact, while my lungs were getting all the attention right before dx, my head was going through something a lot like what you are experiencing. Only yours sounds worse. But I did have the headaches, achy teeth, pressure around eyes, and a lot of sinus inflammation, in my case, in the maxillaries, making my cheeks red and hot on both sides of my nose. I was on antibiotics and pred, and in the hospital overnight getting tests. I'd think your doc would have thought of all these things we are thinking of, so it's hard to understand why nothing is being figured out.

[kaysee]

Nikki, I don't have any advice for you but I feel your pain. This has gone on far too long. I pray you get some relief soon. Take care of yourself.

[NikkiNicole]

I know I've said this before but thank you everyone. Thank you SO much. As the minutes tick by ... things are getting worse. I can't even chew now. It hurts. My throat is a bit scratchy and I am hoping that I didn't get a tiny version of what has been knocking people down for over a week at a time. *crosses fingers*
5.5 hours to go. But, who is counting??

[annekat]

It doesn't sound like a tiny version of anything! By now, you are just about off work and can go home and sleep for two days. We will be waiting to hear if that brings you some relief!

[mrtmeo]

I'm with Anne on this.
It sure sounds like weg's damage going on and should be treated before permanent damage happens.
I don't know the saddle nose starts, but preventing it sounds like the pain is damage going on.

[me2]

Since I am on what is considered to be an effective treatment for WG when I go to my doctor with symptoms similar to yours he automatically puts me on antibiotics to treat sinus infection. As someone earlier mentioned a sinus infection can cause these symptoms.
My doc now lets me keep antibiotics at home and I take them myself when symptoms get bad. If it doesn't work then I go see him and we can rule out infection.
Of course this leaves some kind of virus as a possibility too.
I hope you get some relief and more importantly- get better soon.

[NikkiNicole]

Hello again!
I had two full days off and most of today and ... I feel no better. How crappy is that? Tonight before work, I noticed my throat is getting a little worse. I also feel "off". Like ... getting sick "off". Yippee. It's only going to get worse because I have the week from hell. I work til 5am tonight, I am supposed to go to the doctor at 10am tomorrow but I am going to reschedule. I work 3-3 tomorrow night, and then 1-1 Tuesday, a marathon of a shift Wednesday, etc.
I'll never get better at this rate. But, I was hoping for SOME improvement having two days off.
*sigh*

[Pete]

Please don't reschedule your doctor appointment. That's the most important thing you can do to regain your health. Work will get along without you. Good luck! Hope you feel better soon!!

[Debbie C]

Really Nikki,get to the dr. and see whats up before things get REALLY bad. You can't keep working like that,it will just drain you more and make things worse. And hopefully it is just a sinus infection.

[annekat]

Really Nikki,get to the dr. and see whats up before things get REALLY bad. You can't keep working like that,it will just drain you more and make things worse. And hopefully it is just a sinus infection. Yes! I used to work under these conditions of feeling like crap, before I knew I had Wegs, and it was miserable, but the schedule was nothing like yours, nor the work as demanding and stressful! If you have a sinus infection, you need some antibiotics and prednisone to clear it up, ASAP! I don't blame you for wanting to reschedule your doc's appt. after being up 'til 5 and having to then work at 3. I wish someone at work could take over that shift so you can get the attention you need! Otherwise, It IS just going to get worse, and you might end up in the ER. I can't believe your doc is missing whatever this is and wish she could just prescribe some antibiotics over the phone! I am worried about you! :unsure:

[NikkiNicole]

I had my bloodwork done today to recheck the ALT levels in my liver. I also talked w/ my doctor a little bit. I didn't go to the doctor this morning. I know, I know I should have but I couldn't get up. I was desperate for sleep. I will get in to see the doctor this week. I have to. My headache seems to be transient. I don't feel as much tension in my skull, but I still have the shooting pains behind my eye and jaw pain. The jaw pain is crazy. I was OK, then I had some tuna salad I made (Whole30 approved) which isn't hard or crunchy at all and now my jaw is screaming at me.
I'm curious to see what the blood work says ...

[mrtmeo]

I had my bloodwork done today to recheck the ALT levels in my liver. I also talked w/ my doctor a little bit. I didn't go to the doctor this morning. I know, I know I should have but I couldn't get up. I was desperate for sleep. I will get in to see the doctor this week. I have to. My headache seems to be transient. I don't feel as much tension in my skull, but I still have the shooting pains behind my eye and jaw pain. The jaw pain is crazy. I was OK, then I had some tuna salad I made (Whole30 approved) which isn't hard or crunchy at all and now my jaw is screaming at me.
I'm curious to see what the blood work says ...

I sure hope those jolts behind your eyes are not weg's attacking your eyes.
There is a nerve at the back of the jaw called the Trigeminal nerve that can sometimes cause people issues and can effect the eyes.
It is called Trigeminal neuralgia.

[annekat]

I sure hope those jolts behind your eyes are not weg's attacking your eyes.
There is a nerve at the back of the jaw called the Trigeminal nerve that can sometimes cause people issues and can effect the eyes.
It is called Trigeminal neuralgia. Funny you should mention trigeminal neuralgia, as I had it for awhile, more than 25 years ago. It wasn't constant, but intermittent stabbing pains in the area of my left temple, near the eye. As I understand it, the trigeminal nerve is quite long, one on each side of the head, so there could be a number of areas that it might affect. My doc at the time said it could be a "distended" blood vessel pressing on the nerve. I had an MRI at the time and am not sure whether he actually saw something, but at least he ruled out some other things. The treatment was the drug amitriptyline, and it worked, though it made me drowsy and a little dizzy at first. After a few years, I had the feeling I might be over the TN, so stopped the drug. The TN was gone, and I haven't had it since the early nineties or so. I guess the blood vessel became less distended or moved so it was no longer pressing on the nerve.

[annekat]

Another name for trigeminal neuralgia is "tic douloureux" and it is said to be more common in older people. But I was only in my late 30's when I got it.

[NikkiNicole]

While googling my symptoms (I know ... we should never do this) TM came up as one of the possible reasons for my pain. It makes the most sense from what I have read about it. I admit, I am a little gunshy about mentioning things to my doctor because I feel like I am telling them I know more about my health than they do, but in this instance, I feel like I should. I am going to see my regular doctor soon. It looks like Thursday I'll be able to get into her office. I will bring it up to her because it has been affecting my jaw, my head, my temple, my everything.
If I haven't said it a thousand times already, I am SO thankful to have found this forum.

[mrtmeo]

Funny you should mention trigeminal neuralgia, as I had it for awhile, more than 25 years ago. It wasn't constant, but intermittent stabbing pains in the area of my left temple, near the eye. As I understand it, the trigeminal nerve is quite long, one on each side of the head, so there could be a number of areas that it might affect. My doc at the time said it could be a "distended" blood vessel pressing on the nerve. I had an MRI at the time and am not sure whether he actually saw something, but at least he ruled out some other things. The treatment was the drug amitriptyline, and it worked, though it made me drowsy and a little dizzy at first. After a few years, I had the feeling I might be over the TN, so stopped the drug. The TN was gone, and I haven't had it since the early nineties or so. I guess the blood vessel became less distended or moved so it was no longer pressing on the nerve.

That is very interesting.

[annekat]

Yeah, I wrote TM but realized that is something else and changed it to TN for trigeminal neuralgia. But TM involves the jaw, so that could be you, too. I hear it can cause a lot of pain but don't know if it goes to the eye. But the temple is pretty close to the jaw. Sounds like you are making progress getting to the bottom of what it could be, without the help of a doc.

[mrtmeo]

While googling my symptoms (I know ... we should never do this) TM came up as one of the possible reasons for my pain. It makes the most sense from what I have read about it. I admit, I am a little gunshy about mentioning things to my doctor because I feel like I am telling them I know more about my health than they do, but in this instance, I feel like I should. I am going to see my regular doctor soon. It looks like Thursday I'll be able to get into her office. I will bring it up to her because it has been affecting my jaw, my head, my temple, my everything.
If I haven't said it a thousand times already, I am SO thankful to have found this forum.

Do you mean TN, instead of TM?

[annekat]

I think you should mention both TM and trigeminal neuralgia to your doc on Thursday. (I don't know if the latter is commonly called TN.)

[NikkiNicole]

Isn't that what we all have to do? Research our own situations!
I am really hoping that there is an end in sight to this pain!!!!

[annekat]

Do you mean TN, instead of TM? Yes, and I edited it. I'm not sure if people commonly say it that way or if they just say trigeminal neuralgia. I do know that TM is another condition that involves the jaw, but haven't googled it lately. And yes, Nikki, you should google things. How else do we get any quick info on anything? We just have to be smart and figure out which info seems the most legit.

[NikkiNicole]

I am printing up things to take to the doctor on Thursday. I've tried not wearing my contacts, but it still doesn't help so I am wearing them again because it's hard to see as good with my glasses. (I hate not having complete vision no matter which way I move my eyes).

[annekat]

Isn't that what we all have to do? Research our own situations!
I am really hoping that there is an end in sight to this pain!!!! Yep, what other choice do we have? A lot quicker than getting info from doctors. I don't know what people did before the internet. I, too, hope there is an end to your pain, and SOON!

[annekat]

Oops! The condition I was thinking of is TMJ. TM means Transcendental Meditation. Did not google for long, but here's Mayo on it:
TMJ disorders Definition - Diseases and Conditions - Mayo Clinic (http://www.mayoclinic.org/diseases-conditions/tmj/basics/definition/con-20043566)

And here's the one for Trigeminal Neuralgia:
http://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/basics/definition/con-20043802

[mrtmeo]

Yeah, I wrote TM but realized that is something else and changed it to TN for trigeminal neuralgia. But TM involves the jaw, so that could be you, too. I hear it can cause a lot of pain but don't know if it goes to the eye. But the temple is pretty close to the jaw. Sounds like you are making progress getting to the bottom of what it could be, without the help of a doc.

Did you mean TMJ?

[annekat]

Did you mean TMJ? Yes, I meant TMJ, as explained above with links. So I think Nikki should ask about both TMJ (temporal mandibular joint) disorder and trigeminal neuralgia. The old Weggie brain fog strikes again.

[NikkiNicole]

My dentist looked into TMJ a long time ago but, I didn't have all the factors. TN sounds more like what I have been having. Even with chewing the softest of items I feel like I am going to lose my jaw. Not all the time, just sometimes. My friend has TMJ and I hear her clicking away when she eats.

[annekat]

My dentist looked into TMJ a long time ago but, I didn't have all the factors. TN sounds more like what I have been having. Even with chewing the softest of items I feel like I am going to lose my jaw. Not all the time, just sometimes. My friend has TMJ and I hear her clicking away when she eats. I know trigeminal neuralgia can vary in severity and amount of pain and mine was less than what you are experiencing. If that's what you have, it is not life threatening, unless it is being caused by something life threatening pressing on the nerve.... In any case, it can be treated by drugs or surgery to alleviate the pain and perhaps remove the cause. Sounds like an MRI might be in order.

[NikkiNicole]

Once again, I have returned to the point of feeling frustrated. TPMT results are STILL not back yet and this is week 3 without my MTX. I don't know if that is why my nose was bleeding last night, or if that is why my nose also feels like someone punched me in the face. Still have a headache (day 26 for those keeping count but it isn't as bad), pressure behind my eyes, my joints screamed at me last night and I hadn't even done anything.
And the kicker???????????

My blood work was perfect. Blood counts all wonderful, ALT back to a low range, everything looked absolutely beautiful. I shouldn't complain. That's fantastic that those levels are good. CRP isn't back yet but I am sure that will be right at the top of the normal range like it was last time. Our tests say it should be under 0.5 and mine was exactly 0.5 last time. I bet it will be the same this time around.

It frustrates me to the point of tears. Something is wrong and yet, NOTHING shows up that the doctor can say "Oh! That's what's wrong." This is how it was back in the beginning of all of this. Everything except my CT and that ANCA test were beautiful. I've always had amazing blood work. Good cholesterol, perfect low blood pressure, etc. So ... WHY DO I FEEL LIKE I AM GOING TO DIE?

I do work a lot, this is true. But, I always have. This is why I know there is something amiss. I have been eating 100% clean and amazing for 16 days. I sleep like the dead when I do sleep and I was just off for 2.5 amazing days.

This makes me feel like I am crazy. I don't like it. I'm so upset.

[mrtmeo]

That's great that your blood work came really good.
With vasculitis, it can effect any part of the body where there are blood vessels and this is what makes it so frustrating when treatment isn't working.
Hopefully, they can try the imuran and see if you can get some relief.
I'm glad the headaches have let up a bit.

What were your symptoms when you first got diagnosed?

[NikkiNicole]

I had a spot in my lung and felt like I was fighting a bad cold ALL THE TIME. The horrendous fatigue, etc. Kind of like how I feel right now. My first rheumatologist said it wasn't Wegener's. My second called the pathologist who did my lung biopsy and was informed that it was. So there you go. I've never been as bad off as others. I am lucky.
However, I am getting depressed over how I feel and there's no escape ........

[mrtmeo]

I had a spot in my lung and felt like I was fighting a bad cold ALL THE TIME. The horrendous fatigue, etc. Kind of like how I feel right now. My first rheumatologist said it wasn't Wegener's. My second called the pathologist who did my lung biopsy and was informed that it was. So there you go. I've never been as bad off as others. I am lucky.
However, I am getting depressed over how I feel and there's no escape ........

If the TPMT test is not in, yet, why doesn't the dr have you on an alternative, such as Cellcept for now?

[annekat]

I had a spot in my lung and felt like I was fighting a bad cold ALL THE TIME. The horrendous fatigue, etc. Kind of like how I feel right now. My first rheumatologist said it wasn't Wegener's. My second called the pathologist who did my lung biopsy and was informed that it was. So there you go. I've never been as bad off as others. I am lucky.
However, I am getting depressed over how I feel and there's no escape ........ I always say I'm better off than many others. But with you, even though your bloodwork has been good, you always seem to have a lot of pain and unexplained symptoms, which makes you seem not that well off! It is disheartening that a fellow Weggie has to go through all that even while not seeming to be flaring or anything that can really be pinpointed. I have had my share of feeling totally crappy, especially when first treated and really unable to function, and a few times since then, but I really can't complain when hearing of what you go through, as well as those who are sicker, of course. I think you need to get a little bit luckier and get some answers! Your depression is completely understandable, and I wish you some relief from all of it.

[NikkiNicole]

The doc called in a prescription of 800mg of Ibuprofen to hopefully help with the joint pains I have been having a lot. I just don't know. Honestly, today I am down in the dumps when I should be happy that my labs all looked good. It makes me wonder if I am crazy. is it in my head? Is this what fibromyalgia is?! My brain is misfiring and making me have pain?
I don't know.

[annekat]

The doc called in a prescription of 800mg of Ibuprofen to hopefully help with the joint pains I have been having a lot. I just don't know. Honestly, today I am down in the dumps when I should be happy that my labs all looked good. It makes me wonder if I am crazy. is it in my head? Is this what fibromyalgia is?! My brain is misfiring and making me have pain?
I don't know. I wish we could answer those things. I have no knowledge of fibromyalgia, except that it's painful, and I really hope you don't have it! I hope your doc can refer you to some other specialists who can help, and soon! And no, I don't think you are crazy, or that it is in your head!

[mishb]

When is your next specialist appointment Nikki? I don't think your normal doctor is up to scratch with WG and it's crazy symptoms :unsure:

I have two friends with trigeminal and they were so bad. It's also called the suicide disease. Your symptoms sound a little different from theirs, thankfully
In regards to the fibro, this can be helped by changing your diet. You are in the process of changing your diet and therefore I think you could also rule out fibro.

I do worry about you as you are my little sis :crying:
It annoys me when you have to fill in for work for people that are not feeling well, yet you can't seem to get any down time :thumbdn:

You are definitely not crazy, but you do need to get away from the phones and computers at work for a while.

[drz]

Would it be possible for you to go to some Center of excellence, like Mayo clinic, to get a through assessment of your Wegs and what ever else is going on to cause your feeling miserable?

Thousands of people go there every month to get assessed and get care. Mayo also has an extended consultation net work set up to consult with a few hundred other clinics on difficult cases and I think you would certainly qualify. Check and see if any of your doctors or clinics have access to this consultation now or inquire how you can get to Mayo or similar type facility for a good work up. You certainly need something done to get some relief!

[mrtmeo]

Hi Nikki,
Worried. Haven't heard any update for awhile.
How are you doing?

[NikkiNicole]

My headache actually was gone for like 4 days and as of Saturday it came back. I also am feeling facial pain almost daily. I get very flushed in my cheeks and I feel like I need to lie down. I got the results back yesterday but, of course, it doesn't say what they are so I just emailed the doctor to see whats up. I still need to see my regular doctor about my headache. She's booked up all the way until next week so I am trying to figure something out.

[NikkiNicole]

UPDATE: Doc just wrote me back. I can't take Imuran. So ..... Cellcept is our next attempt. I will pick it up at the pharmacy later tonight and start it in the morning, one pill twice a day and in two weeks, test my labs and see if I can then move up to two pills twice a day.

Something has to give. My face is already flushing again today and the headache is getting a little worse. Oh yay.

[mrtmeo]

Finally, something to try.
I pray it works well for you.

[Debbie C]

Nikki,do you think part of it can be your sinuses ? I know you guys have been getting alot of rain around there ( I think where you are ) . I am like a weather man my sinuses go crazy when the weather chnges. Right now I have to make in appt. to see in ent because my nose has really been bothering me so my doc at CC wants me checked out. And my teeth hurt alot and I also get bad headaches with the weather change..... Just thinking...hope the Cellcept helps.:hug2:

[NikkiNicole]

We only got a day of rain. It's gorgeous otherwise. It's really quite sad.

I am crossing my fingers that my prescription is ready at 9ish PM tonight when I go on my lunch break so I can get it!!!

[LisaMac]

I'm new here so you don't know me, but my heart is breaking for you. I wish you could rest your body more and have less pain. My best to you, new friend.

[NikkiNicole]

Thanks LisaMac! Welcome to our forum. I've read your stories and I have been too stunned to speak. I hope that you are in a good place right now. I will get there. The things I have to deal with pale in comparison to others struggles. It's hard to whine right now when my dear friend is about to start chemo for very aggressive cervical cancer. A cancer that if they checked only a week or so later, she wouldn't be able to fight back against. It really shut me up as far as whining goes.

Don't get me wrong, I still whine ... I just realize that my problems are manageable right now. Things could be much worse.

[LisaMac]

So true, friend. There is always someone sicker than ourselves. I do find helping others gets my eyes off of my woes. I'm sorry for your friend and hope she gets better.

[NikkiNicole]

We all have our own battles though. SO glad you are here with us to share and help others. We can always use another set of ears for our troubles. Big hugs to you!

[annekat]

Nikki, you may not technically be as sick as some of us (and I don't mean me at all), but the amount of pain and discomfort you have been going through is way worse than many of us (like me) have to deal with. So I hope the cellcept does something to reverse these problems, and that they get to the bottom of whatever else may be going on besides Wegs.

[Jayne 14]

I hope u get some relief soon , this much pain for this long is beyond horrible
Big big hugs


Sent from my iPad using Tapatalk