The Big "R"

[vdub]

I had my SLC appt today and the doc thinks I might be in remission. I need to have an MRI of the brain and a CT scan of the lungs, but if those two things show no change from the last pictures, then I'll start a one tab a week taper from the mtx. By the end of Sept, I might be off the mtx. Of course, I still have the half dozen pit pills, but I think the mtx is what's causing me to feel so poorly. Lets hope!

[drz]

Sounds like good news we hope!
Congrats!!
Best wishes for a long remission!:hug3:

[pberggren1]

Awesome news vdub!

[NicShaf]

Yay! Hope all your scans and such go well.:)

[Chris G]

That's GREAT news vdub! I hope you get of the darn mtx quickly!

[Sangye]

Wow, awesome news, vdub! I bet you'll feel so much better off the mtx. :thumbsup:

[vdub]

I'm not off of it yet, but I'm sure hoping that the direction it goes.....

Thanks all.....

[Psyborg]

Great news...glad things are going well for you.

[JanW]

Good news vdub. We can be tapering buds. I'm down to 5 (from a high of 7) and going down to 4 next week. My doc is tapering one tab every six to eight weeks, because he wants to see me every time I step down.

[vdub]

I'm on 10 tabs and I will be tapering 1 tab a week. I will start after the last two tests are back and compared with last Feb. Hopefully, start mid-July. Sure hope it works.....

[pberggren1]

I'm on 10 tabs and I will be tapering 1 tab a week. I will start after the last two tests are back and compared with last Feb. Hopefully, start mid-July. Sure hope it works.....

Are you talking about tapering pred? Are the tabs 1mg or 5mg? If they are 1mg then tapering one tab a week is too fast. One tab a month is much better.

[vdub]

Not pred.... I'll be tapering the mtx.... I routinely have 30mg/day of cortef, so I don't think pred is at all likely in my near future....

[Brooke]

great news! Yay for you!

[vdub]

I hope it's good news, but I don't know.

For the past year I have blamed my general "feeling crappy, aches, pains, etc" on the mtx. I have always hoped to get off the mtx, thinking that life would be good again. Yesterday, I saw my VA doctor (annual requirement for us walking warriors) and she said the mtx should not be contributing to the "new norm". I sure hope she's wrong.

She was intriqued with my disease(s). She had only heard of WG when in med school 40 years ago.

[drz]

I hope it's good news, but I don't know.

For the past year I have blamed my general "feeling crappy, aches, pains, etc" on the mtx. I have always hoped to get off the mtx, thinking that life would be good again. Yesterday, I saw my VA doctor (annual requirement for us walking warriors) and she said the mtx should not be contributing to the "new norm". I sure hope she's wrong.

She was intriqued with my disease(s). She had only heard of WG when in med school 40 years ago.

Don't you just love it when they tell all kinds of things that shouldn't be causing your feelings or symptoms but then they have no clue as to what is causing you to feel whatever you are experiencing.

[ArlaMo]

Hoping things go well for you and that it is for sure the big R!!

[vdub]

Ah, Arla.... You are back... You've been absent for a while. How are things going? I have an appt with your favorite rhuemy next week. It might be my last....

[Chris G]

I'm happy for your mtx taper vdub! I believe that the mtx caused me unpleasant symptoms at high doses (25 & 30mg - restless sleep, mental confusion, chills) - especially after about 5 - 6 months on it. I've backed off to 20 mg recently, and feel much better. However, I've also recently finished rtx infusions as well, so I can't say with 100% certainty that it was the mtx vs wg that was making me feel crappy. But I do know that I used to feel worse, the day mtx dose. My fingers are crossed for a speedy improvement of your "crappy feeling & aches & pains"!

[vdub]

Thank you very much, Chris! I'll let everyone know how things go. MRI and CT is scheduled for tomorrow. It will probably take a week or 10 days to get the CD to SLC and decision to be made as to taper. If nothing else, it will be a change. I got the mtx refilled today -- 90 fun-filled tabs....


can't say with 100% certainty
Isn't that the truth? So many drugs, so many interactions, so many other issues..... Really difficult to say what is causing what. I know what's causing a good feeling at the moment, tho..... Laphroaig Quarter Cask Islay Single Malt Scotch Whisky :-)

[ArlaMo]

Ah, Arla.... You are back... You've been absent for a while. How are things going? I have an appt with your favorite rhuemy next week. It might be my last....

Busy, busy, busy! My oldest just graduated from WA-Hi and we had lots of family in town for that. We had a big open house for him - just about wiped me out, but it was worth it.
Feeling pretty good most days and especially with the news from my nephro! The tapering is a pain, literally, but I just hope I can get all the way off the pred!

[vdub]

We are home now.... Maybe after the 4th, we'll get down to 2Walla....

[pberggren1]

We are home now.... Maybe after the 4th, we'll get down to 2Walla....

What's happening on the 4th? LOL Just kidding. :wink1:

[vdub]

Not sure where things are going today. I did feel exceptionally well today (after three bad days). I also received the report from the mri on my brain. I'm not sure what to make of it (I'm not anywhere close to being a doctor), but the report might draw some question as to whether or not I'm in remission.

The result for the MRI on the brain has this sentence “I cannot exclude slight increased prominence of the pituitary infundibulum as compared to previous examinations.” The infundibulum is the stalk that connects the hypothalmus with the anterior pituitary. It’s also where the granulomatoma was. It’s way premature to conclude anything, but I’m guessing they aren’t going to be able to tell for sure that the granulomatoma isn’t growing and they will want to keep me on mtx for a few months more. Just a guess, tho.

We'll see..... Probably be a few days before any conclusions are made....

[Sangye]

That's how I would interpret that line, vdub. I know you're eager to get off the mtx (and rightfully so) but it's much better that they find this before it gets bigger, if indeed it is Wegs still at play.

[vdub]

Yeah, I'm not getting to optimistic. Sure would hate another brain surgery, but at least I wouldn't have to worry about damaging the pituitary.... :-)

[Sangye]

That's a good way to look at it! I hope the docs say it's nothing to be concerned about, or at least that they can get it under control without surgery.

[Chris G]

Damn, I hope this isn't a setback for you. The language ........."I cannot exclude slight increased prominence", sounds very non-commital. I think you have some wiggle room! I'm hoping it's noting at all.

[vdub]

Today I had two doc appts; one with endo and the other with rheumy2. Neither was particularly positive, but nothing specifically negative. Kind of just left a big hole of "what the heck is going on"? Endo wants to increase my levo by 20% and wants to decrease my cortisone by 30%. Rheumy2 wants to decrease my mtx by 20%. All of those adjustments could and probably do have some effect on my "feeling crappy" for the past several months. I'm not sure what I'm going to do. I guess this is the point where I kind of have to call my own shots, however, I'm going to wait for comments from rheumy1 before doing anything. And one other thing.... Endo doesn't like the feel of my thyroid, so she wants an FNA biopsy. Just a bad day. Too much info in and out and I need to temper it with beer..... :-) Which I'm doing.... It will all get better eventually....

[pberggren1]

Sorry to hear this vdub. Is your rheumy #1 your main Wegs doc, like the quarterback so to speak? And the thyroid thing, hmmm, that does not sound good either. What purpose would a biopsy serve? You definitely don't have to call your own shots. This disease is way to complicated to do this on our own. There is no way I could do this without my doc. He is so knowledgable about Wegs and medicine in general that I have full confindence in him.

[Sangye]

I hope today is a better day, vdub.

[drz]

Are they suggesting all the changes at once? Usually my doctors tell me they want to try do one change at a time unless it is an emergency and life critical. They count a switch in meds as one change. It is nice you can still enjoy a beer so your liver function tests must still be OK, at least that is good news. Can you get another opinion on the thyroid?



Today I had two doc appts; one with endo and the other with rheumy2. Neither was particularly positive, but nothing specifically negative. Kind of just left a big hole of "what the heck is going on"? Endo wants to increase my levo by 20% and wants to decrease my cortisone by 30%. Rheumy2 wants to decrease my mtx by 20%. All of those adjustments could and probably do have some effect on my "feeling crappy" for the past several months. I'm not sure what I'm going to do. I guess this is the point where I kind of have to call my own shots, however, I'm going to wait for comments from rheumy1 before doing anything. And one other thing.... Endo doesn't like the feel of my thyroid, so she wants an FNA biopsy. Just a bad day. Too much info in and out and I need to temper it with beer..... :-) Which I'm doing.... It will all get better eventually....

[vdub]

Are they suggesting all the changes at once?
That's where I would inject my opinion. The cortef has the shortest half-life (hours), so it would be the easiest to test. Levo has a half-life of about a week, so it would be next. MTX has a half-life of a month? 6 weeks? So it would be the most difficult to test. But I'm not going to jump to an conclusions until Rheumy1 and PCP weigh-in.

I think my liver is made of titanium. It has always been solid as a rock even tho many of drugs are pro-drugs. Beer is good....

[vdub]

I don’t know the official details yet, but, apparently, I am now in remission and I get to taper off the Methotrexate. I called the doc in SLC this morning. He didn’t call back until this afternoon. Apparently, a letter was sent last week (it will have the details), but I haven’t received it yet. He told me to start reducing the mtx by one tab every week until zero. That means that I’ll take my last mtx on 1Sep. Theoretically, I should start progressively feeling better. Sure hope it works out! But, anyway, a little bit of good news….

[Sangye]

That's awesome, vdub. I think it's much more than a "little bit" of good news. LOL

[vdub]

I kind of take things slowly anymore. Too many disappoints in my life. Soooo, we'll wait and see. Everyone on this board knows about the "false hope" situation. :-)

[JanW]

So funny, vdub, you will probably be finished before I am. My doc is very conservative -- I reduce by one tab every eight weeks. Even my ENT thinks that at the most I should go two tabs every eight weeks. I guess every doc is different and yours at SLC certainly know what they are doing.

[vdub]

Mine is an mtx reduction. I'm guessing that you are reducing pred. I don't do pred because I'm continually taking cortef. I take the cortef because of the pit issue and it will never change.....

[JanW]

Nope, mine is a mtx reduction also. Started at 7 tabs and now down to 4 and have been reducing (and blood testing) since spring. I'm not on pred.

[vdub]

Well, I'll be darned! Dang, two very different reductions. I'll keep you posted on how own mine goes, Jan....

[Chris G]

That's awesome news vwub! I think you'll feel better once you get down to 20mg mtx - at least I hope so. That's where I noticed a difference. I'm still at 20mg mtx and holding - (and hoping I can get back on my PRED taper soon - I've stalled out the last couple weeks).

[vdub]

I'm hoping that's the way it works out. I've never been on 20mg. After dx, I went directly to 15mg and then after the dx was confirmed, I jumped to 25mg and I've been there since the beginning of this year.

My VA doc said something strange that I never challenged. She told me a couple weeks ago that I should feel good on mtx. Hmmmm, don't think so......

[vdub]

I got a new med alert bracelet today for my pan hypo pit situtation. Would you believe this is the 4th one in 14 months? The first 3 were eaten alive -- literally. All were sterling silver. Not sure what is my body that eats silver, but they vansihed pretty fast. The new one is stainless, so maybe it will work. It's heavy as the dickens. The links are about 3/8 inch and the "alert bracelet" part is a little over an eighth inch thick. If this one doesn't make it, then I guess the next step is titanium....

Only 9 tabs of mtx yesterday, but I didn't feel any less crappy today..... For the very first time ever, the mtx made me feel nauseus. I went back to bed with a waste basket next to me. I never threw up, but was prepared. Felt better this afternoon after I doubled my tramadol. I think I'll take an oxy tonight.....

[vdub]

Wow, what a differnce a week makes. Down to to 7 tabs of mtx now. Felt great today. Hope it continues....

[Sangye]

Yay for feeling great, vdub! :thumbsup:

[Chris G]

Wow, what a differnce a week makes. Down to to 7 tabs of mtx now. Felt great today. Hope it continues....

That's awesome vdub! I've had my fingers crossed for you.

Yesterday's mtx did a number on me. It usually doesn't make me feel nauseous, but this morning, my stomach was not happy. Wish I could join you on the mtx taper. Continued success to you!!

[Brooke]

:biggrin1::thumbsup::thumbup::biggrin1:

[ArlaMo]

Hope you continue to feel better and better!!!

[vdub]

Really felt good today, so I decided to move our RV up to our timber propery. The property is at 4760', so is fairly cool (only about 70F today). Even tho the propery is about 14 miles into the mountains and about 10 from the nearest town, we just happen to be on a small hill that allows us to get broadband internet, cell phone, and sat tv. All the comforts of home and total piece and quiet. I think we'll stay there for about a month. We are going to demolish the little tiny trailer you see in the background. We had a good day!

1289

[Psyborg]

That looks like a really nice spot. I wish I lived out West again, I'd love to get up to the mountains. Stuck in flat land Ohio instead :P

[Chris G]

Such beautiful property you have!! And I'd pay good money for 70 degree weather right now.

So happy to hear you're doing well.:biggrin1:

[Sangye]

That's wonderful, vdub. :smile1:

[Chris G]

Hey I might be joining you on the mtx taper afterall, vdub!! I spoke to my doc today and she agrees that because the mtx is causing me so much fatigue, light headedness, mental confusion, etc., that it's hard for me to tell what's wg and what's mtx. She seems to think we should start reducing the mtx so we can get some clarity. I will see her next friday (29th), and we will decide for sure.

It's strange........ as I look back at the early stages, I noted that I didn't have much trouble with the mtx......was it because I was more sick with wg, and didn't notice? Or was it because it hadn't yet built up in my system? Whatever the case......I'll be thrilled to kick that stuff to the curb!

[vdub]

I've been feeling really good for the past few days, but it's still early. I certainly hope you can get off the stuff..... I'll be anxious to see what kind of a taper rate she recommends, too.

[Chris G]

Are you tapering one pill per week?

[vdub]

Yes, I am at 8 now and will take 7 tomorrow for my weekly dose....

[Sangye]

Chris, the longer you're on chemo (even low-dose), the more it builds up in your body. Also, the liver never stops trying to detox it so the more you put in, the harder it has to work. I'm glad your doc is going to remove that variable!

[JanW]

Now that I have gotten down to 10 mg, my rheumy wants me to go really slow (similar to you guys with pred), and stay at this dose for one month more (have already been on it for one month), and then reduce to 7.5 mg after that, and stay on that for another couple of months with a goal to gets to 5 mg by November-ish. Hopefully I can get my saddle nose surgery in December (that's what we are planning for right now). Surgeon won't do it until I'm at 5 mg or lower, and my rheumy is concerned that as I get into the low numbers, we need to be more cautious about possible flares.

[vdub]

Your rheumy is tappering you a lot different than me, Jan. My mtx history was to go immediately on 15mg/wk when I was first dx'ed in May2010. I stayed at that level for about 9 months and they bumped me up to 25mg/wk Feb2011. I decrease by 2.5mg (one tab) each week. I'm now (tomorrow) at 17.5mg. I am really anxious to get off this stuff. I should be at 10mg on 4Aug. I don't have any orders to hold at that level -- I just keep going down until I take the last pill on 1Sep. At the same time I get to drop the folic acid.

I felt so good today that, for a fleeting moment, I thought I should start jogging again. Nah, maybe next year.....

[pberggren1]

Hey vdub:

Do you have a gas or diesel truck to pull that trailer?

[drz]

Do they generally taper Imuran (azathioprine) too?

[pberggren1]

Yes, my doc says that I will be on Imuran for about 18 months and then taper off over about 3 months to nothing if things are going well.

[vdub]

Do you have a gas or diesel truck to pull that trailer?
Dodge 3500 diesel.... Wonderful rig....

[pberggren1]

No doubt. Can't beat a Cummins. What year?

[vdub]

It's a 2005. Believe that was the 2nd year with the common rail and about the last year before the ultra low sulphur stuff. Great engine! I get about 15mpg when towing and get about 20/21 when running around town. Not bad for a 1-ton pickup.

[pberggren1]

I have always liked the Cummins and it is the only one now that does not have the urea in the exhaust. Ford and GM do. I think the Cummins has a better history of reliability.

[vdub]

This week I'm down to 5 tabs (12.5mg) of mtx which should be a pretty light dose. I have felt really well for the past couple weeks, but started to crash a couple days ago. Sleeping 12 or more hours a days, muscle and joint aches, and bad indigestion. I was feeling so good that I was working pretty hard doing difficult manual labor like clearing land, so I can kind of explain the muscle aches. Not sure of the rest, tho. Maybe I'm just getting old enough were I shouldn't be doing that kind of stuff and it takes longer to recover when I do. I plan to do nothing for the next week or so and hope things get a little better. However, in the meantime, I looked up the side-effects of my two primary drugs that I'll be on for the rest of my life..... Maybe feeling "not so good" will just be the way it is.....

Hydrocortisone

•difficulty sleeping
•dizziness or lightheadedness
•headache; increased appetite
•increased sweating
•indigestion; nervousness.
•Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth,
face, lips, or tongue)
•black, tarry stools
•chest pain
•eye pain or increased pressure in the eye
•fever, chills, or sore throat
•joint or bone pain
•mood or mental changes (eg, depression)
•muscle pain or weakness; seizures
•severe or persistent nausea or vomiting; stomach pain or bloating; swelling of feet or legs
•unusual weight gain or loss
•vision changes
•vomiting material that looks like coffee grounds

Levothyroxine

•Feeling hot all the time and increased sweating
•Fever
•An increased appetite, along with weight loss
•Heart palpitations
•A rapid heart rate (tachycardia)
•Heart failure, chest pain, or a heart attack
•Difficult or painful breathing
•Insomnia (see Levothyroxine and Insomnia)
•Emotional changes
•Hair loss (see Levothyroxine and Hair Loss)
•Flushing
•Broken bones or other signs of weakened bones
•Shakiness (tremors) or muscle weakness
•Hyperactivity, nervousness, anxiety, or irritability
•High blood pressure (hypertension)
•Diarrhea, vomiting, or abdominal cramps (stomach cramps)
•Seizures.

[Psyborg]

Be careful pushing yourself with the clearing work, don't want to spawn a flare. I'm sleeping more myself lately, so I'm right with you there...it's like my body wants to catch up for lost sleep when I was on the high doses of Pred :)

[Sangye]

vdub, do you keep a daily log of symptoms and activities? Many times it's the only way I can figure out if the Wegs is active. When it's waking up the symptoms are often vague and I attribute them to this or that. My log reveals when that's happening!

[vdub]

Yes, I started keeping a log about 9 months ago. I slept another 12 hrs last night -- doesn't seem normal. Otherwise, I'm feeling pretty good.

[Sangye]

Do you feel rested during the day? When the Wegs is waking up, I want to sleep day and night.

[vdub]

The past couple days I've been pretty tired most all the time.... I'm going to give it a couple more days before I get too excited, tho.... After that, I'll call the doc.

[Sangye]

That sounds like a good plan.

[Rini]

I hope 4 the best! thanks 4 mentioning the log, i needed a reminder

[vdub]

Big day tomorrow.... MTX down to 4 tabs, cortef down 15% for the start of a taper to a reduction of 50%, and levo increased by 15%. IN THEORY, I should feel better and loose weight. We'll see..... Don't mind me if I'm a little pesimistic about ever "feeling better".....

[Sangye]

I hear ya, vdub. I do hope it works well for you this time.

[gurinbasra]

Friday I went to see my Rhuemy and after showing me all the "F"s on my bloodwork (meaning False, so no positives), he mentioned the R word to me too! I think it's been 4 years since I got back bloodwork that is now all normal - wow, all normal - I can't believe I'm saying normal!!! I'm down to 4mg of the Pred so I'll continue coming off that slowly and apart from some Pred issues a few months back, I do feel pretty normal!! It's been great to have my face back and I'm even wearing some of those nice fitted tops that were too tight before - funny though I do weigh 5lbs more than the last couple of years (& on high dosage of Pred), but I think it's because my body is no longer in "fighting mode".
I will be continuing on Methotrexate & Folic Acid and that's about it, I was told to stop the Alendronate (prescription Calcium), so life is starting to feel somewhat normal! Note, that I'm into 7 months after my second go around with Rituxan, so I'm hoping this will last many, many years as I've never been at this point since I was diagnosed Fall 2007!:rolleyes1:

[RudiK]

Congratulations Gurinbasra, I hope the WG stays in remission and all future blood tests come out false as far as WG is concerned. Rudi K.

[vdub]

Had my blood test today, too, and got the results just a couple hours ago. There are a few things out of range, but only by a bit and generally not a problem.

Sodium was low. I'm probably one of a handful on the forum where the docs have told me to eat more salt. I salt everything. Problem is that both the cortef and levothyroxin makes me heat up. I sweat all the time -- it's very uncomfortable to be so hot all the time. I am in a dry, desert-like climate with a realtive humidity of 20% or less, so I don't always notice the sweating until I rub my hand across my face and feel all the little salt crystals.....

I'm down to 7.5mg of mtx on the next dose. So far, so good and I'm feeling decent.

[Rini]

Friday I went to see my Rhuemy and after showing me all the "F"s on my bloodwork (meaning False, so no positives), he mentioned the R word to me too! I think it's been 4 years since I got back bloodwork that is now all normal - wow, all normal - I can't believe I'm saying normal!!! I'm down to 4mg of the Pred so I'll continue coming off that slowly and apart from some Pred issues a few months back, I do feel pretty normal!! It's been great to have my face back and I'm even wearing some of those nice fitted tops that were too tight before - funny though I do weigh 5lbs more than the last couple of years (& on high dosage of Pred), but I think it's because my body is no longer in "fighting mode".
I will be continuing on Methotrexate & Folic Acid and that's about it, I was told to stop the Alendronate (prescription Calcium), so life is starting to feel somewhat normal! Note, that I'm into 7 months after my second go around with Rituxan, so I'm hoping this will last many, many years as I've never been at this point since I was diagnosed Fall 2007!:rolleyes1:

Congratulations!

[Sangye]

Gurinder, congratulations! What great news. You only gained 5 lbs on high dose pred?!

vdub, you should be using Celtic sea salt. It has proper nutrients and will help you regulate your salt loss better. (I sure miss the dry Arizona climate. I can't stand this east coast humidity.)

[vdub]

As of 3 days ago, I took my last mtx, at least for this go around. I started my taper 10 weeks ago and was reducing by 1 tab per week -- 1Sep was fini day. I'm feeling good, but my blood work is not so great. 7 items (all on the CBC) are out of range either high or low. Two additional items are just barley within range. CRP is good. I think the out of range stuff probably has to do with pituitary issues and not wg, but we'll see.

[Rini]

this is good news right? sounds good...keep us posted!

[vdub]

I've been off the mtx for 6 weeks now. A couple weeks ago I felt a little achey, so the doc put me back on a regimen of tramadol. For the last month I have felt really, really well. Gotta say that I have not felt this consistently good for about 4 years. Things are going well....

[Psyborg]

That's great news Vdub. I hope the improvement continues for you.

[Sangye]

That's great, vdub. I do have to wonder why you're having pain that requires Tramadol if the Wegs is truly under control. Do the docs have an explanation for that?

[Chris G]

Awesome Vdub!

[ScreaminMeanie]

That is such wonderful news, vdub!