last mtx

[vdub]

Thursday, 4 days from now, will be my last mtx pill. I"ve been tapering for about 6 weeks. I started at 8 pills and immediately dropped to 6, then 5, 4, 3, 2, 1. Of course, the folic acid has been dropped, too. Also, I'm off pred. We'll see what happens.

[Pete]

I would guess that you're close to a good place...

[vdub]

I would guess that you're close to a good place...
From a wegs point of view, probably... From a general health point of view, not so much. Things are still very difficult. Mayo said fibromyalgia, but I have serious doubts about that. I think fibromyalgia is the "goto" disease when they absolutely have no clue.

I was given some ropinirole for restless leg syndrome a couple days ago. Great stuff! I haven't been able to sleep that well in months.

[marta]

Thursday, 4 days from now, will be my last mtx pill. I"ve been tapering for about 6 weeks. I started at 8 pills and immediately dropped to 6, then 5, 4, 3, 2, 1. Of course, the folic acid has been dropped, too. Also, I'm off pred. We'll see what happens.

Wooohoooooo!!!!!
May it last like this for decades to come.

[Alias]

Vdub, glad you are getting at least some relief from some of your symptoms, but it sounds like you still have a lot of discomfort and unresolved problems. I personally think you are correct re fibromyalgia; I think it is certainly a "real" thing, but on the other hand it also sort of a default diagnosis that wraps in a lot of unexplained symptoms. I will be interested to hear how you react to being off of pred and MTX.

Best wishes...

[Jaha]

Vdub,
I'm wishing you all the best for feeling a lot better and get more sleep. I do think that is the by default, diagnosis they give when they can't figure one out. I have been told that most of my crap now, is from the treatments. Keep us informed on how you are doing. Please take care of yourself.

[annekat]

Thursday, 4 days from now, will be my last mtx pill. I"ve been tapering for about 6 weeks. I started at 8 pills and immediately dropped to 6, then 5, 4, 3, 2, 1. Of course, the folic acid has been dropped, too. Also, I'm off pred. We'll see what happens.
That's great, vdub. I had been wondering if MTX needed to be tapered, or if you could just stop, from something I'd read on here to that effect. But my new rheumy says yes, we taper. I haven't started yet. It sounds much less difficult than tapering pred, which I'm currently doing on my own below 10mg., and it's going OK so far. Sorry about your other issues, but congrats on being in remission from Wegs!

Sent from my MotoE2(4G-LTE) using Tapatalk

[Geoff]

Good Luck Mate, I know things have been less than perfect for some time now but you always impress me with your attitude and spirit.

I trust that this current situation signals an upturn in your status and perhaps we will become "neighbours" in the not too distant future!!

P.S Visited Earls Colne airfield in Essex on Monday where they used to fly Flying Fortress bombers in WW2.

[mishb]

I stopped MTX for 3 weeks when I had my sinus surgery. No taper and I felt great.

I hope you are feeling a little better now that you are off the stuff vdub. Hopefully it hasn't started something new, and you are now flying around in the MG and having a ball

[vdub]

And, yet another new (old) development. My local docs have poo-pooed the mayo finding and believe they simply didn't have enough of the complex 7-yr details. So the majority opinion is that, yes, I do have wegs, but it is in remission. My PCP said regardless of not having a positive ANCA, the other evidence simply can't be ignored. So, hooray for remission and double-hooray for no more mtx. My last single, insignificant mtx pill was taken this morning. It's been 7 years of mtx almost to the day -- I started the regimen in Apr2010.

As for the fibromyalgia.... doc says "bunk". I have to agree with that. I had been trained on how to lessen the pain from fibromyalgia and I've done none of that stuff, yet, the pain is generally subsiding. My only remaining pain is in my legs which is being chaulked up to restless leg syndrome. The symptoms and the way it responds to the proper drugs are spot on.

Everyone, my docs and me, agree that my paralyzed diaphragm was simply the luck of the draw and nothing to do with any other ailment I might have. It just happened. Really a bummer, too! You'd be surprised how nice it is to have to lungs when you want to do some heavy lifting or hard work, especially when the heavy lifting is at 4,700' like my cabin is.

I believe a big part of my problem was simply being over-medicated over the course of 7 years. I'm now cutting the drugs (especially pain drugs) back by about a third. My current count is 15 different drugs/day, which is down from a high of 21.

I believe I am getting things in well enough order such that we will be able to go RV'ing this fall. The goal, of course, is to be able to live life the way we want regardless of this crazy disease that afflicts each of us. And, yes Geoff, that includes coming back to England for a long stay.

[vdub]

Things are still on track to reduce the number of drugs I take. I'm now off the opiates and don't have anymore withdrawal symptoms. I'm still having pain, but I'm refusing to go back to hydrocodone unless its the last possible option. The current pain seems to be from neuropathy, but no one knows for sure yet. I'm now on pregabalin, which is kind of a super gabbapentin. I think its working, but the pain is only partially controlled.

[Pete]

I hope you can find effective pain relief. Are you still on target to go RVing this fall?

[vdub]

I hope you can find effective pain relief. Are you still on target to go RVing this fall?
That's my goal. I guess everyone has to have a goal. The reason I wanted off the hydrocodone so badly was because the gov't has made it darned hard to get and that in and of itself would have prevented us from going around the country this winter. At the moment, we are scheduled to head to CA (bay area) in Oct and then on to El Centro (Blue Angles winter training ground, so watch them every afternoon), then Yuma, and east to TX, LA, etc. I hope it works out.

[Jaha]

Sorry I spelled your name wrong, couldn't edit, vdub!

[vdub]

Ah, you deleted the entire message when trying to do the edit, but the messages are sent out immediately to thread subscribers once it is posted, so I still got it.


Wow Vdud,
Congratulations I'm really happy for you and excited that things are going well with reductions in the pain meds. I have been reducing meds over the last seven years and are down from 24 to about 10 Meds a day. I still am on strong pain meds due to Wegs related complications ( Small nevre fiber neuropathy) and really do need to back off to be able to a live more active life. It's been a real roller coaster ride! Keep us updated on your progress, and take care of yourself.

Tell me more about your small nerve neuropathy. How was it dx'ed and what are the symptoms?

I have been having real bad muscle issues in my limbs. The legs were effected first and then it spread to my arms and shoulders. The worst part is the calves of my legs. The muscle seems to slowly tense up and then release with a twitch -- sometimes a rather violent twitch. Both the twitch and the time were it is tensing up to the twitch are pretty painful. No drugs have been able to get rid of it. The arms have also been effected for the last few weeks and last night I noticed I was getting whole body twitching where my entire body would just go into a spasm for a split second.

[Girly3800]

My husband found that Flexeril worked better than gabapentin for his neuropathy. And it has no side effects for him.

[Jaha]

Thanks for saving my post. To find the small fiber neuropathy, they do a punch biopsy, 3 places in your leg, ordered by a neurologist. There are special labs that run the test. I had all the other nerve tests they do.
My symptoms are burning skin,numbness, weakness and electric shock type pain in my fingers,hands, arms, legs,feet,and toes. I do have some facial numbness and jaw pains. It effects several things because it damages the nerves that are sensory.
I too have been dx'd with FM, I probably do have it. It is really hard to say what came first, the chicken or the egg, but it all has mostly been àcaused by Wegs. I am now waiting to have some more stomach tests, that maybe related. Then have to have more cardio test ran. The treatment for it is pain meds and my RTX infusions.
I hope you find some relief soon, take care of yourself.

[vdub]

My husband found that Flexeril worked better than gabapentin for his neuropathy.
I was on gabapentin, but I'm on Lyrica now which is kind of a super gabapentin. I have a doc apt in about an hour and I'm going to ask him to double the Lyrica. That would put me up to the max dose.


The treatment for it is pain meds and my RTX infusions.
Which pain meds are you on? I'm going to ask about the muscle biopsy test during the apt today. He had mentioned getting one a couple weeks ago, but it was more of a passing thought.

[Jaha]

Thanks for saving my post. To find the small fiber neuropathy, they do a punch biopsy, 3 places in your leg, ordered by a neurologist. There are special labs that run the test. I had all the other nerve tests they do.<br>My symptoms are burning skin,numbness, weakness and electric shock type pain in my fingers,hands, arms, legs,feet,and toes. I do have some facial numbness and jaw pains. It effects several things because it damages the nerves that are sensory.<br>I too have been dx'd with FM, I probably do have it. It is really hard to say what came first, the chicken or the egg, but it all has mostly been Ã*caused by Wegs. I am now waiting to have some more stomach tests, that maybe related. Then have to have more cardio test ran. The treatment for it is pain meds and my RTX infusions.&nbsp;<br>I hope you find some relief soon, take care of yourself.<br><br>

[Jaha]

I have tried to take gabapenten and could not, it made me to lethargic. I also was put on Cymbalta, and Topamax for a while had a bad reaction to those also. I am on oxycodone as a break through med and extended release low dose of morphine.
In the last two years I have been dx'd with Wegs in my Brain and the Small Nerve Fiber Neuropathy.I also have nerve damage across the upper abdomen,breast and back from a case of chronic shingles. I am still on 10 mg preds daily and bactrium three times a week. I hope to get the press reduced more after my infusion in July.

[drz]

I have had neuropathy from diabetes for years before the Weg diagnosis but the Wegs made it worse. Nerve conduction tests confirm damage to both my sensory nerves and motor nerves. I initially took some meds for pain but found as the numbness progressed the pain seemed to decrease. i still have occasional twinges of stabbing pain and the other usual symptoms but the numbness in my feet is most bothersome along with loss of balance and trouble walking at times.

I have pain at times from cramps but don't know if this has any relation to the neuropathy since many things can cause cramps.

There are some experimental treatments for neuropathy being researched but no promise of any effective treatment on near horizon. I have been told the best thing I can do is to walk a lot and try to control my blood glucose levels.

[vdub]

I left my PCP's a few hours ago. He is shaking his head and thinking the only thing left is fibromyalgia, which I really dread since there seems to be so very little you can do about it. He thinks that whatever I have can be relieved with Lyrica. He upped my dosage to 75mgx3 today and took me off the ropinirole. I hope to see some results in a week or so. If the pain isn't relieved by my next apt in 2 wks, then he'll up it again to 100mg. However, that's as high as he wants to go. We'll see.


I have been told the best thing I can do is to walk a lot
I have found out by trial-and-error that walking is a good way to relieve the pain, so I make regular trips around the neighborhood.

[Pete]

Fingers and toes crossed hoping you get relief.