Pain Free?

[vdub]

Just today, I have seen a couple posts where people are pain-free after rtx.

I have never had rtx, but, in the past 4 years, I haven't been pain-free either. Even with the heavy amount of pain killers I'm on, I'm never pain-free. And, I'm always tired even though I get plenty of sleep.

It makes me question if I'm in remission or not. I often describe my pain as feeling like the first morning after the start of football practice where every muscle and joint in your body hurts -- not excruciating, but terribly uncomfortable and you know it won't go away in a week. And that feeling is with the pain pills. When I wake up in the morning before the pain pills kick in, I really have to struggle to just get dressed.

If I am too active during the day, then I pay for it that evening and the next day. Strolling around a mall for a couple hours is about the most I can handle in a single day. We are taking a little holiday to the UK next month. It will probably take me a month to get through the 5 Imperial War Museums, given a ratio of 1 day touring and 2 days resting. :-) Should I expect more than this, if I had more aggressive treatment, say rtx? Am I missing out on something? My rheumy has never mentioned anything other than mtx.

[Dirty Don]

If your lethargy, pain, etc. are symptoms of WG, then, yes, rtx should be on your wish list. I've managed to stay on mtx to now, but docs continue to 'threaten' me with rtx should my numbers/symptoms get crazy again...just a next step I think.

[Pete]

I was having the roaming joint pains last summer. Also had elevated creatinine and some blood in urine. Turns out that they were symptoms of a flare. My rheumy upped my mtx to 20 mg/wk. Pains subsided, but other symptoms persisted. Had two rtx infusions in 10/13, and after waiting a couple of lab cycles, all is ok.

I think rtx is a great drug. The big issue is cost. Normal retail is US$15-20k. If you have good insurance and get pre-approval, your out-of-pocket cost should be much less. All I had to pay was a $20 co-pay for each treatment.

[windchime]

I had the morning joint/muscle pain starting in 2002. If I took Ibuprofen prior to going to bed I woke up mostly pain free. (I think it was the anti-inflammatory aspect.) If I didn't take it, it was hard to roll out of bed. Now I know that this pain was probably connected to the wegs, but went through years with a diagnosis of fibro. Unless there is another physical reason for your muscle/joint pain I would definitely question whether you are in remission.

The tired even if you get enough sleep may be sleep apnea. That is definitely a symptom. Have you had a sleep study done? If not talk to your pulm doc about getting the study done.

Hope this helps a little.

[renidrag]

Been in remission since 2010 folks and can say I am definitely not pain free. I am however free from the symptomatic WG pain. The roving pain is gone but ankles hurt from time to time. Knee hurts once in a while but nothing like before. Fatigue continues, SOB etcetera. I also have COPD. It is my hope every six months to have bloods done and April they will be done. Doc said last time inflammation level was low but hovering. Will be happy to find out what it is now. Jealous of the England trip, take it slow and lift a beer with our friends over there for me. Two hours through a mall for me is four hours of on my back when home, usually sleeping, unless I push it. If I do I pay for it the next day. Ah the spoon theory.
Dale

[vdub]

It sounds like I might be cheating myself a bit. I'm going to have to ask my rheumy if rtx is anywhere in my future.


Normal retail is US$15-20k.
This, however, is a big concern. I am retired military. Most people think we get free medical. That used to be the case, maybe 30 years ago, but no longer. Cost to me is 25% of actual, so can be a pretty big bite.


If I took Ibuprofen prior to going to bed I woke up mostly pain free.
I did that once. Actually, I took Ibuprofen several times and it was wonderful. However, I mentioned it to my doc and he gave me a cease and desist order. Apparently, Ibuprofen interacts with some of my pituitary drugs in a bad way. All NSAIDS are off-limits for me.


The tired even if you get enough sleep may be sleep apnea.
I've had two sleep studies; one about 5 years ago and another follow-up just a year ago. The first one was before I was dx'ed with wegs. At the time, they didn't know why I was having a hard time breathing, so they labeled it as sleep apnea and got me a cpap. Now we know the cause of not being able to sleep. The cpap is wonderful. When I put it on, I fall to sleep straight away.

I'm actually glad to know that I'm not the only one with pain. I didn't think I was. But now I have some possible relief. RTX will be a definite question for my rheumy. I will call him up and give him advance warning. I have an appt in early May. Thanks for all the replies. I hope the question also helped some others.

[windchime]

I love my CPAP but I've now graduated to a BIPAP which I will get next Thursday. I'm hoping it will help with some of the fatigue. Good luck to you on your quest for RTX. Keep us posted.

[vdub]

Actually, I think mine is a bipap, too, but I just got used to calling it a cpap...

I called my rheumy about the rtx this morning (left a message) and he does want to talk to me about it at my next appt, which is in early May. We'll see.....

[Alysia]

Hi vdub.
I am sorry for your pains :crying: I think that it might be because of WG, and that another treatment might help. so rtx is an option.
can pred help you ? for me, it does.
I must say that in the month of getting the rtx I had pains all over my body. I though it was because of it. later it had gone. but still there are days when everything is aching. thanks God not too many days like that.
I hope that this way or another you will feel better and enjoy your trip. :hug2:

[Lilly]

Hi vdub, I am just the same way! I wondered if there were any other weggies like me. I am in "remission", still taking 5mg prednisone, and Bactrim. I still have face pain from my 23 yrs of sinus desinigration, but take pain meds for that. But the main thing that interested me about what you said, is how you can push yourself and use up too many spoons, and be completely exhausted for 2 days. I have even had a long fun day with my sister, and got home, sat on the couch, and fell asleep for 6 hours, woke up....went to bed and slept 12 more hours without even waking up! And I was still tired! I work a small part time job, 4 days a wk, 5 hrs a day checking insurance. A sit down job. And Friday I was tired, just from getting up early for 4 days, and driving home, I dozed off at a long red light! Then I nodded off while driving twice and ran off the rd a little! My Mother is an Angel, If she knows I have been busy during the day, working a little in the yard or whatever, she will drive me to wherever I need to go. Its actually nice, we spend time togather, and I love her company. I feel kindof like a baby having to have someone driving me around, but its better than having a car wreck. I question my remission too......I just figure even in remission, wegeners is always going to wreak havoc on us anyway! But I try very much to use my spoons wisely, but its a tough balancing act, I feel lazy when I nap to keep going. But that's what I have to do. I have had 4 Rituxan Infusions, but since my bloodwork, and other tests told my Dr. I was in remission, he does not think I need one unless my tests show I am flaring, so I have not had one in 8 months. There was no difference for me in the way I felt, my tiredness, etc. The Rituxan itself mad me a bit "not myself", my Mom said. And I didn't sleep well after for about a month. That's about when I felt like I was back to my self again. Well, that's my experience with our similar issues, and my rituxan treatment. Sorry its so long. Just wanted to be thourough. I hope your Holiday goes well. 2 hour naps inbetween doing things helps me. Rituxan effects everyone differently, so you may want to mention it to your Rheumy. At least see what he says. Take care! Ill be following your progress, and pray the best for you! :thumbsup:

[Lilly]

Hey Pete, I looked at my bill from my Ritux. Infusion.......It was $28,000. !!!! I didn't have to pay anything, because of my insurance, but to say I was surprised at the price is an UNDERSTATEMENT!!!!!

[vdub]

I feel lazy when I nap to keep going
:-) I just made the comment to my wife a few minutes ago that I can't believe I wasted an entire morning sleeping. In my working years I was a ball of fire -- I worked hard, enjoyed it, and didn't expect any plus up in salary because of it. I just loved hard work and now I feel sooooo guilty. Not to mention not being able to do all those things I had "saved up" for retirement. Oh well, it is what it is....

[MikeG-2012]

:-) I just made the comment to my wife a few minutes ago that I can't believe I wasted an entire morning sleeping. In my working years I was a ball of fire -- I worked hard, enjoyed it, and didn't expect any plus up in salary because of it. I just loved hard work and now I feel sooooo guilty. Not to mention not being able to do all those things I had "saved up" for retirement. Oh well, it is what it is....

I'm experiencing the same thing. It is my workweek though that is wearing me out and making me crash all weekend. I'm still really struggling with getting my strength back after this last flare-up. This respiratory virus, that I picked up in January and still haven't been able to shake off , isn't helping matters any either. I feel your pain Vdub!

[drz]

Just today, I have seen a couple posts where people are pain-free after rtx.

I have never had rtx, but, in the past 4 years, I haven't been pain-free either. Even with the heavy amount of pain killers I'm on, I'm never pain-free. And, I'm always tired even though I get plenty of sleep.

It makes me question if I'm in remission or not. I often describe my pain as feeling like the first morning after the start of football practice where every muscle and joint in your body hurts -- not excruciating, but terribly uncomfortable and you know it won't go away in a week. And that feeling is with the pain pills. When I wake up in the morning before the pain pills kick in, I really have to struggle to just get dressed.

If I am too active during the day, then I pay for it that evening and the next day. Strolling around a mall for a couple hours is about the most I can handle in a single day. We are taking a little holiday to the UK next month. It will probably take me a month to get through the 5 Imperial War Museums, given a ratio of 1 day touring and 2 days resting. :-) Should I expect more than this, if I had more aggressive treatment, say rtx? Am I missing out on something? My rheumy has never mentioned anything other than mtx.

Pain is very exhausting and can contribute greatly to feeling fatigue. I am mostly pain free and considered in good remission but have similar limits in activity. I can handle a few hours of some light activity or mental activity most days with a nap or two. If I push it into a longer day, I will usually need a day or two of rest to recuperate. If I tried to go till I crashed I am afraid it might be a real bad outcome for me so I try hard to avoid it. My fatigue is attributed to my medical problems like kidney damage, lung damage, diabetes and resultant fluctuations in blood glucose levels, serous neuropathy and loss of balance that makes walking much more difficult and the many meds I take for Wegs and above problems.

Some times it is frustrating and hard to feel good about limiting my activity but I remind myself I will do even less fun stuff if back in hospital or nursing home again. I think I also enjoy the shorter activities more when I know they won't last for a long time. I try to pick the one or two I want to do the most and quit before I get exhausted.

I used to go on tours where they often had a 12 plus hour day of activity, hikes of 3-5 miles, or a several hour bike ride and other similar activities but know I can never do these again given my current medical condition.

[vdub]

I used to go on tours where they often had a 12 plus hour day of activity, hikes of 3-5 miles, or a several hour bike ride and other similar activities but know I can never do these again given my current medical condition.
I remember those days, too.... But they aren't coming back are they? Bummer.....

[Alysia]

I remember those days, too.... But they aren't coming back are they? Bummer.....
who knows ? don't give up....