Progress

[carriej22]

Hi Folks,

I feel I have made some progress the past few months. I started Imuran in Oct and it really seems to be working well for me, on top of the RTX I had in June. I have a couple more questions/concerns/rantings? for you all who have had this longer than myself.

1) My specialist keeps beating around the bush for a possible maintenance round of Rituxan. Rituxan is a powerful drug; I don't want it if I don't need it. Is this a normal protocol? If I am in full remission should he administer it again?

2) Immune system. What have I got, exactly? My fear of getting sick is pretty extreme. Do I have any sort of immunity to the buggies at all?

3) I need to get some weight off; it's crappy. I'd like to kick about 40 pounds; or more... I'm not fussy. However I think my joints are junked. My arms seem like they are getting strong again; but my legs - especially my knees are not good. My legs are wobbly :( ... I need some low-impact exercise suggestions as I almost died on the treadmill... lol... Yoga? ... And is there anything that might help my knees? They aren't really swollen or anything like that.. They just feel creaky and they are unreliable. If I get down on the floor (to scrub the bath tub, etc etc) I have a hard time getting back up because my knees don't want to work.

4) Do any of you have a permanent or annoying sore throat? Seems like every few days I get one that comes and goes. I also still seem really out of breath sometimes. I cough too; and sometimes its mucus cough. However everything is good on bloodwork - it's just yuck.

5) Pee. Mine is a very unnatural color. I think it glows. IT'S REALLY YELLOW. It started after the Imuran. When I take my weekly urine sample to the lab they are always amazed by it. Obviously they can't find anything wrong with it but does anyone else have alarming yellow pee? lol

6) Prednisone moon face - It's time to go. I have obviously lost the puffed up look but my face is still 50% larger than normal. I have a chin that doesn't belong... lol... I have been under 10mg for quite some time. Anyone help me out here if/when theirs flew the coop?

7) Are any of you in drug-free remission? Obviously this is my goal. Right now; I think 50% of the crappiness I feel is a direct result of all the drugs I am taking. Maybe it's not realistic to want to be drug free but I would love to be!

I think that's it... I really hope I don't get sick again. I don't know if I could do that again so soon. Do 2nd flares come on as fast/as strong as initial flares? Are they harder to contain? Easier? I'm always full of Q's.. lol

[Dirty Don]

1) My specialist keeps beating around the bush for a possible maintenance round of Rituxan. Rituxan is a powerful drug; I don't want it if I don't need it. Is this a normal protocol? If I am in full remission should he administer it again?
-Don't know if it's protocol...but it is a 'next' step if Imuran or mtx aren't getting desired results. Save it if you can & ask doc directly why he's pushing rtx...hate pushers w/o reasons.

2) Immune system. What have I got, exactly? My fear of getting sick is pretty extreme. Do I have any sort of immunity to the buggies at all?
-your AI is down to keep it from needlessly attacking what it 'perceives' as an infection (the Granulamatosis). But once in medical remission w/ good numbers, and tapering pred, you should be able to fight off infections relatively well IF you stay aware &on top of the cold or whatever...theoretically.

3) I need to get some weight off; it's crappy. I'd like to kick about 40 pounds; or more... I'm not fussy. However I think my joints are junked. My arms seem like they are getting strong again; but my legs - especially my knees are not good. My legs are wobbly :( ... I need some low-impact exercise suggestions as I almost died on the treadmill... lol... Yoga? ... And is there anything that might help my knees? They aren't really swollen or anything like that.. They just feel creaky and they are unreliable. If I get down on the floor (to scrub the bath tub, etc etc) I have a hard time getting back up because my knees don't want to work.
-call Dr Oz...he's pushing weight loss pills now! Who knows...they may work. I've found that slowly built up exercise & stretching help a lot. I'm finally back to some cardio, serious stretching, & weights...a year & a half later...and still nowhere as strong as I was...

4) Do any of you have a permanent or annoying sore throat? Seems like every few days I get one that comes and goes. I also still seem really out of breath sometimes. I cough too; and sometimes its mucus cough. However everything is good on bloodwork - it's just yuck.
-no sore throat, but still have dry non-productive cough off & on. I eat lots of Ricola cough drops to keep throat moist...helps.

5) Pee. Mine is a very unnatural color. I think it glows. IT'S REALLY YELLOW. It started after the Imuran. When I take my weekly urine sample to the lab they are always amazed by it. Obviously they can't find anything wrong with it but does anyone else have alarming yellow pee? lol
-drink more water...drugs have a tendency to stain & stink!

6) Prednisone moon face - It's time to go. I have obviously lost the puffed up look but my face is still 50% larger than normal. I have a chin that doesn't belong... lol... I have been under 10mg for quite some time. Anyone help me out here if/when theirs flew the coop?
-mine lasted 6-9 months...now I'm just chubby from all the pred induced chocolate rages...and I'm not even that fond of chocolate!

7) Are any of you in drug-free remission? Obviously this is my goal. Right now; I think 50% of the crappiness I feel is a direct result of all the drugs I am taking. Maybe it's not realistic to want to be drug free but I would love to be!
-duh!

Hang tough, don't let your patience get too loose...patience is a...well, maybe it's the best thing one can do along w/ persistence...

[pberggren1]

Using rtx as maintenance is going into uncharted waters. My doc wants me to have 1 infusion every 4 months now.

[chrisTIn@]

My specialist keeps beating around the bush for a possible maintenance round of Rituxan.

Maybe you can consult another Wegs doc, and get a 'second opinion' on this?
Like you, I don't want to take unnecessary drugs.

I am in drugfree remission, but I have a sore throat regularly.
I 'fight it off' with taking extra care of myself.
That means in my case: getting enough rest, eating good food (sometimes taking a 1000 mg tablet of vitamin C),
cleaning my teeth, gargle with antiseptic mouthwater and so on....

Most of all... I try to avoid germs and virusses by taking the wellknown precautions
(you know... washing hands frequently, avoid touching your mouth with unwashed hands, turn your head when people sneeze or cough around you)

[Alysia]

Hi carrie,
good questions. for some I am also waiting for answers...
When my ears became full of fluid I started walking every day. so, since 2008-9 every morning in every weather I am going out for a walk, not less then 30 minutes a day.
Do you remember the scene from "wizard of oz", when Dorothy put oil to the Tin Man and then he can move ? thats me, Tin Man before walking. in the mornning my joints are rigid. walking to me is like oil to the Tin Man. also in the morninig my nose is full, I cough and while walking it is getting much better. If you keep walking you will lose weight.
as for germs etc. my little child "brings" home some ,from school from time to time and they visit me... not nice at all, but possible. It take more time to get well, and much more antibiyotics then other people.

[annekat]

Wow, long list, so I gave others a crack at it first, but FWIW on the ones I can answer:

2) Hard to say. I figure I have some immune system left because I've only gotten one cold and am able to fight off cold sores and various cuts and bruises are healing, though it does take longer. But everyone is different, and you never know. I do take the kind of precautions mentioned by chrisTin above, and perhaps should take some of them, such as the teeth, a little further.

3) Weight, yeah, a big one. Mine goes up and down within the 140-160 range, and I'm only 5'1'. So I need to work on that just like you do, in the same ways. I have recently quit eating wheat; how long I can stick with it, I don't know.... it is said by some to be effective for losing weight, among other things.... we will see, not enough time has passed. And I tend to compensate by allowing myself to continue with other things like half and half in my coffee or tea, chocolate, cheese, etc. Exercise is my biggest downfall.... now that the weather is getting better, no excuse not to get out and walk, at least. The other big downfall is not enough veggies.

4) Not so much with the sore throat, though it does get dry and scratchy. A lot of mucus cough, though often unproductive, and out of breath from mucus blocking my windpipe. Once it comes up, I'm OK, but that can take quite awhile. Mucus thinners like Mucinex can help, plus drinking lots of water. I currently am off coffee but drink too much caffeinated tea and not enough water. I also use Ricola, and there are throat sprays available, some herbal ones with propolis, and one called Entertainer's Secret which is mainly aloe vera and available online... some people on here besides me have had success with that one.

6) Moon face has gone down for me. I think it started to go around 30mg of pred., maybe 6 months in, not sure of the time frame. I've been at 10mg for awhile and am now temporarily at 20 because of a minor flare. However, for me, it seems like it can creep up unnoticed, perhaps because I'm older and already have the "jowls". But I've been told how much better I look than before, and I'd sure hate to see a picture of me at height of pred face! I hope no one took any.

7) Remission.... well, I thought I might be in a drug induced one, since I was feeling pretty good and my bloods had been stable for awhile. But then I got a cold which may have lead to my current flare, so no, I'm not in any sort of remission at present. But the increase in MTX and pred seems to be working, I'm feeling better, and am hopeful I'll soon get back to how I was. It's only been a month and a half of the extra treatment, and I see the doc next week on the 12th, so will see how much improvement there is in my bloods. In my case, I seem to get used to the drugs pretty fast... sure noticed the increases at first, though, in how I felt. Now I think the crappiness is mostly the disease itself, and I have good and bad days...

In any case, I'm glad to hear you feel you are making progress. That is a very good sign, and I think the improvements will increase exponentially to where you are feeling a lot like your old self again! I sure hope so, Carrie.

[JeanMarie]

Carrie,

Maintenance of Remission in ANCA-Associate Vasculitis :: Article - The Rheumatologist (http://www.the-rheumatologist.org/details/article/2544111/Maintenance_of_Remission_in_ANCA-Associate_Vasculitis.html)

This is a good article by Dr Monarch about maintenance uses of RTX & other drugs. Hope this helps.
Be Well,Jean Marie

[carriej22]

Thanks folks for all the feedback!

My biggest concern is the rituxan. I had 4 infusions in June; and from what I gather it seems as though my doctor wants to avoid a flare (if that's even possible) by having me get more infusions. He wanted to do more in December when I was first treated in June; but he was shocked at how well I did and decided to wait it out and "see what happens".

I have all the patience in the world; and to be honest I would enjoy staying home as a house wife... However financially that is not really possible for me much longer; at all.. lol... I have been working a little but it's not enough. Gotta get back out there and make some dough!

[pberggren1]

Most specialists seem to be thinking of using rtx as maintenance. I told my doc, Let's do it.

[Pete]

Hi Carrie,

Do you have access to a community recreation center or YMCA where they offer water aerobics? It's great exercise and easy on the joints. If you're a non-swimmer, many of the exercises can be done in shallower water - chest deep.

[BookNut]

I am a total newbie and can't answer ANY of your medical questions. I CAN help you out with exercise.

WALKING - ALWAYS good. Before getting sick, I was walking 5 miles 4 -5 times a week. As long as the temperature is highter than 20 degrees and lower than 85 degrees, I am happy and enjoy it. That plus large does of calcium and D improved my osteoporosis significantly - so I am now classified as osteopena. And i never had to take Fosamax or any of those drugs.

YOGA - HIGHLY recommend this. I would caution you to sign up for a GOOD Yoga class with a true Yogi. They are very expensive - but well worth the money. Once you have been through 2 or 3 sessions you will know the basics - especially how to do the poses without injury or strain. They will also give you alternatives to getting into the pose to suit your physical needs. Once you have a good basis, you can look for less expensive alternatives....such as yoga classes at a gym. It is rare to find a person with a PE or PT background who know how to modify poses - or not hurry the whole class too much. DO NOT SIGN UP FOR HOT YOGA. I had a truly excellent teacher a few years ago and she was dead set against it. Her objection was that the heat relaxes your muscles too much and encourages stretching beyond your physical capabilities.

KNEES - I had a hard time with mine a few times in the past. I discovered two things - Glucosomine Chondtroitin which works wonders. The other is a video that you should be able to get from Amazon called "Strong Knees" from a company called Gaiim. It was like a miracle for me.

Best of luck!!

[Alysia]

Thank you ,Jean Marie, for the article. important information.


Carrie,

Maintenance of Remission in ANCA-Associate Vasculitis :: Article - The Rheumatologist (http://www.the-rheumatologist.org/details/article/2544111/Maintenance_of_Remission_in_ANCA-Associate_Vasculitis.html)

This is a good article by Dr Monarch about maintenance uses of RTX & other drugs. Hope this helps.
Be Well,

Jean Marie

[renidrag]

Dr. Monach is my Rheumatologist at Boston Medical Center, a really nice guy. And Carrie, I have been in drug free remission since June 2010 and I have asked if I have an immune system. He doesn't seem to answer yes or no so I have taken for granted that I have some immune system but not all. Lately my inflamation levels are slowly rising so keeping an eye on that. In two weeks, I am having surgery to remove a tumor from my arm. Squamish Cell skin cancer. Usually a pretty non event
but the fear of infection rears its ugly head. Oh and the fatigue I still have, Dr. Monach said they seem to be able to treat the other symptoms but fatigue they can't figure out. I'll take the fatigue over all the other symptoms any day.
Dale

[Tom]

Hi Folks,

I feel I have made some progress the past few months. I started Imuran in Oct and it really seems to be working well for me, on top of the RTX I had in June. I have a couple more questions/concerns/rantings? for you all who have had this longer than myself.

1) My specialist keeps beating around the bush for a possible maintenance round of Rituxan. Rituxan is a powerful drug; I don't want it if I don't need it. Is this a normal protocol? If I am in full remission should he administer it again?

2) Immune system. What have I got, exactly? My fear of getting sick is pretty extreme. Do I have any sort of immunity to the buggies at all?

3) I need to get some weight off; it's crappy. I'd like to kick about 40 pounds; or more... I'm not fussy. However I think my joints are junked. My arms seem like they are getting strong again; but my legs - especially my knees are not good. My legs are wobbly :( ... I need some low-impact exercise suggestions as I almost died on the treadmill... lol... Yoga? ... And is there anything that might help my knees? They aren't really swollen or anything like that.. They just feel creaky and they are unreliable. If I get down on the floor (to scrub the bath tub, etc etc) I have a hard time getting back up because my knees don't want to work.

4) Do any of you have a permanent or annoying sore throat? Seems like every few days I get one that comes and goes. I also still seem really out of breath sometimes. I cough too; and sometimes its mucus cough. However everything is good on bloodwork - it's just yuck.

5) Pee. Mine is a very unnatural color. I think it glows. IT'S REALLY YELLOW. It started after the Imuran. When I take my weekly urine sample to the lab they are always amazed by it. Obviously they can't find anything wrong with it but does anyone else have alarming yellow pee? lol

6) Prednisone moon face - It's time to go. I have obviously lost the puffed up look but my face is still 50% larger than normal. I have a chin that doesn't belong... lol... I have been under 10mg for quite some time. Anyone help me out here if/when theirs flew the coop?

7) Are any of you in drug-free remission? Obviously this is my goal. Right now; I think 50% of the crappiness I feel is a direct result of all the drugs I am taking. Maybe it's not realistic to want to be drug free but I would love to be!

I think that's it... I really hope I don't get sick again. I don't know if I could do that again so soon. Do 2nd flares come on as fast/as strong as initial flares? Are they harder to contain? Easier? I'm always full of Q's.. lolHi Carrie, I did 4 RTX infusions last August BECAUSE I hadnt been feeling well since July. I really didnt get much help from it right away but the Dr says it can take upto 3 months to get the benefits from it and he was right, except I have basically end stage COPD from my wegs. I need to lose the weight but I started this process aboutthe same time you did and went a year on 60 mg of pred they tried to reduce me and the breathing got worse so I went back to 60 and eventually I have gotten down to 10 mg for a week and ended up in the hospital where they put me back to 40 mg. Recently I ahve had breathing problem so the pulmo wanted to raise my o2 from 2 liters to 3 with activity with out raising my pred back to 60 I did one day of the 60 and had to call the dr back and he started a new taper at 60 which I did for one day. I am presently in the hospital for an exasperation. Ive known for some time ans so have the docs that I dont do well on lower doses of pred .So I stuck with the moon face and weight. My prognosis is not good anyway. I am basically end stage COPD. I have no signs of pneumonia but I an occasional cough after breathing treatments with a thick mucus. I do get the sore throats and in fact have a little know in the back of my throat that I am going to have addressed today. My urine is a little off color but with the meds, that may be causing it. I was suosed to see the uroligist today but a snow storm and the hospital prevents that. I didt want scoped today any how. Im not sure we are ever in drug free remission. I get the pred just becaue of the COPD but of coarse for maintenance of the wegs along with cellcept. The best advice is to listen to your body and and insist on answers.

[drz]

Carrie,

Maintenance of Remission in ANCA-Associate Vasculitis :: Article - The Rheumatologist (http://www.the-rheumatologist.org/details/article/2544111/Maintenance_of_Remission_in_ANCA-Associate_Vasculitis.html)

This is a good article by Dr Monarch about maintenance uses of RTX & other drugs. Hope this helps.
Be Well,

Jean Marie

Thanks for link. This is a great summary and I added it to a thread in Med section on RTX.