SEVERE Nausea on Cytoxan

[txrepub4God]

Did anyone else experience severe nausea on Cytoxan? Was just definitively diagnosed with WG in March 2015, after fighting with my docs for 2 years that it was WG & that they needed to treat me before I died. Very long story, but I found new specialists in Dallas & got diagnosed by blood tests, biopsy, & tests that proved damage to many organ systems. I have kidney, lung, heart, stomach, sinus, hearing, sight, & nerve involvement now. I have been on 100 mg daily of Cytoxan, 20 mg (now) of prednisone & Bactrim. I'm also on Rifampin for latent TB. The nausea is horrendous, worse than I've ever had. Also, did anyone have hair loss on Cytoxan? Thanks!

[Pete]

Hi Tex,

I was on 150 mg of cytoxan for about 16 months. Fortunately, I didn't have nausea side effects. My doc told me to take it on an empty stomach with plenty of water. He also told me to stay well hydrated and urinate whenever I felt the urge so the metabolates didn't stay in my bladder too long (bladder cancer can be a side effect). I apparently have a cast-iron stomach because I got through that regimen ok.

You may want to add folic acid to your diet to combat the hair loss. My rheumy put me on 1 mg/day when I started methotrexate. My hair got a little coarser, but I've kept it.

Talk to your doc about side effects. You may either be put on a different immunosuppressant or an anti-nausea med.

Good luck and better health!

[drz]

What are the symptoms of Weg damage to the stomach? Could nausea be one of them? Is nausea a possible side effect of other meds you are taking? Ask your pharmacist and doctor for their best guess about the nausea?

[gilders]

20 years ago I was on Cytoxan, but only for a short period as I could not tolerate it. They tried to feed me by a tube going up my nose and down my throat, but I kept vomiting it back up and would choke on the tube. I did have severe hair loss even though I didn't take it for long.
With stomach involvement and other meds you're on, the nausea might not be down to CTX.

[annekat]

For me, the nausea with CTX was very slight and I got used to it within a couple of weeks. I was on the same amount you are on. It is a heavy hitter and usually works well to stop the progress of the disease and allow symptoms to clear up. I don't know, though, with all those organs that you have involvement in, whether you are getting a high enough dose of either that or prednisone.... not clear how long you've been under treatment, but guessing March 2015? There is a formula for dosage of CTX by weight... according to it, I should have been on 125mg, but I did well on 100mg. Sorry, don't have the formula at hand. Not that you'd want to take more if you are having problems with it. Maybe you need another opinion or a consult by your doc with top experts at this site: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) , or check this one, too, for additional docs in your area as recommended by patients: Vasculitis Journey of Hope (http://www.vasculitispan.org/) . Rituxan is another heavy hitting med that may be recommended for you instead of CTX, though the process of getting it approved and administered is much more involved.

As for hair loss, yes, I had it, but not to the point of losing it all or having anyone really notice. I've heard of taking folic acid with MTX for hair loss and other issues involved with the med, but not in connection with hair loss from CTX. I don't know that it wouldn't work, and it wouldn't hurt. Folic acid is cheap and readily available OTC. Best of luck, and keep us posted.

[txrepub4God]

What are the symptoms of Weg damage to the stomach? Could nausea be one of them? Is nausea a possible side effect of other meds you are taking? Ask your pharmacist and doctor for their best guess about the nausea?

For me, the stomach involvement started with a year-long bout with gastroparesis, which caused me to vomit all day about 5-7 days a week. It was absolutely miserable. That sort of calmed down, but I do still have constant nausea, and with having to take Rifampin for latent TB and now the Cytoxan for WG, the nausea has ramped up to the worst I've ever experienced. I would much rather just barf and get it over with than to have my stomach roll 24 hours a day. So far, no anti-nausea meds really touch it. Guess roiling nausea is better than no treatment for WG and dying. My fight was so long to get my WG diagnosed and treated that I'm surprised it didn't kill me before they believed me and diagnosed it. :)

[txrepub4God]

For me, the nausea with CTX was very slight and I got used to it within a couple of weeks. I was on the same amount you are on. It is a heavy hitter and usually works well to stop the progress of the disease and allow symptoms to clear up. I don't know, though, with all those organs that you have involvement in, whether you are getting a high enough dose of either that or prednisone.... not clear how long you've been under treatment, but guessing March 2015? There is a formula for dosage of CTX by weight... according to it, I should have been on 125mg, but I did well on 100mg. Sorry, don't have the formula at hand. Not that you'd want to take more if you are having problems with it. Maybe you need another opinion or a consult by your doc with top experts at this site: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) , or check this one, too, for additional docs in your area as recommended by patients: Vasculitis Journey of Hope (http://www.vasculitispan.org/) . Rituxan is another heavy hitting med that may be recommended for you instead of CTX, though the process of getting it approved and administered is much more involved.

As for hair loss, yes, I had it, but not to the point of losing it all or having anyone really notice. I've heard of taking folic acid with MTX for hair loss and other issues involved with the med, but not in connection with hair loss from CTX. I don't know that it wouldn't work, and it wouldn't hurt. Folic acid is cheap and readily available OTC. Best of luck, and keep us posted.

Anne, I initially asked my kidney specialist to test me for Churg Strauss in March 2013. I had been researching my own symptoms for a few months, and everything pointed to vasculitis. I thought it was Churg Strauss, but it turned out to be WG. However, a kidney biopsy I had a couple of months later didn't support the WG, so my kidney doctor, who had started me on Cytoxan and prednisone, took me off both drugs, even though I cried and BEGGED him not to. I have had a different kidney disease for 19 years now called IgA Nephropathy. Anyhoo, for the next year I couldn't afford any medical testing because I didn't have health insurance, so not until I got married in March 2014 did I start looking for new specialists that would test me for the WG and believe me. You wouldn't believe how many specialists refused to treat me because "you have too much health stuff going on" - like they didn't want to deal with someone that had as complicated a health history as I have. They would just rather let me go on and die than take over my care. I was finally sent to UT Southwestern Hospital in Dallas in January of this year, and God blessed me with a lung doctor that believed I had WG and had me tested and biopsied for it. He also sent me to several kinds of specialists over there, who all agreed with the WG diagnosis. By this time, 2 years after I figured it out myself, I had heart, lung, stomach, nerve, kidney, hearing, and sight involvement. You can believe I am TICKED OFF about that. There were times I was hospitalized for it in those 2 years - probably 6 separate times. It is by the grace of God that I am still here, because I have been ready to give up during those 2 years.

I had a sural nerve biopsy in my right ankle in March 2015, which gave them the biopsy-backed diagnosis of WG (along with the positive C-ANCA and PR3). Again, I had 4 rheumatologists tell my lung doctor that they wouldn't treat my "difficult" case - I honestly cannot believe this is going on in the US (thanks Obamacare). My case is made worse by the fact I was diagnosed with latent TB in September 2014, so they had to get me started on Rifampin for that in April 2015, so that I could then start treatment for the WG in June 2015. We finally found a rheumy at UT Southwestern that would treat me, and I have only been on my meds for 2-1/2-weeks at this point.

I also have degenerative disc disease in my low back from L4-S1, and am supposed to have lumbar fusion surgery to fix it. However, my rheumy will not medically clear me for the surgery until my treatment for WG is done, which she says will be at least a year. All this going on, and I just got my 3rd denial by Social Security for disability! LOL I swear, trying to get disability in Texas is a joke - if I was in any other state I would have been approved a long time ago.

Thanks for all the info....it means alot to find this board!

Teri

[Pete]

Here's a link to some natural/homeopathic nausea remedies: 4 Natural Remedies for Nausea | Everyday Health (http://www.everydayhealth.com/digestive-health/four-natural-remedies-for-nausea.aspx)

Consult with your doc to be sure nothing is contraindicated for you.

[Jaha]

I have had a lot of stomach issues before and after Wegs dx. It is what ultimately lead to the dx, Doc ordered CT of abdomen and they found cavitated masses in my lower left lung. It still took 7 months to comfirm, with a lung biopsy, then a lung resection, high fevers, weakness and many other things happening. I was dx'd 5yrs ago this coming Aug. and have had nausea off and on with every tx I have taken. I have been dx'd with gastroparesis, but just had an endoscopy done in March and they found that I have 20-50 gastric funda polyps in my stomach. The really bizzare thing is that they say they were caused from the anti-acid meds that I have been given to take over the years. I am sorry that you are going thru this and I wish you all the best in finding out the reason for it. One thing that I used to do years ago for my stomach, but have not talked with the Doc about it, is to take Aleo Vera juice 2-3 times a day and it would heal up for a while. Please though check anything you try with your specialist and all the best to you.

[annekat]

Thanks for all the info....it means alot to find this board!

Teri Teri, I'm so glad you took the opportunity to vent and go into detail about all your difficulties. That is what we are here for! I, too, am glad you found us. It means a lot to know you are not alone with this strange disease that some doctors will not even treat. It's especially deplorable when rheumatologists won't do it, since they are the ones who are supposed to be prepared for it, but the sad fact is, many of them aren't, and they know it. That's why we are always harping about getting in touch with recognized specialists, etc. But it sounds like you have finally found a good one, who will treat you, and knows how. 2 1/2 weeks isn't very long to have been on CTX, so you could easily still be experiencing some nausea from that, possibly in combination with other meds you are taking, and the gastroparesis. I did get over the nausea after 2-3 weeks, or maybe didn't notice it as much since I felt so bad I was in bed all the time, anyway. But it did all get better with time. Just make sure to drink PLENTY of water while on CTX, as Pete mentioned above.... this is really important. Wish I could help with the nausea, as it really does sound a lot worse than what I experienced. Just know that you are still early in treatment and CTX, for many, seems to be the fastest med available at stopping WG in its tracks. And I might add, if no one has said it, you might find it helpful to split the dose between AM and PM; that's what I did.

I'm sorry about your diffculties getting SS Disability. It does seem to be true that some states are easier than others, and I think age may have a lot to do with it, too. I'm in the state of Washington, and had no trouble getting it, without having to appeal. But I was 58 at the time, getting close to "retirement age" anyway. Now I'm coming up on 63, and in my generation, am already eligible for regular Social Security, though I technically wouldn't be eligible for Medicare until age 65 if I wasn't already on Disability. It is theoretically possible that my case could come up for review, but I doubt it will, considering my age. I'm still on WG meds, at this point methotrexate, pred, and Bactrim, and doing quite well, might even be said to be in remission, though no one has said it. But I'm afraid if I were to quit the drugs, it would come right back. I hope you can get to this point in a year, as your rheumy indicated, and that you'll be eligible for your back surgery even if still on maintenance meds. I hope the best for you and that you'll continue to come on the forum with any questions, stories, or just to vent.

[Green Grass & High Tides]

Ive had gut involvement for 16 years with chronic nausea from wegs.

Cytoxan infusions are best foe me, pill wouldn't be my choice. The cytoxan, nausea is a different beast. Kytril and Ativan were suggested at the cancer center. They explained a complimentary mechanism when combined. But i take zofran and found through studies that alprazolam increases the effectiveness of zofran for nausea. So, i take the two together after infusions. I also go up on prednisone from 30mg to 60 mg which helps. Studies show dexamethasone has some value here too but i stick with pred and use synergistic hpa axis suppression to counteract the Paradoxical Effects of glucocorticoids on the immune system.

Confused about yet? Me too... but this has worked best for me.

Other things i use for weg gut based nausea is ginger tea and nutrition.

Hydroxyzine is something i tried last night instead of promethazine since it is milder and helps counteract the Paradoxical Effect of glucocorticoids on autoimmune disorders. Not sure how it will pan out yet... but its one that doesnt seem to trigger my wegs. I look for studies that show a synergistic HPA Axis suppression with all my meds. This has become a rule for me si ce the number one trigger of my wegs is stressors- internal or external. All stressors are processed through tbe HPA Axis which glucocorticoids like pred suppress. choosing meds that either dont mess w hpa or have synergistic suppression is required for me as of today.... subject to change...

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[peabodygal7]

What specialist does one go to that has Wegener's?



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[txrepub4God]

What specialist does one go to that has Wegener's?



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The best person to treat Wegener's is a rheumatologist that specializes in vasculitis or vasculitic disorders.