Rituximab versus Cyclophosphamide

[mrtmeo]

Hi All,
My mom had a large, one week, pulse dose of cyclophosphamide, waited 12 days and then, had 4 weekly infusions of Rituximab.

She appeared to be in one big flare during and after treatment.
However, her symptoms lasted 1-2 months and then dropped off.
These symptoms appeared to be the more minor ones that bothered her the most over the years.
Recently, her lung function started to improve a little, but her kidneys are not.
Her kidney function was the last symptom she got hit with before getting diagnosed.
Her lung function was the symptom that hit just before the kidneys.

1. Can anyone describe their healing process from their medications?
2. What meds were you on and for how long?
3. Did your symptoms all stop or did they gradually go away and how long did they last?
4. How long did it take to get back to your new normal?
5. How long did it take to reach remission from first diagnosis?
6. Did you become ANCA negative at remission?
7. How long til you had a flare?

And anything else you like to share.

[kmac14]

Don't know if this helps but I was on cyclophosphamide for a good few years - back then in 1987, they were far too over zealous with the immunosuppression and it was not as sophisticated as it is now. I suffered with chest infections even though there was no wegeners activity. I believe that the cyclophosphamide caused a lot of damage to my already damaged lungs. In all this time, I have not had a flare up since that initial bout of very damaging wg.

My lungs were the thing that I initially went into crisis with and only when they took me in on emergency with severe lung pain did they realise that I was also in renal failure. They were going to dialyse then but the treatment - cyclophosphamide and heavy dose prednisolone - worked very well and I responded very quickly. Kidney function lasted at about creatnine 200 (no GFR back then) for ten years before first decline. Then it fell off. It can sit at 200 for a very long time or even for life - or it can drop off. They tried me on long term trimethoprim for the chest infections. There was a lot of talk about that damaging the kidneys so be very careful with anything in the future that could send them over the edge if you see what I mean.

My kidney function went into full failure with that initial crisis but it did come back and did not affect my life for ten years. Sorry I am very new to this forum so don't know if that is of any use or not. Never used the other drug Rituximab.

incidentally, dialysis (immunosuppressant by nature) and also immunosuppression drugs for transplant acts as an immunosuppressant and I find those drugs far more gentle than cyclophosphamide which I detest.

[mrtmeo]

Don't know if this helps but I was on cyclophosphamide for a good few years - back then in 1987, they were far too over zealous with the immunosuppression and it was not as sophisticated as it is now. I suffered with chest infections even though there was no wegeners activity. I believe that the cyclophosphamide caused a lot of damage to my already damaged lungs. In all this time, I have not had a flare up since that initial bout of very damaging wg.

My lungs were the thing that I initially went into crisis with and only when they took me in on emergency with severe lung pain did they realise that I was also in renal failure. They were going to dialyse then but the treatment - cyclophosphamide and heavy dose prednisolone - worked very well and I responded very quickly. Kidney function lasted at about creatnine 200 (no GFR back then) for ten years before first decline. Then it fell off. It can sit at 200 for a very long time or even for life - or it can drop off. They tried me on long term trimethoprim for the chest infections. There was a lot of talk about that damaging the kidneys so be very careful with anything in the future that could send them over the edge if you see what I mean.

My kidney function went into full failure with that initial crisis but it did come back and did not affect my life for ten years. Sorry I am very new to this forum so don't know if that is of any use or not. Never used the other drug Rituximab.

incidentally, dialysis (immunosuppressant by nature) and also immunosuppression drugs for transplant acts as an immunosuppressant and I find those drugs far more gentle than cyclophosphamide which I detest.

Hi Kim,
Yes, Bactrim causes kidney stones and my mom had a reaction to it, so I stopped it.
I keep her vitamin D levels into the optimum range of 60-80 ng/mL to stave off infections and so far, so good.
Your story is an amazing one!

How long did it take for your kidney function to return from the time of treatment?
How long were you on ctx and how long til you reached remission?

[kmac14]

Hi mrmteo, thank you. I am not sure how much I can offer because I am UK so a very different system, drugs, etc it seems on reading some threads. But I am happy to share what I have experienced. I don't think that my story is so amazing but I do think that it is important to tell new people that there is lots and lots of life beyond wegeners diagnosis. Sometimes mind over matter and a will of iron is handy.

You on the other hand 'are' amazing! From what I have read so far, you seem to be really expert on so much and are clearly striving to do everything you can to give your mother the best treatment. Very lucky lady to have you in her corner.

When I had that initial attack of wg and it went un diagnosed for so long and the full renal failure, etc, it was a long time ago but I think that literally a week went past after being on the full recommended at the time treatment I 'think' that it was 150mg and I seem to recall about 75mg pred (loooong time ago). I do remember that the recovery was extremely quick and everything since has not been because of active wegeners but has been about management of the damage that had been done and the damage from the cyclophosphamide. I detest cyclophosphamide but if honest it saved my life. Strange quandary there with the chemotherapy.

[mrtmeo]

Hi mrmteo, thank you. I am not sure how much I can offer because I am UK so a very different system, drugs, etc it seems on reading some threads. But I am happy to share what I have experienced. I don't think that my story is so amazing but I do think that it is important to tell new people that there is lots and lots of life beyond wegeners diagnosis. Sometimes mind over matter and a will of iron is handy.

You on the other hand 'are' amazing! From what I have read so far, you seem to be really expert on so much and are clearly striving to do everything you can to give your mother the best treatment. Very lucky lady to have you in her corner.

When I had that initial attack of wg and it went un diagnosed for so long and the full renal failure, etc, it was a long time ago but I think that literally a week went past after being on the full recommended at the time treatment I 'think' that it was 150mg and I seem to recall about 75mg pred (loooong time ago). I do remember that the recovery was extremely quick and everything since has not been because of active wegeners but has been about management of the damage that had been done and the damage from the cyclophosphamide. I detest cyclophosphamide but if honest it saved my life. Strange quandary there with the chemotherapy.

Hi Kim,
I am in NO way an expert, but in search of what ever will help with this disease.
From everything I have heard from the experts, prednisone does more damage than the cytoxic drugs.
What damage did ctx do?

[kmac14]

Long term, I think that cyclophosphamide damaged my lungs far more that they had been. I agree that prednisolone long term does do damage. I have been on low maintenance dose of pred 5mg forever and really have I think been lucky considering. Bone density not bad at all. Muscles not bad although lots of wastage when in renal decline. Swimming keeps muscles good and I am obsessive about healthy diet. Nothing much to report regarding pred damage. Well not that I know of :O!

[chris.wg]

I was on a high dose of CTX for 2 years my lung function never has become what it use to be. But has been considered normal acceptable levels for 2 years 80% + which is good since I have only been dxed 2 years ago this past april. But never hit 100% lung capacity since. I switched to RTX doing my treatments 4 weeks in a row this past summer. I have been lucky enough to be pred free most of my treatment I did have a initial high dosage 60 mg that I tapered off of and I had a 2nd dose as I switched between ctx and rtx. As for Bactrim I was on it to start. My rheumy at the time took me off when I started reacting to it. My new rheumy wondered why I wasn't on it any more he put me on dapsone instead. He said its not as effective as Bactrim typically but I really should be on something. If I react to this he wants to try Bactrim again since the other antibiotic he though about requires a hood and inhalation. My reaction was a rash and it took me months and being in the sun for a extended period without proper protection that caused the rash. <some times the lawns must be mowed.> Any ways he said if I were to react to dapsone he would try Bactrim. And monitor me if I react right away have to do something else if not watch my sun exposure.


Sorry for the wall of text some times I get a thought and run with it.


Your mom is a lucky woman to have someone caring enough to do this research looking after her.

[mrtmeo]

chris,
I hope you never need the bactrim or dapsone.

[me2]

chris there is a desensitization protocol for Bactrim you might try if you end up needing to try it again.

I went through desensitization many years ago.
Previously my reaction to Bactrim was an itchy rash. The desensitization went off without a hitch for me. I know it has a very high success rate .

The initial doses are very small - especially compared to therapeutic horse dose we get.

The idea is that your body gets used to the drug at small doses and can then tolerate increasingly large doses all the way up to therapeutic.

I did this many years ago and have been able to take Bactrim ever since then with no problem. It does still make me sensitive to the sun so I use SPF goop and a hat. Plus I live in Washington State. I only have to worry about the sun about two weeks a year.

[annekat]

It does still make me sensitive to the sun so I use SPF goop and a hat. Plus I live in Washington State. I only have to worry about the sun about two weeks a year. Sorry to veer off topic, but I want to make sure everyone knows that Kirk was kidding! We have sun for more than 2 weeks a year. They sell plenty of SPF goop in the stores. And hats, too.

[annekat]

I can only say about CTX that it cleared up my lung issues in short order. They were not as severe as some, I guess, and their function has been diminished just a little from the damage that was done before treatment, but I have not had any indication of further damage from the drug, and in general, my lungs are the very last thing I ever think about. I was on CTX for close to a year, which was longer than necessary, I think, as the lungs cleared up way before that, in two or three months, I'd say. It was at a smallish dose for my weight. The literature recommended 125mg. but it was 100 for most of the time, which I wasn't too pleased about; not sure what is better or worse, too little for too long a time or a bigger dose for a shorter time. But it worked, and I moved on to MTX. Never was on RTX. Have been on the standard dose of Bactrim the whole time with no known issues and without a breaking in period. No kidney involvement or problems so far. My biggest issues have been sinuses and ears and I've learned on here it is typical for those to drag on and on, due to the permanent damage done. I can't say I'm in remission, but sometimes I feel like I am, a medicated one. Any kind of stress will shoot that feeling right down, and I've had little, easily controlled flares the last two winters. My first flare-like episode after getting better from the initial treatment was I think about 18 months after dx, but I was not in any sort of real remission at the time; I think it was the result of too low a dose of MTX. The second one was from having tapered to too low a dose of pred, and was aggravated by allergies, in my opinion, though not my doc's. To answer one more question, I have never been tested for ANCA since the initial test which showed a very slightly elevated reading, though I was quite sick.

[mrtmeo]

Hi Anne,
From what I have read in the literature, they keep track of the total amount of ctx accumulated.
I don't know if this means you can only accumulate so much until you can no longer use it anymore or not.
I know they mention the accumulation of it to be more important from what I've read versus time on it.
With Rtx, retreatments can only start at a minimum of 4 months, but I don't think it accumulates like Ctx because the body regenerates bcells around 6-18 months.
I sure hope they can come up with a biologic that stops the sinus attacks.
I am waiting for the results of the PLEXVAS plasma exchange trials to see if they use it to stop the antibodies while the biologic kicks in.

[annekat]

Hi Anne,
From what I have read in the literature, they keep track of the total amount of ctx accumulated.
I don't know if this means you can only accumulate so much until you can no longer use it anymore or not.
I know they mention the accumulation of it to be more important from what I've read versus time on it.
With Rtx, retreatments can only start at a minimum of 4 months, but I don't think it accumulates like Ctx because the body regenerates bcells around 6-18 months.
I sure hope they can come up with a biologic that stops the sinus attacks.
I am waiting for the results of the PLEXVAS plasma exchange trials to see if they use it to stop the antibodies while the biologic kicks in. I think you are right about the total accumulation of CTX. I think a doc could prescribe it anyway, but a reputable one would not, if at all possible. I don't really get sinus attacks. I just have residual damage which can never be reversed and some symptoms that will remain, such as excess mucus production that accumulates in the bronchii and causes coughing. Right now it is not bad at all. My ENT says the damaged tissues in what used to be my sinuses is healed and I should have no more problem with sinus infections because everything is so open and there are no longer sinus pockets in which mucus and infections will accumulate. Others are not so lucky and still have inflamed areas there vulnerable to infection. I don't think there is or will be any biologic specifically targeted toward sinuses and it wouldn't help me anyway since it would not heal permanent damage. The drugs that we have work pretty well to stop disease activity, which would end symptoms not caused by permanent damage. I think I have almost no disease activity right now, due to my doses of MTX and pred. So there is no need to try any different drug.

[chris.wg]

chris,
I hope you never need the bactrim or dapsone.

I am on the dapsone still I have not had issues yet. He just said what the game plan was in case I do.