Methotrexate and Cyclophosphamide.

[Bloom]

Hi everyone,

I posted recently about a return of my symptoms after 6 sessions of IV Cyclophosphamide, to be honest they hadn't completely gone away. I so wanted it to work though that I probably didn't draw enough attention to it too much.
Less than 4 weeks after the last cyclo I started having significant haemoptysis. I was on 10mgs of pred. Apart from the haemoptysis I was becoming increasingly breathless, it felt as if my lungs were being squeezed 😐.

I was seen in clinic two weeks ago about 7 weeks after the last cyclo. I had a CT scan of my lungs last week. I hadn't had one since I started treatment in December. The CT scan showed some nodules have regressed and some have evolved to cavities and there are new ones, so pretty similar to the previous one! . Overall though, it is still better than before. I have been on 20mgs of prednisolone for two weeks now.

I started methotrexate this week on an increasing dose, to be honest apart from a mild tummy upset the day after and feeling fatigued which I was anyway, I can't say I noticed anything. I have osteoporosis which is worse since I started treatment and can't have treatment until my Vit D levels improve which is complicated because of a parathyroid adenoma.
The consultant has decided that I should have more IV cyclo, three sessions, partly to reduce the steroids earlier, while increasing the methotrexate. I would appreciate any advice on what this is like if anyone has had both treatments.

This isn't a complaint about my treatment, the consultant is great and the other Drs and nurses are also good. I am lucky to be treated at this hospital.

I am also feeling pretty negative about the whole thing at the minute, maybe it's the pred, but I'm really finding it hard to be positive😦. So if anyone wants to give me a verbal kick up the butt, feel free!

Bloom.

[Birdie]

I am also feeling pretty negative about the whole thing at the minute, maybe it's the pred, but I'm really finding it hard to be positive.

So if anyone wants to give me a verbal kick up the butt, feel free!

A verbal kick smacks of effort.
How about a visual instead?

2181

Followed by this:

2182

BTW, prednisolone is what kicked my butt. But they tell me that is not usual. I'm special apparently (actually, it's well documented :) ). I found it even more difficult to reduce prednisolone than regular prednisone but I had far more than usual difficulties reducing prednisone.

Not to make things worse, more of a heads up so you're not even more bummed out later. Take it one moment at a time and find humor in everything. Lame, weak, stupid humor (my specialty). :) :) :)

[Bloom]

Thanks for that Birdie, it helped. I'm being too negative.

Has anyone had both methotrexate and IV cyclophosphamide at the same time? . I have just started methotrexate on an increasing dose, I will take the second dose of 7.5mgs tomorrow and then have IV cyclophosphamide 900mgs two days later. I can see from my last blood test apart from my neutrophils which are raised all the other WBC are low, 0 eosinophils��. I last had IV cyclo in early June.

I am feeling a bit apprehensive, but I know how cyclo affects me, I feel a bit bleeurgh for a few days. Ondansetron helps with the nausea, I've just got this worry that it'll somehow be much worse with the methotrexate. My WBC could have been low for ages this is the first bloods I 've seen. So maybe I' m worrying about nothing, or being a wimp!

[Pete]

Hi Bloom,

Is the plan to transition from ctx to mtx? I was told that the minimum effective dose of mtx is 15 mg/wk. once you're on mtx only, you should feel better. My dosage ranged between 15-20 mg/wk. The only side effect I had was fatigue the day following the dose. For awhile, I was able to reduce the fatigue by halving the dose and take the halfs with breakfast and supper. After I had been on it for three years, the side effect got stronger - was fatigued for 2-3 days. I came off mtx three weeks ago and get my fourth rtx infusion this week. The new plan is to use rtx as needed to sustain remission. I get monthly labs to be sure nothing is going on. Labs are CBC, metabolic panel, sed rate, CRP, and urinalysis.

Hope you can get to less toxic treatments and fewer/no side effects soon.

[Bloom]

Thanks Pete, that's reassuring. The plan is to switch to methotrexate only.

I asked about rituximab, not justified, although I have had 6 IV cyclophosphamide, I could in theory have 22! I have been on treatment for 9 months though and although there is improvement I'm not in remission. But I'm sure others here have waited a lot longer to acheive that. I checked the price of rituximab I can see why the NHS isn't keen to prescribe it.!

Also do you have to have bloods checked every week while you're on methotrexate or do the intervals get longer?

Bloom

[Birdie]

Also do you have to have bloods checked every week while you're on methotrexate or do the intervals get longer?Bloom

If it gets longer then beg to keep it short, the more the merrier. Kinda like checking your gas gauge often while driving will keep you from loosing track and running out.

[Pete]

Also do you have to have bloods checked every week while you're on methotrexate or do the intervals get longer?

Bloom

I had them weekly for about two months when I was put on it. Since then, I'm back to monthly. I might be able to go longer between labs, but this frequency gives me greater peace of mind.

[Dirty Don]

I eventually got to 3 mo. intervals on mtx. Now off it after 4 years.

[annekat]

Thanks for that Birdie, it helped. I'm being too negative.

Has anyone had both methotrexate and IV cyclophosphamide at the same time? . I have just started methotrexate on an increasing dose, I will take the second dose of 7.5mgs tomorrow and then have IV cyclophosphamide 900mgs two days later. I can see from my last blood test apart from my neutrophils which are raised all the other WBC are low, 0 eosinophils��. I last had IV cyclo in early June.

I am feeling a bit apprehensive, but I know how cyclo affects me, I feel a bit bleeurgh for a few days. Ondansetron helps with the nausea, I've just got this worry that it'll somehow be much worse with the methotrexate. My WBC could have been low for ages this is the first bloods I 've seen. So maybe I' m worrying about nothing, or being a wimp! I was on CTX and MTX at the same time, but was taking the CTX oral dosage instead of any infusions. I don't remember but I know at some point the CTX was reduced from 100mg/day to 50mg/day. The doc wanted me to start with 7.5mg MTX per week and I said "that's not enough!" , so he listened to me and started me at 10mg/wk. Once on MTX alone, I stayed on just 10mg/wk for several months, even though I'd read on here that 15mg/wk was the minimum effective dose. Eventually, I flared, and the MTX was raised to 15mg/wk, where it has stayed. I had another more minor flare a year later which was treated with an increase in prednisone, which worked. Now another year later, I haven't had another flare, but am having trouble getting off prednisone. I have to wonder if taking just 2.5mg more of MTX a week would make it easier to get off pred. But my doc would probably say no, because he is really for limiting the dosage of the chemo. He is not a WG specialist. (I don't have one. There aren't any I know of whom I could easily get to.) Anyway, I'd listen to Pete on the minimum effective dose, but might also take into account that you are getting another immunosuppressant at the same time. Don't know what difference that would make on the overall effectiveness of the treatment. Maybe the doc is planning to raise the dose on your MTX when you are on it alone.

As for side effects of MTX, I'd echo what Pete said, except for that mine haven't gotten worse over time, overall. Sometimes I will hardly feel anything. Other times, I may feel a little morose all day. And still other times, I may feel more nausea and yuckiness, but I think this would correlate with not getting enough sleep or being more stressed out than usual. And it is only the one day per week, or possibly more, for some. Others have no problem. And I wouldn't say it is worse that the effects of oral CTX, though I haven't had the infusions. With the oral, I felt quite weird and somewhat nauseous at first, but then I was very sick, which caused some of the negative symptoms. I was in bed most of the time. As I started getting better, I did get used to the CTX and it no longer bothered me.

[Bloom]

Thanks Anne,
The plan for me is to get up to 15mgs of methotrexate in 6 weeks, then maybe go up to 20mgs. I have to increase by 2.5mgs every two weeks. The IV cyclo on top is to enable me to reduce the prednisolone down to 10mgs quickly. Apparently I should only need 2-3 IV cyclo.

The consultant said when I first started IV cyclo that it was better that way because you only feel sick for a few days rather than a lot of the time when you have it every day. It must have been really tough for you to be on both and have to take cyclo every day.

[annekat]

Thanks Anne,
The plan for me is to get up to 15mgs of methotrexate in 6 weeks, then maybe go up to 20mgs. I have to increase by 2.5mgs every two weeks. The IV cyclo on top is to enable me to reduce the prednisolone down to 10mgs quickly. Apparently I should only need 2-3 IV cyclo.

The consultant said when I first started IV cyclo that it was better that way because you only feel sick for a few days rather than a lot of the time when you have it every day. It must have been really tough for you to be on both and have to take cyclo every day. I think when I started on MTX the doc had me cut down to half my CTX dose. And I was only on 10mg. MTX. It worked out OK.... I noticed the MTX but I'm sure I felt nothing from the CTX, as I was thoroughly used to it by then. It does seem MTX takes longer to get used to, and some never really do. Everyone is different. You will likely do OK, and can get some anti-nausea meds such as ondansetron, if it is really bad. Zofran, I think, is the brand name