Overreacting rheumy? Possible switch from MTX to Cyclophosphamide

[malin]

Hi,

I've got a question about switching medications.
Right now I am 25 mg Methotrexate / Week and 7 mg Prednisolone / Day but at my last Rheumy appointment she was talking about possibly swapping me from the Methotrexate to Cyclophosphamide because she said that although my ANCA and most other tests are fine, my ESR and CRP were a little high.
The ESR and CRP came down and were low while I was on a higher dose of Pred earlier this spring but once I dropped the dose the ESR and CRP popped back up to higher levels, around 20-60 I think. (My rheumy doesn't always write my results down for me so I can't remember exactly)

Anyway, my question is, Is it not a bit severe to switch from MTX to Cyclophosphamide instead of trying to up the Pred dose again or to give me something like Bactrim?

I'm a bit reluctant to start treatment with Cyclophosphamide since I've never been treated with it before (always been on MTX). I am especially worried about the side effects of infertility and early menopause because I'm only 22 years old, I've got a fiance and in the not so distant future we were going to look into having a baby.
Now I feel like all my dreams are about to be shattered yet again.

Another thing I was wondering about was if anyone knows about any help one might get from the government if I do have to start with Cyclophosphamide and I would end up infertile? Is there any help towards possible adoption etc? (I live in the UK but it would be interesting to hear about what it is like in other countries as well)

Thank you!

[Sangye]

Malin, you really need to get a Wegs specialist to help make such a decision. Sometimes it's the lesser evil to bump up the pred temporarily, but sometimes the Wegs is too active and that won't be enough to control it.

If they do need to use a stronger med, why aren't they considering rtx, especially given your concerns about fertility?

You didn't mention any signs/symptoms. How are you feeling?

[malin]

Thank Sangye,

I'm looking into finding a Weg. specialist although atm I'm on holiday so when I get back to the UK in late September I'm going to as either my GP or my Rheumy to refer me to Addenbroke or possible Birmingham to see if I can see a Weg. specialist there.

Regarding how I'm feeling, it goes up and down but over all I feel ok. Obviously the Pred has its side effect but apart from that I only feel a bit run down/tired and achy all over my body. And usually only later in the day, in the mornings I'm fine. However I have also been working full time days these past 2-3 months and it's taking its toll but since I'm working with deadlines I find it hard to ask work if I can slow down :/ It's an evil circle!

[Sangye]

Glad you're going to get a Wegs doc to help. Run down and achy all over... could definitely be Wegs brewing. Sometimes if it's just being kicked up by overexertion you can get it back under control by resolving the stress. If it were me, I'd ask work to slow down. It could save you from going on ctx, etc....

[staystronglivelong]

Hi Malin

I'm by no means an expert but it seems odd to me that they want to put you on cyclophosphamide. How long have you been being treated? My husband started on cyclophosphamide intravenously for 6 months. He has 2 more treatments to have with it and when I quizzed his specialist about what drug he will go onto afterwards he said methotrexate.

You must put your foot down and make sure you get the drug thats best for you. Don't let them ruin your fertility if at all possible. I agree with Sangye. What about rituxan? I know its used on some people as I asked the specialist because I'd been reading about it and it seems it may turn out to be quite a good alternative to cyclophosphamide.

You should write down anything you want to ask so you're ready at your nxt appt. Don't just let them get on with it. Your fertility is too precious to loose if it can be avoided. My hubby and I have a daughter, we are lucky. Although the option was there to freeze sperm (which he did) before he started the treatment.

Wishing you all the best and hoping you can get some positive answers next time you see someone. I think in the uk you can get 1 free cycle at ivf provided neither of you has a child. But I don't know if they would harvest eggs for free. Thats if you can still get a free go at ivf - they might have changed that.

Where in the uk are you Malin?

[Jack]

I agree with the others that a switch to ctx seems to be quite drastic, but we are not in possession of all the facts so you must be guided by your specialist. If you don't have faith in the one you have, you have every right to switch to the hospital of your choice. I go to the Queen Elizabeth in Birmingham and trust them all the way.

Due to the effects of ctx, I have one adopted daughter and one by AI. The adoption was not a problem, perhaps because the people involved had no idea what the disease was and I played it down. And then we had several rounds of AI treatment, all fully funded by the NHS due to the circumstances.

[elephant]

I too agree with the others and here is why: When my Wegeners was really active ( lung nodule, almost deaf, left red eye, swollen/painful joints, tired, stuffy nose, could hardly breath out of, facial pain, teeth hurt...) I was put on 60mg of prednisone, 2000 mg of cellcept, 150 mg of cyclosporine ( other immunosuppresant) and Bactrim every other day. It worked for me so far. The funny thing is that I wanted to be on cytoxan..but the doctors said no for many reasons.

[Sangye]

Elephant, I think the added cyclosporine can make a big difference.

[elephant]

Me too, I think the Rheumy's still think so. They don't want me off it.

[JanW]

I agree with everyone here, malin, but as we've all said, we don't have all the facts. The fact that the inflammatory numbers are going up is potentially troubling, but rtx seems to be the new thing to switch to if there are fertility concerns.