Methotrexate without Prednisone

[Chris O]

Hi everyone. My 21 year old daughter was just diagnosed with Wegeners.
She has a perforated septum which is what started the trips to the doctor. She has constant joint pain and fatigue plus nose bleeds that come and go. Also they found some small nodules in her lungs (very small per the doc). All her blood work & urine tests came back within normal range so they didn't do any imaging of her kidneys. The Rheumy said she would consider her disease mild and wants to start her on methotrexate. She said she could also add prednisone but said is not doing that right away. Has anyone ever heard of using methotrexate without prednisone? All my reading says that it is the standard go to regimen for non life threatening situations. I trust the doc. She is a vasculitis specialist at Northwestern in Chicago. It took us (9) months just to get an appt. and she was very thorough and seems very knowledgeable. Would love to hear some input on others experience. I am so scared for her and am trying to remain positive. So many people have some scary stories and I know that she is lucky that is seems to be caught early. Just want to make sure we make the best choices for treatment. Thanks all.

[andrew]

Hi and welcome!
It's certainly not the typical regimen but not outside the bounds of possibilites. The doc may be trying to minimise the impact of side effects if she doesn't see an immediate need for the Pred. What's the CRP reading on your daughter's blood test? If it's not stupidly high it may explain the decision. I've been on Methotrexate without Pred but that was some way down the road after initial diagnosis.

We'll see if anyone else can chime in and offer more.

Andrew

[seied]

I'm on Mtx and Prednisone.
My Mtx slows things down so that a little Prednisone can bring the auto-immune attack to a complete halt (remission). I frankly don't think either drug can do the job by itself, and certainly NOT while remission is not achieved.

How much experience does her doctor have treating Weg patients?
This monster of a disease is very hard to tame and you need it to be under control.
You don't want a doctor who is learning how to treat this on your daughter's health.

I'd recommend getting a second opinion from a specialized Weg doctor or switching to one who is.

Ed.

[Chris O]

Thanks for the info. I don't have an exact number but her C reactive protein is less than 0.5mg/dL. All her bloodwork is perfectly normal. Her doctor says that she would consider her disease mild. She is a vasculitis specialist so she has experience with Wegeners. She told Dana that she could do prednisone also but kind of left it up to her. I thought that was unusual but maybe that is because she has normal bloodwork and her tests don't show any serious organ damage? This is all very new to us and confusing. I just want to make sure that my daughter gets the right regimen.

[seied]

Perf septum is not mild Weg. Constant joint pain and nosebleeds, not mild.
These are symptoms of active auto-immune. Remission is urgently needed.
Doctor "kind of left it up to her." Did doctor explain the pro's and con's?

Ed.

[Chris O]

Hi Ed
She did explain the possible side effects but not really pro's and con's. She said that Prednisone would bring down the inflammation quicker until the methotrexate took full effect (guess it takes longer to work) But she said that it came with additional side effects such as bone loss, weight gain, slow healing and others. Just got the diagnosis two days ago. After doing some research we called back with some additional questions and are waiting for a call back. It is the weekend so I don't expect to hear until Monday. I am going to talk to my daughter about doing both meds.

[Chris O]

Me again. Would sure like to hear some additional thoughts and opinions. Her doc seemed knowledgable but now i am having some second thoughts. Has anyone heard of taking a methotrexate only approach when first diagnosed? Thanks again Ed for your info. It was real helpful. Hopefully my daughter will be open to taking both meds. Sounds like that would be a good idea despite the added risks.

[Dirty Don]

I started with pred and MTX, cut out pred after a while. Was on MTX only for about 4 years and achieved remission for nearly 8 yrs. Have relapsed in past year, taking RTX now, have had 3 infusions and am feeling better bit by bit. If you have a good doc, and you seem to, please follow given regimens...they will work, just takes time and patience. Best to you and your daughter.

[me2]

Welcome
I don't know the answer but I do know it is most common to start with prednisone. I think the question might be finding a balance of risk. Is it more dangerous to use the prednisone or risk sustaining more damage from GPA by not using it? Stopping the damage until the methotrexate takes effect is something to think about. Most of the problems from prednisone are from long term use. Like from months and years. Prednisone is given for a wide range of ailments on a short term basis. I myself have been on higher and lower doses of prednisone continually for 20 years now. For much of the time I have been on 9mg daily and as high as 60mg.
Perhaps you could ask your doc by email to explain what her/his thinking is on this issue.

[Alysia]

I know weggies who are on immune suppresed meds without pred, and to be honest, I am jealous at them.

I am on the pred since 2008 and will never be able to quit it. Started on 60mg because of life risking inflamation in the lungs. Today I take 5mg daily and can't take less. When wg is more active I take between 5-30mg.

It is very hard to be on the pred and to reduce it so if the dr. Thinks that your daughter can make it without the pred, I would give it a try.

On the other hand, please consider that mtx might not be powerful enough to stop the wg activity and in this case she might need rtx.

[Chris O]

Thank you sooo much for everyone's advice. Having different perspectives from people who live with this disease is helpful in ways I don't have the words to express. You are a good group of people and I am hoping my daughter will give the forum a try. Right now she is just trying to wrap her head around it all. Thanks again!

[Masha]

I am with Ed on this. I cannot say it better than he has. It is hard for me to imagine a Wegeners specialist would not start her with prednisone. I don’t like the drug, BUT it has been a necessary evil for me.
Masha

[Aneinu]

Welcome and sorry to hear about your daughter. This disease is tricky and there are no absolutes. It is important to have a doctor that you trust. There is, however, nothing wrong with asking questions. It does seem somewhat unusual to do the mtx without the preds, and especially, by leaving it "up to her." Keep us posted with what your doctor responds and God bless.

A

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[drz]

I would think the dosage would be most important. Many people take small dosages of 10 or less for ever because of other chronic conditions and have few problems with such a small dosage. For me it messes with my blood glucose levels even at small dosage of 5-10 mg since i have type one diabetes but I need it as part of my maintenance to help control the GPA residual symptoms and keep them at a minimum. I would love to be off it but I feel better and do better using it. Any thing under 10 mg seems very minimal to me cause when initially diagnosed in 2010 I got 1000 units of Solumedrol just to keep me alive. That would equal 1650units of pred and that did give me me some serious side effects but it also kept me from dying. It took a year to get back down single digits and I have been that way for years like many other people who can't safely get off it.

[gilders]

I won't bore you with all the reasons I hate pred and why I'm strongly against taking it for myself, But I will take it when necessary. If my vasculitis is flaring/relapsing (or my kidney transplant is showing signs of rejection) then it is the fastest acting drug and I will take it.
If there is signs of activity then I would suggest pred. As soon as I achieve remission I always try to come off pred as quickly as possible (but still safely).
Pred really makes my face bloat and I hate it. But I know this will reverse easily and naturally once pred is reduced. Not taking pred may lead to problems that won't easily and naturally return to normal.

[annekat]

Welcome to the forum, Chris! When I was dxed back in 2011 I had about the same symptoms as your daughter. A perforated septum had quickly developed into a saddle nose, I had heavy involvement in ears, nose, and sinus, and rapidly escalating lung involvement. No kidney involvement. Some joint pains but not a lot. I might have been a bit worse off than your daughter, as I had a pretty delayed dx and had been living with symptoms for 2.5 years. My treating doc at the time was barely experienced in WG but knew, or could look up, the typical treatments. I was started on 60mg prednisone and 100mg cyclophosphamide (CTX), a very effective combination of meds. RTX (rituximab) was just becoming approved for WG, and my doc knew about it, and so did I, but I had bad insurance and it didn't seem like an easy or necessary option at the time. I'm OK with the treatment I got, because CTX acts faster than RTX, and I couldn't imagine doing without prednisone, which is fastest acting of all, in terms of symptom relief. I'd had short tapers of it before, when it was thought by my ENT that I was having continuous sinus and ear infections. It always relieved my symptoms quickly, and now, being sicker, I knew that it would again, and it didn't disappoint. As I got better, the pred was tapered over time to much smaller amounts, and I was switched from CTX to methotrexate (MTX), along with it. I had a couple flares in the first few years that were quelled with med adjustments, the earliest with a larger and better dose of MTX, and later with a temporary increase in pred. For a long time I've been at 15mg pred or less, and recently have tapered myself from 7.5mg to 5mg, with no problem, where I had trouble the last time I tried. It may seem strange, and it did to me, that it's actually harder to taper at the lower doses, when you have been on it for months or years. That's because the adrenal glands, which produce cortisol, have become inactive, because prednisone has been doing their job and more, and it is hard to get them to come back on board, and slowing or stopping pred may present withdrawal symptoms, usually the same as your usual WG symptoms. It can even be dangerous. Some people don't ever get below 5mg and it remains to be seen whether I will.

With all that in mind, I wanted to say that I've noticed a trend, when reading about new cases, to not let the use of pred drag out for months, if possible, so as to avoid the complete shutting down of the adrenals. That could be what your daughter's doc has in mind in avoiding pred altogether. But another opinion on that might be a good idea. Though it might not be possible for everyone, I think a lot of us might have liked to get off pred sooner so as to avoid this syndrome and also to have a shorter duration of weight gain, puffy face, bone loss and other pred annoyances. And while it may seem like they both do the same thing, the immunosuppressant, like methotrexate in your daughter's case, suppresses the action of the immune system against the tissues and organs in the body, and prednisone is a very strong anti-inflammatory, used to fight against swelling, allergic reactions, or the inflammation caused by infections or a malfunctioning immune system. Sometimes I still get confused about the differences, and that might be a question for your daughter's doctor.

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[Randy1957]

I wonder what her C-ANCA and PR3-ANCA numbers are? CRP is a little too general and not specific to Wegener’s. I have been on MTX, Bactrim and Folic Acid for nine months now.

Initially, my rheumy started me on a 6 week course of bactrim and prednisone, I didn’t see any significant symptom changes one way or the other. So we abandoned the prednisone and switched to MTX.

My GPA has stayed localized to upper respiratory. I have had no nosebleeds in two years and those weren’t a frequent symptom to begin with. My septum took a hit early on, saddle nose, and a few months after that my ears got funky, all prior to being diagnosed. Tymp tube fixed the hearing. My C ANCA was negative last visit (and has never been more than 1 titer high) PR3 is still elevated but relatively stable over the last 6 months and lower than it was when I was initially diagnosed. My CRP is good also.

Saline rinses seem to help a lot.