Update after starting treatment

[makabe]

It's been a while since I updated, but after tapering my pred, all of my "original" WG symptoms started to come back, including daily fevers. My rheumatologist decided to go ahead and start treatment. His theory (after consulting with Dr. Merkel from Boston, now at UPenn) is that I have either "mild" WG (a term he said they don't really like) or that I'm on the cusp of fully developing WG. While there was always speculation it *could* be something else, every single specialist I've seen feels most comfortable calling it WG and treating it as such.

I started taking 20 mg. of MTX weekly, with daily pred and folic acid. At my six week check-up, I was feeling somewhat better, but still not great. It's been about three more weeks now and I'm really starting to feel like something is making a difference. I don't have a fever any more, my joint pain is MUCH MUCH better, my dry eyes and mouth are significantly better and I haven't had a sinus or ear infection in nearly two months (HUGE progress for me!) My ENT scoped me last Friday and was very impressed with the difference. He said he generally has a hard time maneuvering the scope b/c of inflammation and it was easy and not even that uncomfortable for me (and I don't get numbed for it...)

I was on vacation with my husband and two little boys last week. We were busy every single day and I was able to keep up with everyone! I still feel pretty icky the day I take the MTX, but I'm guessing that is to be expected.

I still have an appointment to see Dr Merkel myself, but not until the end of October. Hopefully I'll be in even better shape by then!

Any idea how long I might need to stay on MTX/pred? Strangely enough, I have not yet asked this question.

[Pete]

Hi Karen,

I just started MTX in mid-July. Dr. Villa Forte at Cleveland Clinic told me that it would be about three months for it to take full effect. She expects to keep me on it for 12 - 18 months. I was dx in 1/11 and was on CTX until the end of June 2012. My current wegs drugs/dosages are MTX 15 mg/wk, pred 10 mg/day, bactrim 1 each on M-W-F, and folic acid 1 mg/day. I also take caltrate + D (500 mg of D) twice a day. At the moment, I am experiencing no adverse effects from any of my meds. I take MTX with my evening meal on Wednesdays just in case I get drowsy, but so far, I haven't noticed anything out of the ordinary.

My pulmonologist in Columbus tried to switch me to immuran in January, but I experienced either a wegs flare, pneumonia, or a bad reaction to this drug. I went back on CTX after about 10 days and had to increase my pred dosage as well. I started tapering off pred once I was feeling well. Started at 40 mg/day and have been holding at 10 mg/day since early June. Dr. Villa Forte and I want to have only one medication variable in play at a time. When I see her at the end of September, I'll ask about resuming the taper off pred.

My progress seems to be a lot like yours. I feel well, but I do tire more easily than I used to. Now, if I could lose about 15 pounds (mostly belly fat due to pred), I'd be alot happier.

Pete
dx 1/11

[JanW]

I've been on mtx (no pred) since 3/10 and was in drug-induced remission since perhaps the end of that year. I am down to 5 mg and even my rheumy who I saw yesterday says that I'm at a "candy dish dose" (which is apparently what oncologists tell rheumys they are giving AI patients in terms of immunosuppressants), and neither of us can say at this point whether it prevents a flare. He believes according to literature he has read and his personal experience (he has WG patients that he has never treated medically, only followed their bloodwork), that WG can have very long periods of remission whether with or without medication (which may be part of the reason that the old descriptions of the disease essentially said that only 50% of patients would have a second flare once they got into remission post-dx).

It's important to note that I have never had any mtx side effects except to feel markedly better when it started to take affect (highest dose 17.5 mg). The reason we started to reduce was that I had my saddle nose repaired and my ENT wanted no more than 5 mg mtx and no pred to do surgery. So we've kind of stuck here and I'm comfortable with it since it doesn't affect my daily living and the doc says that long term effects should be minimal. The important part is that I see him every six week for a checkup as well as complete bloods, so it's an ongoing discussion.