Rheumy suggests Methotrexate

[Erika]

Hi everyone - I haven't posted in a while and just had my rheumy appointment yesterday. To quickly recap my situation, I have had two surgeries to remove lung nodules in the past ten years following episodes of coughing up blood, with no actual diagnosis until January 2009, but no medication regimen. After the appointment in January, my doc said that we would see what my blood tests did over the next three months and go from there. Results yesterday showed that my ANCA level is up from 127 to 275. All my other blood work was fine. The only symptoms I am currently experiencing are fatigue, headaches and occasional swelling in my joints. Both my doc and the specialist he is working with suggest I start Methotrexate to keep my ANCA level from going up anymore and to keep more severe symptoms at bay. So any input on this suggestion? What could I expect from the Methotrexate? Thanks!

[Sangye]

Hi Erika,
I'm on Cellcept, but no pred. My ANCA has risen non-stop in the nearly 3 yrs since I began treatment (first cytoxan and pred, then mtx and pred). It's now thru the roof.

For me, the ANCA doesn't correlate, because it's gone higher as I've improved. My bloodwork is staying pretty stable, though I also have pretty bad fatigue, joint pain, and other stuff. For others, it's a good predictor.

Recently my JHU rheumy said he wouldn't treat a high ANCA unless the other labwork was off, too. He felt many of our symptoms go up and down without amounting to much (ie, no flare), and he isn't a fan of increasing the drugs unless absolutely necessary. He's one of the VF docs (Phil Seo), and he's done a lot of research specifically on the use of ANCA.

It might be good to ask your doc to consult with a VF specialist. From what you wrote, it just doesn't sound like your Wegs is on the rise.

[RCOSSIO]

My number "chemically induced" has been relatively stable...but as soon as my Rheumy dropped my pred from 20 to 15...all joints pains have "Come Alive"

I know that he wanted to drop the pred but boy what an experience. Haven't played golf in over a month.

Anyway with WG being my new BFF it seems that I probaly could have made the switch to cellcept and then keep my pred at 20 and reduce it by 1mg...not 5mg (25% drop) now this is the second time I tried dropping it from 20 to 15 and every time without fail...joint pains....and mind you there not NICE!!!!

The last I visited the Rheumy he did not want to drop pre by 1mg and insisted on 5mg...well guess what the third time around no more...cause it seems i take 3 steps back when he drops it so much.

[coffeelover]

Richard,

My rhuemy is dropping me by 2 and 1/2 instead of 5. Maybe you could try that route?

Erika,
I am currently on MXT with no problems, so hopefully you experience some relief and no side affect from it either.
Best of Luck! We are all so different, it seems.

I have a question for anyone out there. I have a rash under my left arm only. Rash, acne, whatever and I am certain it is a reaction of sorts to one of my meds? Have any of you experienced this and what med is it causing it?
PS-I am left handed. ( only left handed people are in their right mind, ya know?)
Lisa coffeelover

[Sangye]

Lisa, why do you think it's a drug reaction?

[coffeelover]

I guess I am guessing. I think it is a drug reaction because what else could be my possibilities????
Lisa CL

[Carol]

I've had 2 eye incidents when my rheumy told me to drop by 5mgs. NOW I make my own decision and if he says drop it by 5 then in a month drop it another 5 I write out a schedule to drop it by only 1mg a week but keep to his ultimate schedule. So I have 5mg tabs as well as 1mg tabs. I'm now down to 10mgs. I think I have developed a fear of going off it completely - it will be interesting to see if I can. I'm not an addictive sort of personality but I guess the fear of it all happening again is very much still with me 12 months after the onset. Regards Carol Australia

[Cindy M]

I agree with dropping the preds too fast. I started at 60 mg per day, after two weeks went down to 50 mg per day and then to 40 mg per day. When I went down to 40 mg, my symptons sky rocketed plus I developed more problems. I went back up to 50 mg per day and then went down to 45 mg per day. On May 13th I will be going down to 40 mg again, so we will see what happens.

[Doug]

Richard (and others who've had the same treatment)- Have you asked your doctor why he makes the big drops in Prednisone instead of adjusting your Cytoxan (or whichever drug you are on)? I know they don't want to take you off it too fast, nor leave you on it too long, but each time they have to deal with a setback, they assure you will be on nasty drugs longer than ideal. I may be off on the Cytoxan (I'm just going by how the pulmonologist and rheumatologist handled my case), but the closer I got to the end, the smaller the drops in Prednisone as a percentage of total dose. I've been trying to find my signout papers from Denver, the one that gave the Prednisone regime I was on. I will attach it or copy it once I find it, because I think you all will be surprised how I was handled. No adjustments were made from the schedule (made at the end of January 2004, completed by the end of April 2005). It just seems to me that several of you are suffering needlessly. That's just me.