View Full Version : Rheumy suggests Methotrexate

04-16-2009, 01:53 AM
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!

04-16-2009, 02:14 AM
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.

04-18-2009, 07:59 AM
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.

04-19-2009, 04:14 AM

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

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

04-19-2009, 04:23 AM
Lisa, why do you think it's a drug reaction?

04-19-2009, 04:25 AM
I guess I am guessing. I think it is a drug reaction because what else could be my possibilities????
Lisa CL

04-19-2009, 07:19 AM
Can't help you with the rash but I'm a leftie too (new link with WG - we're all left handed?!)

04-19-2009, 08:55 AM
Thanks Coffee..th next time I am dropping the pred much more slowly...I just took another setback..they put me back on 40mg of pred because my sed rate shot up!

04-19-2009, 11:18 AM
Oh, man, Richard-- so sorry to hear that. I hope they didn't increase the pred on a high sed rate alone (lots of things can cause that).

04-19-2009, 06:59 PM
Sheesh Richard, any other changes in you blood work up? You complained of joint pain before, so I think maybe you just lowered pred too fast. Like me a while back and I ended back on cyto after 2 months. This time I am taking it easy. From 40 to 25 in 5 weeks. My rheumy wanted me to go down by 10 every 3 weeks but I modified it to 5 every 1 1/2 weeks. At 20 ( in 1 week yepee) it will be 5 every 3 weeks and at 10 only 2 every 4 weeks. Hopefuly my body will be adjusting just fine because I will be on azathioprine in July.

04-20-2009, 09:56 AM
Well the joints pains were awful...I will know Wednesday doing some lab work on Monday...Although I am still on Cyto 150mg, I was also on pred 20mg...and as soon as he dropped me to 15..."WILDFIRE"

Anyway...we did not make the swich to cellcept as he wanted to and now he bumped me up to 40mg of pred to deal with the pain in the joints.

Ever since I became romantically involved with my BFF or Wegs...can't seem to break it off---That Life of Weggies!!!!

04-20-2009, 10:11 AM
I was also on pred 20mg...and as soon as he dropped me to 15..."WILDFIRE"
Did you jump 5 mg all at once? It might have been too big a jump. I didn't know it back then--didn't know all you folks with pred experience-- but in retrograde, I can see that my rheumy tapered the pred way too fast. I had the awful joint pains, too.

Ever since I became romantically involved with my BFF or Wegs...can't seem to break it off---That Life of Weggies!!!!
That is hilarious. :D

04-20-2009, 07:09 PM
Ah the fickle Wegs, it just spreads its romance around. It definitely looks like you tapered too quickly. Last time I went down to 5.5 when the joint pain hit, but like you (thru your doc), tried to wean myself too quickly. Just go real slow first by 5 then 2 for at least 3 weeks. good luck

04-22-2009, 08:23 AM
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
04-24-2009, 09:26 AM
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.

04-24-2009, 01:16 PM
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.:(

04-24-2009, 06:06 PM
I saw my rheumy today. I asked him how many mgs our body makes naturally. He said that's an interesting question and thought about 2mgs. I asked what he thinks my long term plan will be and said to get off Prednisolone. At some stage go down to 2 Imuran a day and keep the 3 Bactrim a week - for a long time he thinks. What are other peoples long term plan for medication?
I saw the nose specialist this week too and I asked him about all the polyps I had removed about 5 years ago. He said they were very unusual at the time and had extra tests on them - so he thinks maybe it was Wegs then although I didn't get sick until 1 year ago.
As we are travelling to Dubai and Turkey soon I asked what do I do if I have problems. He said to go up to 20mgs (from 10mgs) for 3 days. Is this what other people do?. Apart from my eye incidents from dropping Pred too fast I have never needed to increase my Pred. Regards Aussie Carol

04-24-2009, 11:52 PM
My prednisone was at 80mg when I left the hospital. I believe after my kidneys started working is when they started reducing it. First by 5's, then once I got to 10mg, it was reduced in 1mg increments every 2 weeks.

04-25-2009, 12:12 AM
Does anyone know how fast the Prednisolone withdrawal reaction is? On the odd occasion that I have forgotten to take my morning pills, I have felt terrible before the end of the day. I'm not sure if this is the lack of Pred or due to one of the other drugs. I've been on 10 mg for around 10 years, more before that.

Cindy M
04-25-2009, 05:35 AM
Hi Carol, you mentioned that you had 2 eye incidents. What were they? I am having alot of trouble with my eyes. Part of the problem is that I have developed a mass beside my right eye, but I also have a problem with double vision, they are very sensitive to light and become very sore and irritated quite fast. When I wake up in the morning it takes about 1 hour for my eyes to adjust and somewhat focus.

04-25-2009, 05:59 AM
I agree...with all of you...slow is better...thanks

04-26-2009, 01:37 PM
Cindy, having double vision is the pred sideffect, red eyes, scleritis etc. The mass however is not. Has it been diagnosed?

04-26-2009, 01:42 PM
Doug, adjusting cytoxan is not done, the dosage is done by patient's weight and then its not lowered but just cut off. So pred is the only one that we can rely on by either taking a lot in relaps or lowering in remission. I'm surprised your doc played with cytoxan dosage.

04-26-2009, 03:10 PM
Here is something I found on the internet. It brings up the possibility of WG being the cause of pseudotumors. See below, in red:

Sclerosing Orbital Pseudotumor

Sclerosing orbital pseudotumor is uncommon. Due to unknown reasons, these tumor behave differently than other types of pseudotumor of the orbit. They grow more slowly, cause less pain, and are characterized by scarring (hardening of the tumor tissue).

Sclerosing orbital pseudotumor is not cancer. But, by local growth it can cause bulging of the eye (proptosis), double vision (diplopia) and loss of vision. Sclerosing orbital pseudotumor can (rarely) extend into the sinuses, brain, and other orbit.

http://www.eyecancer.com/Images/camera.gifBy local growth sclerosing orbital pseudotumors can cause bulging of the eye (proptosis). (http://javascript<b></b>:wImage=window.open('../ViewImage.aspx?sImgSource=2004111715136.gif&sDesc=By+local+growth+sclerosing+orbital+pseudotum ors+can+cause+bulging+of+the+eye+(proptosis).','wI mage','left=300,top=200,screenX=300,screenY=200,wi dth=600,height=600,scrollbars=yes,location=no');wI mage.focus();)

Sclerosing orbital pseudotumor is usually diagnosed by biospy (orbitotomy). Once the diagnosis is confirmed by pathology, systemic testing to rule out specific infectious and inflammatory causes should be performed. For example, an ANCA blood test and a chest x-ray should be performed to rule out Wegener's Granulomatosis. Many of these patients have a past medical history of sinusitis, sinus surgery, or inhalation drug abuse. Therefore, concurrent treatable sinus disease should be addressed.

Come to think of it, I was 70 lbs. heavier at the onset of treatment (fluid build-up in tissues because of renal issues) than I was when the Cytoxan dosage was reduced. Apparently that was the reason for the change in dosage. I'd forgotten about that! I do recall my doctor had some problems getting my dosage worked out because I was right on the edge of needing the next level of dosage, based on weight, but, when he put me on the higher dosage, I reacted poorly to it, so it was reduced to address the problems it caused. If I'm vague here, it's because I don't recall exactly what it was that prompted the lower dosage unless it was anemia or something like that. I had blood issues for a couple years.

04-27-2009, 06:34 PM
Anemia and weight adjustment would do it

05-07-2009, 02:20 PM
Thank goodness for this WG forum...

I explained to my Rheumy how some Weggies with their BFF have responded when their pred's were lowered and the difficulties each experienced. I constantly refer to many of you when I relate to my situation and the joint pain flare up I experienced when I dropped the pred from 20 to 15.

It is so comforting to know that I can make decisions based on my experience and others who face similar crisis.

On a positive note, I guess; is that I am off of Cytoxan and officially making the switch to Cellcept...keeping the pred at 30 and dropping to 20 by months end.

My blood work has been normal or "chemically induced since January" except for that flare I had a month ago when my sed rate went from 20 to 35.

So I am extremely GRATEFUL for this forum..because I am now more informed about how Weggies and their BFF relate to their disease and the meds that helps them get through it.:cool:

05-07-2009, 02:32 PM
I second that. Until I found this group last fall, I had no idea what was going on.

Best of luck with the Cellcept, Richard. It's been great for me, and I hope it works even better for you. It's a huge success to go off cytoxan!!!

05-08-2009, 06:34 AM

Congratulations on the move to CellCept! That is a vote of confidence in your status as a "in remission" or ""may be in remission" candidate. In a few months, with no more symptoms, your rheumatologist may very well call you an "in remission" weggie! Regardless, you've hit a major milestone in your Weggie Experience! A good one at that! It's good you've been able to take the experience of others in this forum and use it to become an involved weggie, one in charge of your treatment! Good for you! That's been the point of our involvement in the forum, those of us farther into the experience, to give you newer weggies a sense of progress in your treatment, to open your eyes to how the treatment progresses. I hope my contributions helped in part. Regardless, I can only repeat: Good for you! You've "graduated" to an important "new normal" by virtual of getting off Cytoxan and reaching a lower level of Prednisone.:)

05-08-2009, 07:33 AM
The move to Cellcept and Pred was quite good for me in the early days, but the real breakthrough came when I changed to Mycophenolate. If you find that you still have problems, I would enquire about changing to it.

05-08-2009, 08:15 AM
I've been looking into Cellcept as I too am coming off of cyclophosphamide in the next few weeks. Google seems to tell me that Cellcept and Mycophenolate Mofetil are one and the same drug - Cellcept being the brand name.
Does anyone know if this is the case and if not, how do they differ?

05-08-2009, 08:22 AM
Jack :confused:
I've been looking into Cellcept as I too am looking at coming off of cyclophosphamide in the next few weeks. Google seems to tell me that Cellcept and Mycophenolate Mofetil are one and the same drug - Cellcept being the brand name.
Does anyone know if this is the case and if not, how do they differ?

I was just looking into that. Mycophenolate sounded familiar- it is the generic for of CellCept (Mycophenolate mofetil is the complete name). My doctor kept on CellCept (new boat to pay for?) but my insurance company didn't fight it and put me on the generic form. I think it was available at the time- surely Mycophenolate wouldn't stick in mind if it didn't! All I know is I had no issues with it, and was on it until December 2007 when my rheumatologists, oral surgeons, and pulmonologist talked with each other about me coming off it because of upcoming oral surgery. I've done fine without it, just taking Bactrim for control of my remission.

05-08-2009, 10:27 AM
There isn't a generic Cellcept yet-- a few months away, I believe. My rheumy said mycophenolate is related to Cellcept (switch a molecule here or there), but not quite the same. Many people do just fine on it, though. I'm on Cellcept, and since it's working well, my doc isn't keen on messing with a good thing.

05-08-2009, 10:57 AM
Doug thanks...it means a lot...I am glad that I was able to make the switch and look forward to a state of remission.

05-08-2009, 12:04 PM
Richard- Maintain a guarded optimism. You know our BFF! It still can throw in some monkey wrenches, but most likely, you are headed for the new normal state of remission. I don't remember how often you were seeing your doctor, but I didn't get the official notice that I was in remission until my doctor felt I could go two months between visits (I go every six months now). I don't know that that's any magic number- two months- but that is how it was with me. During the time I've been in that state, I had one instance where I thought I might be headed into a flare (turned out I wasn't), so I asked to see my doctor at the four month point instead of the six month. No matter what you call the new normal- remission- always be aware of what your body tells you. It's much better to assume the worst and find out you are wrong, of course, than to ignore signs from your body and end uip in the hospital again with a flare. (Pardon me for always being so preachy when I write! I feel like a mother hen sometimes, fussing about everyone and thing as if you couldn't think through things yourself! I'll try to get out of that mode.) :):p;)

05-08-2009, 04:46 PM
I made a mistake with my previous post. :o

The first drug I was on was in fact Cyclosporin (Neoral) and I then switched to Mycophenolate. You are right, it is the same thing as Cellcept.

I used to know all my drugs and doses off by heart, but I tend to let it just wash over me a bit these days. :rolleyes:

05-09-2009, 06:08 AM
I set up a table in Excel that lists drug, dosage, frequency taken because I never could keep it straight otherwise, particularly at the first. The only other thing I might do differently would be to have a place for side effects so I'd have a quick reference. I print the table out and give it to the nurse or doctor when I have appointments, which saves me time, and them, too.

05-09-2009, 10:44 AM

You and I are so much alike! I too print out my "drug" list for each and every doctor appt. Even my dentis and eye doctor appts.
Us midwesterners must all come form the same mold?

05-09-2009, 03:07 PM
A printed out list just makes sense to me. It was easy enough to change a computer file when changes came about, and doctors and nurses appreciated the time savings. I print enough copies so that I never have to try to remember what I'm taking. At one point, during my herpes zoster encounter, I was up to 13 different drugs. Without the list, I would never have maintained the schedules called for. As for the midwestern business, could be! Which reminds me, I have taken my eveninbg meds. yet.

05-10-2009, 09:19 PM
I agree...with WG...you are always on guard but optimistic about the outlook. For now because I made the switch, i will be seeing the Rheumy in two weeks and then every month for three months.