Methotrexate

[Brooke]

Hello~
My doctor called from Mayo clinic in Rochester, MN to go over my ct results. She said my lungs had improved by looking at the ct scans but said my sinuses have not. She asked how I was feeling overall and I said better than before but definately not where I should be. I said I still have the coughing at night and the wheezing in my neck/chest area.
She said she would be more concerned about the methotrexate not working if my lungs had not improved, but since they have, she said to give the methotrexate a little more time.
She doesn't know if I have activie Wegener's in my sinuses or if it is scaring from before and now I am prone to sinus infections.
She wants me to come back to Mayo in a month or two and have another bronchoscopy and more blood work.
She says if the methotrexate does not work for my sinuses she will put me on cycophosmate (sp?). Or, she said Rituxiab (sp?). I am nervous about the cycophosmate.

[elephant]

Brooke, hope it the methotrexate works for you. Glad you Lungs are improving. I am suprised that they would not try you on Imuran or Cellcept. My sinus was really screwed up and the cellcept and cyclosporine worked for me. But everyone is different and so is their case.

[Brooke]

thanks elephant, what is cellcept and cyclosporine? Is it like methotrexate but a diff drug?

[DEE]

hi brooke i was taking methotrexate for five months i have sinus involvemrnt and found to have kidney involvement nov 09 when i had a flare up wg consult put me on cyclophosphamide and high dose of preds again which im hoping might be rejusted next week sinuses seem alittle better still got dripping nose!! and now a cough which hope to sort out with consult on thurs as everyone keeps telling me its early days decided need to go back to my origunal thinking one day at a time instead of feeling sorry for myself
wishing you all the best in getting sorted out DEEx

[elephant]

Cyclosporine lowers the immune system and used with kidney transplant and they use it on some WG patients but it is not that strong to knock the WG out. Cellcept is also used for Kidney transplant and WG disease. I think the two together helped it my WG from not getting worse. Still have minor sinus involvement. Cytoxan would be a last resort or mabey I would use the new drug RTX that Sangye used.

[Jack]

The long term dangers of Cytoxan side effects are directly proportional to the amount you take in total so a single period of perhaps 4 months does not carry much risk and can be very effective at subduing Wegener's. Higher risk catagories are people like myself who have had numerous treatments to halt repeat flares.

[Brooke]

Thank you very much for the responses. So Jack, if I am understanding you correctly, you do not think taking cycloporine would be too harmful to take if it were just for a short while? Is that the same thing as cytoxan?

[Jack]

Cyclosporin is a drug that can be "safely" used over long periods to maintain remission.

Cytoxan (cyclophosphamide) is in another league. It is a very powerful drug used in the early stages of Wegener's and is usually effective at bringing the symptoms under control. However, this comes at the cost of the potential for long term side effects due to it being carcinogenic. These effects are proportional to the total dose taken, so a single round of treatment does not carry too much risk. Repeated use increases the risk until it reaches the level where you need to consider using alternatives.

[pberggren1]

My Rheumy told me that Cyclosporine is harder on the kidneys than Cylophosphamide.

[Jack]

That does not sound right. It is one of the main drugs used to control rejection in kidney transplants. I took it for many years.
Cyclophosphamide is the one that comes in a red and yellow striped bay with WARNING written on it!

[elephant]

Phil that is true. Cyclosporine given in higher dose's can cause kidney failure. That is why it's not the choice drug to use to keep Wegener's in remission. When I was diagnosed July 2008, they upped my cyclosporine and I started with the prednisone 60 mg. This did not control my Wegeners, I went down hill and they started me on Imuran Feb 2009 and then went down hill after two weeks. So the drugs I take now are Cellcept, cyclosporine, bactrim( every other day) and Prednisone. The only thing that the medicines right now are not controlling is the sinuses. That's were all the confusion is at. At the moment the kidney doctor and I are going to try to eliminate the cyclosporine but slowly.

[elephant]

My kidney transplant was in 1989 and I have been on cyclosporine for 21 years. In the beginning they start you on higher dose's of cyclosporine and then decrease it to a safer dosage.

[Brooke]

I wonder what works the best or if it is trial and error with all the medications. Anybody know what seems to work "best" for sinus involvement? The methotrexate does not seem to be helping my sinuses very much. I would like to try something else before having to take cyclophosmade if I can. Or, has anybody got into remission being on just the methotrexate and steroids? This is frustrating.

[Jack]

My only experience has been with cyclophosphamide which pretty well cure my sinus involvement (which was extreme!) in few weeks.

[Sangye]

Brooke, unfortunately there's no real way to know which drug will control which symptoms. Basically they first put you on the least toxic drug that can control your worst problem. In your case the mtx is helping your lungs (top priority) but not your sinuses. At some point they might have to switch drugs or change the mtx/ pred dose if possible to get the sinuses under control.

It's incredibly frustrating. I'm sorry you're going through it.

[Jack]

Sangye is right. There are no rules that say which medication works best for you, everyone reacts differently and no two cases of Wegener's seem to be the same. This is where the experience of your specialist becomes invaluable.

[Brooke]

Thanks again.
Jack - what were your symptoms with the sinus involvement?

[Jack]

Very first symptoms were sinus pain. Lots of it! Enough to prevent me from sleeping.

My GP diagnosed perennial rhinitus and prescribed a spray to clear it. This did not work.

After three more days without sleep my nose was totally blocked with crusting and I paid (no insurance and I felt that I could not wait) for an immediate appointment with an ENT consultant. He diagnosed a sinus infection and gave me antibiotics.

Things continued to get worse, my nose was bleeding massively every day and new symptoms began to appear - joint pain, skin and eye problems. My entire nasal passage would block with long plugs of congealed blood and mucus. This was attributed to septicemia and I went through a series of sinus washouts which seemed to make things worse. It was then decided that I needed an operation called a Caldwell Luc to remove my sinus linings! This took a while to recover from, but I did seem to be a bit better for nearly a year after this. Still lots of big nose bleeds and crusting, but with the help of saline irrigation I was getting by and my other symptoms had gone away.

Then, over a few days, all the old symptoms came back with a vengeance and I was immediately admitted to hospital under the same ENT consultant. They did some more messing around with my nose and sinuses, but these were now becoming the least of my problems and I continued to deteriorate. The ENT team were at a loss as to what was going wrong. I reached a stage where I could hardly walk anymore and I was in constant pain. It was at this time that a new doctor came onto the ward and suggested Wegener's. They then made some tests and found that I was not only in renal failure, but my other organs were beginning to shut down too. I was then transferred to another hospital under the care of a rheumatology professor who managed to sort the mess out.

That turned into a bit of a saga didn't it? ;)

[elephant]

Thanks Jack for sharing. My symptoms back in 2007 were kinda like yours but less severe and the WG was very sneaky quiet doing it's damage and then it attacks "with a vengeance!" I was on cyclosporine 150 mg a day when this was going on. I had four maxillary sinus surgerie 2007-2009. One was the Cadwell Luc and the other where they take bone out of the maxillary and opened up the left maxillary.
Jack when did you notice the ear disfunction ( eustacain tube )?

[Jack]

That has only been quite recently. Even though I had problems with tear ducts and sinus, my hearing problems and tinitus have only been around for about the last five years.

[elephant]

Jack that is interesting. My ears were bothering me the same time as the sinuses. What does your Rheumy think? Do they think its because of the medicine? This disease is something else? Trickery I tell you, plane Trickery!!!

[Jack]

I'm pretty sure it is the Wegener's that is responsible. The ENT I consulted was uninterested and just wanted to fit grommets because a recent MRI had shown my tubes to be full of liquid. I don't think that would be a permanent solution and in any case, I failed the pre-op examination (too many things wrong with me). It all gets much worse if I try reducing my steroids and I suspect that it might improve with a higher dose, but I don't want to do that.
It seems to be a common symptom on the Forum which leads me to believe that it is Wegener's related rather than a drug side effect.

[Brooke]

Thanks Jack. Anyone else with sinus involvement? What are your symptoms?
I do not have any sinus pain or anything, nor I have I ever. I can tell my nose is a little sore and dry because I do my sinus rinse everyday and get "chunks" out but they are usually not bloody unless I have been coughing a lot, which I am guessing that puts pressure on my sinuses and causes it to bleed. But my ENT doc says it is very inflamed and lots of scaring in my nose.

[JanW]

My sinuses are always inflammed and swollen, but other than blowing on fairly large chunk out of the nostril per day, no real symptoms (certainly nothing I would have gone to the doctor for). About a year ago, I went to the ENT for what I thought were recurrent infections and a lot of pain. A routine CT noted "marked thickening of the mucuousal passages" and said that Wegener's should be explored. And here I am.

I've only just started to mtx, no steroids, so can't speak to what impact if any that will have. I also really don't know whether the pain was a symptom of the imminent collaspe of the bridge of my nose (which happened over the summer) or not.

[Brooke]

Thanks Jan, I too have the thickening of mucuousal passages. You sound similar to me, I don't have pain with my sinuses that I would need to go to the doctor for. I have always gone because of a cough or wheezing or my voice being gone. I also developed saddle nose deformity. That happend right after I had sinus surgery, so didn't know if it was from sinus surgery or from wegeners. I think from wegeners because my ent said he has never had a patient develope saddle nose after sinus surgery.

[JanW]

The ENT told me that Wegs, sarcadoisis or cocaine abuse were the basic causes of saddle nose. It is really one of those things that doesn't happen for no reason. All of my tissue death was on the "outside" actually...I don't have anything strange inside my nose, and no holes.

My cough and wheezing are directly due to my SS and are constant. I assume you've had your throat CTed or been brochioscoped to check for problems there (my problems were misdiagnosed as asthma and allergies for five years!)? I have scarring throughout the subglottis (pretty severe actually), down to the second tracheal ring. The chest CT didn't pick this up, but the throat CT did. Both my chest and throat CT report said specifically that Wegener's should be explored, and unfortunately, my ex-pulmy didn't take this where she should have because there was no definitive lung involvement and therefore nothing for her to biospy. When I asked her whether I should see a rheumotologist, she said that she didn't think that was necessary. Luckily (or unlucklily depending on your point of view) my nose collasped six months later, making the fact that I had "something" wrong as plain as the nose on my face. A persistent foot problem and ankle swelling led to blood tests that then led to a rheumotological workup. I think that because I'm black, everyone has a hard time believing I have this disease...I'm not sure my ENT believes it (he was voting for sarc, but that's out of the running because there would be lung involvement). Doesn't matter to him though, he's treating it as though it is, since that is the diagnosis from the rheumo.

[DEE]

hi brooke
ive had problems with sinuses for the pass eighteen months runny nose crusting on both sides and until recently nose bleeds on a daiy basis
first ent tried fitting splints to stop crusting !! next ent knew there was more to it and did biospy thats when suspected wg from the results he got later confermed by wg consult when i had vascul rash on leg and joint swelling everywhere have had constant headaches and spent seven weeks in the first year in hospital with sinus pain and cellulitus on left side of face . used methor and pred for the earlier treatment which helped until i got kidney involvement apparentally i had to be different as wg consult said usally happens the other way round but try to keep smiling thinking of investing in a tissue factory as i use several boxes a week !!!! how your meds work soon DEE x

[Jack]

i had to be different as wg consult said usally happens the other way round
I don't think the word "usually" should be used when it comes to Wegener's. There seems to be very little pattern to the symptoms. My own symptoms came on in the same order as yours.

[DEE]

stand corrected Jack words dont come easy at this time of day(drugs and tired) could not think of another word his words not mine not only similar systems and whimps in common jack ( kidney biosey !!!!) DEE x

[Brooke]

Jan,
Yes I have had 2 bronchoscopies. I too have SS. I will be going back to Mayo clinic the end of March.

[Jack]

Sorry if my post came over as a correction DEE, it was meant more as a passing comment. It is so hard to get the inflection right on the internet. ;)

[JanW]

Do you have to have yours repaired, Brooke, or are you just watching and waiting at this point?

[elephant]

That would be great to have audio " our voices" on....so when you read the reply you hear our tone and possibly munching on a sandwich, muffins or something crunchy...or mabey not.

[Brooke]

haha good one elephant!
Yes Jan, I had my saddle nose repaired about 10 months ago. My ent borrowed cartilage from behind my right ear to place in my nose. He did a great job.

[DEE]

its ok jack maybe i didnt put it across right as u know this is all new to me and always value your advise having bad day maybe will go to bed now tomorrow another day sorry DEE x

[elephant]

Hey Dee, your fine. I just have a very sarcastic sense of humor. ;)

[JanW]

I'm very frustrated because I've been taken off of mtx before I've even reached the therapeutic dose. My rheumy says that my liver enzyme level are elevated, and, since I'm having surgery in just a few weeks, I'm to discontinue its use for a chance for the pre-surg bloodwork to come back normal (and obviously for my liver to come back to normal). He also got the results of my bone scan which show very thin bones for a woman of my age (44) and ethnicity (African-American), which he thinks is due to all of the steroids that I was taking for asthma (which theorectically could have helped some with the Wegs -- or not, we'll never know). So I'm going to move on to another drug after surgery -- he assures me that there are lots of options -- but that we started with this because it's generally the best tolerated. It's so frustrating not to be able to treat the disease once you know that you have it!

[elephant]

Jan, sorry to hear about your liver enzymes being up. I take Cellcept and tolerate it well. Some have taken it have stomach issues, then they get switched to a coated one. There is Imuran too. I did not tolerate that and had a drug reaction to that one. I have osteopenia and stopped taking boniva five months ago. I just don't want to take another drug. I might have to start soon though. The prednisone caused the osteopenia. We are the same age. I know it sucks! Keep us posted.

[JanW]

Are you in remission, elephant? (sorry, bad memory). I haven't even started treating yet!!!

[elephant]

No, My Wg specialist said, " almost getting there," but we are still keeping a close eye on my kidney with dip sticks that she gave me. I am on four WG medicines ( Cellcept, cyclosporine, prednisone and Bactrim DS).. I talked with the kidney doctor to try to decrease my cyclosporine...so we are doing it slowly. I felt like I was on too much medicine's for supressing my immune system. I see my local rheumy thursday and see my WG specialist in June.
I'm telling you this WG thing is a full time job!
Jan you will do fine, and you have great support.

[Sangye]

Jan, there are other options that are as well-tolerated as mtx. Like Elephant said, Cellcept is a good one. It doesn't mess with the liver like mtx. I imagine that your doc would try imuran next, though. They have to do a blood test to make sure you can take it.

Wegs is frustrating. Nothing straightforward about it. I hope your liver enzymes come back to normal quickly and things ease up for you.

[jola57]

Jan, my liver enzymes have gone up when I started taking mtx, so my rheumy lowered it from 15 to 10mg and while it stopped them from going up they are staying elevated. I am seeing him in March so I will probably discuss what steps to take next - continue mtx or go for imuran.

[JanW]

Hey, Brooke -- can you tell me what the nose repair job was like (pain, recovery time, etc.). How long does it take for the swelling to go down and how long before you can breathe out of your nose. My doc said he would take cartilage from the rib.

[Sangye]

Could you start a new thread for nose surgery due to saddle nose? It's very useful info and it'll be hard to find it if it remains in this thread.

[JanW]

It's done, Sangye!