Methotrexate side effects - when do they kick in [Archive] - Wegener's Granulomatosis Disease GPA Support Forum

andrew

12-01-2010, 10:04 PM

begin whine

Hey all I'm having an awesome day. Snapped a rib again this morning (feels like the same one as last time) from coughing and now getting stomach cramps and the runs either from the chicken I had for lunch or from the Meth.

Tell me something: when do Methotrexate side effects usually kick in? This week was the third week stepping up to 2 x 10mg tablets which I took approximately 24 hours ago. I'm taking Folic Acid 1 x 0.5mg on the off days.

I'm thinking it's the chicken as side effects would surely have kicked in earlier?? Also I'm getting chills with the nausea and cramps which also makes me think it's the $^@#&@ chicken. :predrage::predrage::predrage:

end whine

Jack

12-01-2010, 10:08 PM

Snapped a rib again this morning (feels like the same one as last time) from coughing and now getting stomach cramps and the runs
Me too! :mad1: (I did my rib last night by leaning over the arm of the chair)
Bloody good fun this isn't it?

Hope you feel well soon. Avoid smelly chicken! :wink1:

DEE

12-01-2010, 10:11 PM

Andrew when i was taking mtx i felt sick on the day i took it for about a month .
the only other thing i found was i was tired for a couple or days after taking it
other than that only change from it because it was not holding wg down
good luck maybe have to change menu
eat muffins like Elephant and i
take care DEEx

andrew

12-01-2010, 10:18 PM

Haha yeah muffins sound like a good idea. Thanks for the tip on the side effects.

Jack: Yes, it's about as fun as underwear made from sandpaper. <- Just thought of that myself. An Andrew original.

The chicken was a bbq chicken from the local store of which I at some yesterday with no ill effects. Seems it had a limited shelf life!

Jaha

12-01-2010, 11:31 PM

Andrew,

I take mtx by shots (to avoid the nausea), every week, folic acid daily,bactrium MWF. I have side effects for the 2 days following the shots, bone pain,fatigue, muscle weakness, headaches and generally feel like crap. Then about the third day I pop back to semi normal. Think that the mtx kind of builds up in your system and can create more side effects the longer you are on it. I just know how I react to it and everybody is propably a different.

Jana

andrew

12-01-2010, 11:38 PM

Thanks Jaha. How much Meth are you on?

Jaha

12-01-2010, 11:44 PM

Andrew,

I am on .6ml shots and I think that is a very low dose, have been on it since I was comfirmed WG in Sept. I am just excepting and learning about WG, mostly from this forum. It's been a bumpy road already.
Jana

Sangye

12-02-2010, 01:39 AM

Andrew and Jack, I'm going to take up a collection from the group to have you each professionally encased in bubble wrap. No more sandpaper underwear for you!

Seriously though , I hope you both heal up quickly. :sad:

freakyschizogirl

12-02-2010, 02:06 AM

I take 10mg Meth a week and i first felt side effects last week. Nothing as yet this week. but definate Nausea last week, Lasted all morning. I have been on Meth just over a month.

jola57

12-02-2010, 03:48 AM

i have been on 10mg for over a year. No bad side effects but I do continue to have episodes of, delicately saying, "spastic colon". It comes unawares and at any time and anywhere. Then disapears just a s quickly just to rear its ugly @$$ at most inoportune moment again. So maybe the chicken was OK. Or was it the freezer parrot's revenge, huh. LOL

JanW

12-02-2010, 03:58 AM

Been on it since March and have had no side effects at all -- wouldn't even know I was taking it if I didn't pop the pills myself. I'm on 17.5 mg/week.

Although I've seen many on here struggle with side effects, one of the reasons that it's so popular in my doc's practice (particularly for RA patients) is the lack of prominent side effects, even at the highest dose he prescribes (32.5 mg), and people's ability to stay on it for years. You just can't drink much alcohol (some docs say none at all).

jola57

12-02-2010, 04:00 AM

I've had the occasional glass of wine and all is good, just monitoring the liver since always high levels of markers.

Geoff

12-02-2010, 04:35 AM

Hi Jola, I'll bear that in mind when you are next in London!!
So sad we didnt get to meet up this time, but great to chat on the phone (love your accent!!) :love:

pberggren1

12-02-2010, 04:55 AM

Jack

12-02-2010, 04:58 AM

If Andrew's is anything like the ones I suffer, they sort of go pop and give way. Probably not a total break, but it takes a few weeks for it to stop hurting and some days are worse than others.

Tim Roberts

12-02-2010, 06:24 AM

Andrew, I have been taking methotexate for almost a year and a half since my diagnosis in August of 2009. Up until about 2 months ago, I took 20 mg. a week orally. Most weeks I would feel nauseated the day I took it and then just "off" the next day - still a little nauseated but mainly tired and just not myself. I disliked the side effects enough that I talked to my doctor and changed from taking it orally to taking it by injection at the same dosage, again just once a week. I greatly prefer the injections as I have little if any side effects and I would strongly encourage anyone who is experiencing discomfort taking methotrexate orally to consider the injections. They are really very simpe and painless and actually the medication is less expensive as well. I hope this helps.

pwc51

12-02-2010, 10:49 AM

I was on mtx for about 9 months. Initially 20mg per week and this was upped to 25mg after about 6 months when some wg symptoms were creeping up. Folic acid was taken on day 3 after the mtx.

I hated the tablets with a passion - generally felt down the following day (Sunday) after taking it, but was usually good for work by the Monday morning! It wasn't until I flared about 6 weeks ago, stopping the mtx and starting the cyclophosphamide again, that I realise how bad I felt - not sure how much of it was mtx and how much was wg. Certainly the initial upping of the pred 10 fold and starting the cyclo I feel so much better again. I did react a bit to the second cyclo infusion but I can tolerate a couple of bad days every 3 weeks better than bad days every week!

I cracked a rib back in June / July, leraning over the side of my dinghy! It has never been teh same since!

I was going to have a colonoscopy the day after I flared as my bloods were showing bad signs - this was cancelled when I flared and, since coming off the mtx, those readings have started to recover, to the point where they don't feel it is now necessary!

I believe I am going to go onto azathioprine after this cyclo round.

There is an interesting article about mtx in the following document link - ACR/ARHP Wednesday/Thursday Daily News 2010 (http://www.nxtbook.com/tristar/acr/day4_2010/index.php#/38)

andrew

12-02-2010, 11:53 AM

Andrew, what the heck is going on here? You sound worse off than I do now. Is the rib broken at all? Did you have an x-ray? I sure hope you get feeling better soon. We know what you are going through.

I wish I knew what was going on. Just jumping from one thing to another these days :) The rib will be cracked as opposed to 'broken'. No xray this time but it's the same feeling as back in July.

If Andrew's is anything like the ones I suffer, they sort of go pop and give way. Probably not a total break, but it takes a few weeks for it to stop hurting and some days are worse than others.

Yuh huh exactly, made worse by the fact I'm still coughing up crap so every time I cough the world goes gray for a little while.

Andrew, I have been taking methotexate for almost a year and a half since my diagnosis in August of 2009. Up until about 2 months ago, I took 20 mg. a week orally. Most weeks I would feel nauseated the day I took it and then just "off" the next day - still a little nauseated but mainly tired and just not myself. I disliked the side effects enough that I talked to my doctor and changed from taking it orally to taking it by injection at the same dosage, again just once a week. I greatly prefer the injections as I have little if any side effects and I would strongly encourage anyone who is experiencing discomfort taking methotrexate orally to consider the injections. They are really very simpe and painless and actually the medication is less expensive as well. I hope this helps.

Thanks for that. I had read that you can take it via injection. Is this injection something you give yourself or does the doc do it?

I was on mtx for about 9 months. Initially 20mg per week and this was upped to 25mg after about 6 months when some wg symptoms were creeping up. Folic acid was taken on day 3 after the mtx.

I hated the tablets with a passion - generally felt down the following day (Sunday) after taking it, but was usually good for work by the Monday morning! It wasn't until I flared about 6 weeks ago, stopping the mtx and starting the cyclophosphamide again, that I realise how bad I felt - not sure how much of it was mtx and how much was wg. Certainly the initial upping of the pred 10 fold and starting the cyclo I feel so much better again. I did react a bit to the second cyclo infusion but I can tolerate a couple of bad days every 3 weeks better than bad days every week!

I cracked a rib back in June / July, leraning over the side of my dinghy! It has never been teh same since!

I was going to have a colonoscopy the day after I flared as my bloods were showing bad signs - this was cancelled when I flared and, since coming off the mtx, those readings have started to recover, to the point where they don't feel it is now necessary!

I believe I am going to go onto azathioprine after this cyclo round.

There is an interesting article about mtx in the following document link - ACR/ARHP Wednesday/Thursday Daily News 2010 (http://www.nxtbook.com/tristar/acr/day4_2010/index.php#/38)

Hey, glad you're feeling better these days AND that the colonoscopy is not necessary. W00T!!! Thanks for the link.

I'll see how it goes for the next few weeks on the tabs and see if it continues or gets any better (assuming that's what it was).

Lightwarrior

12-02-2010, 12:41 PM

I took 25 mg a week for 2 months and was so sick I couldn't eat for about 5 days each week after taking it. They cut me down to 15mg a week and I am sick for a day then I can move on. I was told it takes a month to 6 weeks for the proper level to build up in your system.

andrew

12-02-2010, 12:50 PM

I was told it takes a month to 6 weeks for the proper level to build up in your system.

Interesting. What happened to the Wegs during that time? Was there any increase in disease activity?

Sangye

12-02-2010, 01:33 PM

I did mtx injections for the 2 months I was on it. I was in horrible shape in those days, but I didn't feel any worse after taking the mtx. I stopped it because it caused pulmonitis (allergic reaction to mtx, not that uncommon). My symptoms and x-ray mimicked severe pneumonia. Andrew, is there any way you might be having the same thing?

andrew

12-02-2010, 01:46 PM

Sangye

12-02-2010, 01:50 PM

Okay. I hope he can help you. Hawk up a loogie for him to culture. :ohmy:

elephant

12-02-2010, 02:02 PM

Andrew I hope they do a culture on your sputum ( whatever the color).
You also need to rule out WG too....hope your better soon..:rolleyes1:

andrew

12-02-2010, 02:05 PM

Well they can have all the sputum they can handle :lol: I have buckets of it. Last bloods were actually quote reasonable. ANCA was down to 14 which is the lowest it has been since diagnosis. The only blips were white cell count due to the lung infection and Uric Acid which was sky high due to the Gout.

marta

12-02-2010, 02:47 PM

Wow Andrew. Holy crap, what a ride.

I started the process of changing over to Meth, but didn't actually make it there because of this flare. What the doc did say though is that taking it via injection is much better for the reasons that are mentioned in this thread (diminished side effects) and also apparently you increase your body's absorption of the drug. I was into taking it oraly - because I'm a bit of a chicken with self injections - but got talked into taking it via injection. My plan was to go to the local nursing unit and they could show me how and then I'd do it myself.

I really hope you get this ironed out and start feeling like yourself again. Nausea SUCKS! I can't think of too many things I hate more than nausea and vomitoriums.

Psyborg

12-03-2010, 12:45 AM

Nah I've had this @#$&@(! cough for nearly two months, way before I started the Meth. I'm also seeing the lung specialist dude tomorrow morning. Hopefully he can assist. I'm thinking that my chest infection hasn't gone away properly and I'll need more antibiotics. I'll see what the doc says tho....as long as he doesn't say "ok, now cough". :w00t:

I might be off base, but keep an eye out for stenosis with a persistent cough. It wasn't until way later that I realized my issue was in my trachea and not bronchitis. Actually not until I was diagnosed. I coughed a ton and it felt very similar to bronchitis, though with less mucus. Just my .02 :)

Tim Roberts

12-03-2010, 03:02 AM

Andrew, I should have indicated this in my previous posting but the injection I take weekly is sefl administered. I don't go into the doc for it as they taught me how to do it. It is very easy and takes just a matter of minutes. I know that people can be squemish about shots but this is really very easy. A very small volume (.8 of a cc) with a very small syringe and needle. There is really nothing to it. If I can do it, anyone can.

andrew

12-03-2010, 06:43 AM

I might be off base, but keep an eye out for stenosis with a persistent cough. It wasn't until way later that I realized my issue was in my trachea and not bronchitis. Actually not until I was diagnosed. I coughed a ton and it felt very similar to bronchitis, though with less mucus. Just my .02 :)

Wow, not off base at all. Stenosis is something my doc mentioned might be causing the breathing issues that originally inspired the referral to the lung specialist.

Andrew, I should have indicated this in my previous posting but the injection I take weekly is sefl administered. I don't go into the doc for it as they taught me how to do it. It is very easy and takes just a matter of minutes. I know that people can be squemish about shots but this is really very easy. A very small volume (.8 of a cc) with a very small syringe and needle. There is really nothing to it. If I can do it, anyone can.

Sounds easy enough :) I was self-administering injections for a couple of weeks after leaving hospital. Can't remember what they were but was reasonably easy to do. Thanks!

JanW

12-03-2010, 11:57 AM

Andrew: if you get endoscopy on a regular basis the doc will be able to see what is blocked up down to the first few rings of the trachea. I don't remember if you regularly see an ENT for this procedure though.

I too had a constant cough and throat clearing with stenosis.

vdub

12-03-2010, 12:07 PM

I have been doing 15mg mtx once a week for 7 months. Not sure if I feel crappy from the mtx or feel crappy from the pit drugs or the wg. But I do generally feel crappy. Given that, I do have several beers a day.... So far, no problems and AST, ALT, and other liver functions are all good.

I have pondered this delima (beer or no beer) a lot. The WG will cut my life expectancy by X amount -- who knows how much. I'm 60 now and expect I'll make it to 70 given the WG.

The lack of a pituitary increases death by 1.3 to 2.2 times more than an otherwise healthy person. So, that cuts me back to reaching maybe 65 or, if I'm lucky, 77. Believe I'll drink the beer and be happy. Maybe I'll have some wine, too....

I had an MRI of my brain last night. The pit is still a useless, lifeless, clump of tissue and hasn't grown any, so that's good. But the MRI also showed that I have sinusitis, so increased my normal amount of cortisone (now on 30mg/day).

On the advise of you guys, I have requested a referral to the Univ of Utah Vasculitis Center to get a 2nd opinion. Maybe they'll take me off the mtx altogeather.

pberggren1

12-03-2010, 12:31 PM

Hi vdub:

It is hard to know what the right thing to do is sometimes. I'm not sure if a few beers is going to interfere with your meds or not. It is good to hear that you are going to get a second opinion from Utah.

elephant

12-03-2010, 02:01 PM

I am glad you are getting a second opinion, hope it is someone who see's many Wegeners patients. Hope you get in soon.

Sangye

12-03-2010, 02:09 PM

Vdub, I understand your logic on one hand, but consider this: Several beers a day while on mtx is way too much alcohol. Even if your liver enzymes look okay right now, damage can occur gradually and show up suddenly. With the liver, that damage is often permanent. You can live a regular lifespan with Wegs, but you need your liver to do it. Poor liver function means you can't take the meds you need to keep Wegs under control. Wegs doesn't necessarily kill you quickly. It can take decades of losing one organ or function after another. Run this by your doc. I'm sure s/he will say the same thing.

Jack

12-03-2010, 11:13 PM

Snapped a rib again this morning (feels like the same one as last time) from coughing
How is the rib Andrew? It is the third day for me and that always seems to be the worst. Rib pain seems to behave very oddly with me - it hardly hurts at all at first then gets worse for a few days before starting to slowly improve. However, still get some episodes of pain weeks later and it takes a very long time to clear up completely.

JanW

12-04-2010, 04:29 AM

I was stopping in to say the same thing that Sangye says, vdub. I too take mtx, and can tell you that even when I was on the tester dose, and was told that I could drink moderately, my liver enzymes spiked enough that the doctor took me off of of the drug and thought I might never be able to tolerate it. I was nervous about this naturally, because he said that imuran or cellcept would likely have more severe side effects, and I didn't need the big guns of rtx or ctx. The thing about WG is that, in addition to not wanting to mess up your organs, you don't want to have rule out drugs you may need to have in your arsenal at some point because this is a tricky disease.

By moderate I meant that I would probably have 5-6 drinks on a weekend, and never drank around my dose day (which was Wednesday at that time). I have cut that back to 1-2 drinks per week, and never had a problem since.

He was taking my bloods biweekly at the point, and noticed the different within 2 weeks, at a 10 mg dose.

It's far from certain that WG will shorten any of our lives. Has more to do with the severity of the disease and it's treatment.

andrew

12-04-2010, 08:05 AM

How is the rib Andrew? It is the third day for me and that always seems to be the worst. Rib pain seems to behave very oddly with me - it hardly hurts at all at first then gets worse for a few days before starting to slowly improve. However, still get some episodes of pain weeks later and it takes a very long time to clear up completely.

Hey Jack. You're weird! :tongue1: My rib is still killing me and causing me to walk like I have a pole up my nether regions. The issue is that I'm still coughing. Each time I cough I feel a 'crack' again. I had a coughing fit yesterday morning. That was interesting to say the least. I have a bucket full of Panadeine Forte which helps a lot with the pain and relaxing the muscles around the rib. I'm taking as few as possible though.

Sangye

12-04-2010, 08:12 AM

Omigosh, I am just cringing reading about that, Andrew..... Cough, snap, cough, snap.... :ohmy::sad:

andrew

12-04-2010, 08:22 AM

I saw the lung specialist dude yesterday who actually turned out to be the Registrar but even with his training wheels on he knew a LOT about WG. We had a good discussion about the disease. He saw me for nearly an hour.

He is of the opinion that the persistent cough is the result of sleep apnea and the crap I'm coughing up is the result of a virus not an infection because I don't have a fever. He also noticed a spot on my left lung (from a recent x-ray) which was there when I saw his colleague back in 2003 according to my file. He needed a copy of that x-ray (which I've probably got in the garage somewhere) to determine if there have been any changes over that time. He sent me to x-ray to get a comparison picture as well as they have images from July and early November.

Sidenote: X-ray rooms are awesome now, they're all digital. No film no muck with, just point and click and the image gets sent to the requesting quack. Wasn't there at the beginning of November when I had my last one. Certainly wasn't there when I was 16 doing work experience in the hospital radiology dept. That was super fun! End sidenote.

He listened to my chest for a long time. He picked up my leaking Aorta valve as well. Damn, I was doing my best to hide that hahaha. I couldn't do the lung function test due to my cracked rib so I'm booked in again for February.

I'm also going for a chest CT, a sleep study and will see a dietitian. Will also have blood tests just before the next appointment in Feb and a sputum test if I can remember to get a jar from the hospital and am able to hoik up enough to get a decent sample.

He asked a lot of questions which I though was great. He apologised for taking a long time to read my file. I told him I had all day and he could take his time.

Oh, he also gave me a nasal spray to assist with breathing overnight and hopefully then also with the coughing??.

Once he was done he called in the Specialist, who also was a WG encyclopedia, to confirm all he had done. Specialist gave it the big tick of approval and I could finally go to the loo.

Thanks to my Mum who took me and waited half the day for me to be done :thumbsup:

andrew

12-04-2010, 08:24 AM

Cough, snap, cough, snap.... :ohmy::sad:

Sounds like an ad for breakfast cereal :tongue1:

Sangye

12-04-2010, 08:30 AM

Very glad to hear it's not a bacterial infection. Still, I'm glad you gave them them some sputum to check. The sputum checker people get very lonely during the holidays....

Your comment about waiting while he read your file made me giggle. My file at JHU is 6 in thick--no kidding. When Dr Seo comes in the room lugging it, he makes a big point of letting it THUD on the table. He said his patients who've had Wegs for longer have multiple files that thick, marked #1, #2, #3, etc.... :w00t:

Jack

12-04-2010, 08:38 AM

andrew

12-04-2010, 08:46 AM

That's good Jack I hope it starts to get better soon! I'm wondering if strapping around the torso would be beneficial? I find it slightly easier if I'm braced against something like the back of a chair or lying on the bed.

pberggren1

12-04-2010, 09:26 AM

Sangye

12-04-2010, 09:33 AM

Andrew, please don't wrap your ribcage. Doctors advise against that because it limits your breathing and makes it easy to develop pneumonia. The best thing is to hold a small pillow over the painful area when you cough or breathe.

Jack

12-04-2010, 09:44 AM

Exactly as Sangye says. :)

Sangye

12-04-2010, 10:07 AM

The best thing is to hold a small pillow over the painful area when you cough or breathe.
Just make sure the pillow has a puppy attached to it. Studies have shown it speeds healing.

788

andrew

12-04-2010, 11:43 AM

Oh ok I didn't know about not wrapping it, thanks Sangye. I'll give the puppy thing a go too :-)

andrew

12-04-2010, 11:46 AM

I just started seeing my Wegs specialist in July and my first file is already about 6 inches thick.

Andrew, I am curious as to what the nasal spray was that the doc gave you.

Also, with the sputum sample make sure that he is ordering fungal cultures and AFB - Acid Fast Basilli.

The nasal spray is called 'Nasonex'. According to the box it contains Mometasone furoate .05mg/spray.

Yep, the doc has requested both those for my sputum sample (took some effort to read the form though!).

pberggren1

12-04-2010, 12:04 PM

Nasonex may be OK to use short term like no more than 3 or 4 weeks. It can actually damage sinus tissue if used long term and create other problems.

andrew

12-04-2010, 12:08 PM

Hmmm ok. Not seeing the doc until Feb. Might be an issue then.

elephant

12-04-2010, 12:58 PM

Andrew not to be a poor sport but I tried every nasal spray out there ( over the counter and prescription) none of them worked for me. I wish you luck on everything that your going through.

andrew

12-04-2010, 01:06 PM

Thanks :-) Yeah I have my doubts too but I'll give anything a shot!

Sangye

12-04-2010, 02:09 PM

Nasonex creates rebound sinus swelling, which means as soon as the drug wears off your sinus linings and nasal passages swell up worse than before. You can use it very sparingly and it won't be a problem. Very. Sparingly.

andrew

12-04-2010, 04:03 PM

Sooo...what are you saying? :tongue1:

I did 'woopsie' my first dose because I read the insert and not the doc's dosage on the sticker. I take one puff into each nostril twice a day for two weeks then one puff daily for six weeks.

I didn't even realise that I had sinus swelling. Probably means it's been like that since forever and I don't know the difference.

Sangye

12-04-2010, 04:35 PM

I'm sure Jack will have something to say about all this when he wakes up.... :biggrin1:

andrew

12-04-2010, 05:02 PM

I'm sure Jack will have something to say about all this when he wakes up.... :biggrin1:

= "you wait until your father gets home" :biggrin1:

Jack

12-04-2010, 10:14 PM

Just woken up and yes, I've always got a few words in hand for nasal sprays. All bad!
My own GP and the ENT consultant sent me down this route before I was diagnosed and I ended up with huge rebound problems such that I could not breath without soaking my nose with the stuff. Eventually I went cold turkey and broke out of the cycle, but I would suggest that you don't go there in the first place. Nasal irrigation with saline works much better and has no side effects.

andrew

12-04-2010, 10:20 PM

Hmmm ok but how does nasal irrigation with saline reduce swelling?

Jack

12-04-2010, 10:27 PM

I suppose it depends on what is causing the swelling. In my own case it was simply that irrigation allowed me to be kinder to my nose and give it a chance to heal. All the heavy blowing, picking and attacks with sprays were not doing it any good and irrigation is a very gentle procedure if you take your time and let everything soak.

Sangye

12-05-2010, 12:45 AM

Hmmm ok but how does nasal irrigation with saline reduce swelling?
Osmosis. That's why you have to use the proper concentration of salt in water-- too much salt or too little will disrupt the fluid in the nasal tissues.

elephant

12-05-2010, 01:00 AM

Andrew the inflammation is from the WG, once that is controlled it will get better and I still do nasal irrigation's twice a day. I know if my sinuses hurt and I become more stuffy ( knowing that virus and infection have been outed) it's the WG coming out to introduce it's self!

freakyschizogirl

12-05-2010, 02:21 AM

I still have to psych myself up to irrigate...dunno if it'll ever be something i'm comfortable doing but i can see the good results so i will continue.

And as an odd note i do fine it very interesting what comes out. Elepant i still havent found any of the goodies you promised me when i started! I feel cheated now, lol.

elephant

12-05-2010, 10:57 AM

You didn't see the little Weggie guy when you irrigated you nose. He's a fast one. :flapper:

andrew

12-05-2010, 09:09 PM

Observation: today the cough was a lot better than yesterday. Still present of course but significantly less. That's a good thing even though it might be a one-off. Here's a curious thing though. In the afternoons from about 3pm or so I feel like I've got a fever. I get mild chills and my forehead feels hot. I have no thermometer but will get one tomorrow and see if I'm right. Assuming I am, what could cause this? Why would it appear in the afternoons? Tiredness and exertion perhaps from the day? Ideas welcomed.

andrew

12-05-2010, 09:41 PM

Duh! It's the codeine in the panadeine forte I'm taking for the pain form the rib. I take one or two in the morning then two at night. Between times when they wear off would be exactly the time I get the fevers. I think I'll be calling the doc tomorrow.

freakyschizogirl

12-05-2010, 11:56 PM

You didn't see the little Weggie guy when you irrigated you nose. He's a fast one. :flapper:

No i didnt Elephant...he must be very quick!!

elephant

12-06-2010, 12:37 AM

Andrew how many days has the fever been going on? Are you on a antibiotic?

andrew

12-06-2010, 12:44 AM

a few days and no antibiotic. I want to get one from the doc tomorrow.

andrew

12-06-2010, 08:41 AM

Hey I think my rib is starting to get better :) No painkillers required yet this morning.

Managed to actually hoik up a big chunk of mucus this morning. It was a thick kinda yellowy green. No wonder I feel like I'm breathing underwater with that crap floating around in there :) From my Googling it looks like it might be infected.

DEE

12-06-2010, 08:45 AM

definately sounds like a doctors visit needed Andrew, please take care

Jack

12-06-2010, 08:53 AM

You need to look after yourself Andrew. You can't afford to let this sort of thing develop, it need knocking on the head early on. This is no time for denial!

See how good I am at dishing out the good advice? Not so good at following it myself though. ;)

andrew

12-06-2010, 09:16 AM

Denial is a river in Egypt :)

I'm going to contact the lung dude today. If he's too busy to talk I'll make an appointment at the after-hours doc for tonight. Either way I'm gettin' me some pills!

pberggren1

12-06-2010, 10:34 AM

Any word on your sputum sample results? Yellow or green does not neccessarily mean an infection.

elephant

12-06-2010, 10:34 AM

You go Andrew, you don't need this infection to turn into something else. Esp having a fever and feeling pretty bad. So go to the doc now. Elephant is bigger than you. :)

Sangye

12-06-2010, 11:03 AM

LOL-- I'm glad our team of naggers has elbowed you into calling the doctor, Andrew. Maybe that's why your ribs hurt? You better go or Elephant is gonna stomp you. She means business! :biggrin1:

ScreaminMeanie

12-06-2010, 02:24 PM

I was checking into this thread to talk about mtx side effects and got sidetracked by your struggles, Andrew. Wishing you the very best with something that will help you feel better soon!

As far as mtx side effects, I'm on 20 mg/week, and after the first few weeks, they have been minimal. Mostly I just feel more tired than normal most of the time. Occasionally have a little intestinal upset. Leg pain, usually minor, for a day or two after I take the dose. I take mine on Friday evening with dinner, then sleep off most of the wooziness. I started out taking it Fridays at noon, but after having to go home from work early two weeks in a row, switched it to the evening. It's working much better for me now.

The biggest thing I learned about taking it (and I also take 1g folic acid every day), is to hydrate, hydrate, hydrate! On the evening I take my dose, I will drink 4-5 16 oz glasses of water between dinner and bedtime. If I don't, my lips will split open and I will have a raging headache the next day.

After my experience with Cytoxan 19 years ago, I am very happy that the mtx seems to be working without making me even sicker than the WG did!

pberggren1

12-06-2010, 03:33 PM

ScreaminMeanie: that is interesting about the amount of water you have to drink at bedtime because of the mtx. Do you have to drink alot of water during the day as well? Do you get any sleep having to get up and pee several times during the night?

Sangye

12-06-2010, 03:42 PM

Double check with your doc that it's okay to drink that much water when you take the mtx. I don't know how it's absorbed and metabolized, but with some meds it's possible to flush them out of you too quickly.

pberggren1

12-06-2010, 05:56 PM

I have trouble drinking that much fluid in one day, let alone water in one evening.:ohmy:

andrew

12-06-2010, 07:39 PM

Screaminmeanie thanks for the insight much appreciated. I too am on 20mg. My next dose is on Wednesday night so I'll monitor how I go with that.

As for the fever etc wouldn't you know it, no fever today. That's a real shame because I bought an $80 automatic, you-beaut thermometer thingo today. Also taken advice to get the sputum test in so I got a specimen jar on the way home tonight and will see what comes up in the morning :) Probably the best course of action in the end so we know exactly what we're dealing with.

Had to sleep sitting up last night for most of the night. I found these awesome programs on ABC24. Really enjoyed them. Don't ask me what they were but I do remember enjoying them :)

First day back at work after cracking the rib today. Took it slowly and have survived better than I thought I would. Tomorrow should be ok too as half the day is taken up by a Christmas party.

Anyone know how long it takes them to do the sputum tests?

Jack

12-06-2010, 09:22 PM

Sputum test - I think my last one took around three days.

elephant

12-07-2010, 01:00 AM

A sputum test takes around 48 hours to culture certain bacteria.

ScreaminMeanie

12-07-2010, 01:54 AM

Drinking that much water in one evening does not make me wake up to pee any more than usual (I'm a lifetime insomniac on top of being a Weggie; waking up 2-3 times a night has been normal for me my whole life). I was warned (I forget which packaging insert or manufacturer's website or doctor told me) to drink at least 2-3 quarts of fluids a day while I'm taking this. I'm not sure I'm achieving that every day, but I've learned the hard way that I have to do it at least the day of my dose or suffer the consequences. About an hour after I take the mtx, I can feel my lips start to burn from being dry. That helps to remind me to drink, drink, drink. FWIW, 4 16-oz glasses equals the 64 oz recommended daily by most nutritionists under normal circumstances.

Sangye

12-07-2010, 02:00 AM

elephant

12-07-2010, 03:19 AM

LisaMarie I was thinking about your burning lips too, could you be allergic to it?

ScreaminMeanie

12-07-2010, 03:51 AM

The amount is fine, my question was whether it was okay to drink a full day's worth of water in the few hours between dinner and bedtime. It's okay with ctx (and necessary) but I don't know if it affects the absorption of mtx. It could be why you're having symptoms of active disease if that's the case.

That is a good question, and I will bring it up with my doc next time I see her/speak to her. I know I am not just flushing it out, since it only goes in and doesn't come back out! At least not any faster than when I drink a normal amount of water between dinner and bedtime (which is 2-3 16-oz glasses). If anything, I pee less often on Friday nights than any other night of the week.

Lightwarrior

12-08-2010, 07:13 AM

Interesting. What happened to the Wegs during that time? Was there any increase in disease activity?

I had to stay on Cytoxan for the first 6 weeks I took Methotrexate so that I wouldn't flare.

jeriorleans

12-08-2010, 10:16 AM

jola57

12-08-2010, 03:39 PM

jeriorleans, I am sorry, as if you didn't have enough on your plate. How is A.J. taking to the injections?

DuaneHart

12-08-2010, 08:44 PM

I've been taking mtx for 6-8 months now. I started taking 25 mgs (8 pills) by mouth once weekly. The day after taking them I was totally knocked out---exhausted, ache, felt like I was run over by a sandpaper truck driven by a bad chicken (ha ha). I started doing the injections about 2 months ago (.8ml once weekly) and wish I would have done that from the beginning. Side effects are much, much milder. No nausea, just am tired for a day or two after--but not "have to lie down" tired. It seems to be more evened out rather than a big wallop, if that makes any sense. Hope you get feeling better Andrew!

andrew

12-08-2010, 09:14 PM

Thanks for that :)

I just had this week's dose tonight so I'll see how I go over the next day or so. I must say though, that the injections look like much more fun!

Sangye

12-09-2010, 01:22 AM

The doctor just switched A.J. to the injections. He can't keep the pills down any more. As soon as I take the bottle out, he is looking for the bucket! We are suppose to go this week to get trained on how to give them. The doctor says a lot of it is mental, but its certainly real to him. and to me... I have to clean it up!
It's almost impossible to get past a conditioned response like that. Thank goodness there is the option of injections! They are truly painless, as neither the medication nor the needle hurt. Ask his doc about something called emla cream. It numbs the skin before injections. It's not really necessary with this size needle but just in case. You might consider doing the injections when he's distracted with something he likes-- maybe video games. He won't feel it and it'll condition his brain to relax when it's time.

JanW

12-09-2010, 01:50 AM

I continue to be very interested in all of these varied (bad) reactions to mtx. I've never had any of them, and my understanding is that in the RA world it is much beloved just because it's so well tolerated (and works really well to ease their inflammation and pain in a short number of weeks after starting). It definitely seems that I'm unusual in this regard and I'm not sure why.

andrew

12-09-2010, 10:33 AM

ScreaminMeanie

12-09-2010, 10:46 AM

Andrew, so glad to hear you're improving!

Jan, my side effects with MTX have been minimal as well. Since CTX almost killed me, but did succeed in getting rid of the WG for almost 20 years (w/no maintenance drugs), I worry a bit that lack of side effects = lack of efficacy.

JanW

12-09-2010, 10:53 AM

well, I have no side effects but my bloods went to normal and my symptoms disappeared, so that's effective enough for me!

Sangye

12-09-2010, 12:54 PM

ScreaminMeanie, I understand your logic, but there is not evidence to support it. If you're feeling better and your labs are improving, then you're improving!

Aren't we Weggies funny? We worry about the nasty side effects of drugs like ctx when we're on them, and we worry if we don't have them! I do the same thing. Hampster on a wheel. :rolleyes1:

andrew

12-09-2010, 03:44 PM

An update:
My rib seems to be getting a lot better over the last day or so. All of a sudden it's much less painful when I cough and I can move around much easier. Weird. Jack, does this happen to you or is it more of a slow progress?

Chest seems to be clearing up a bit too. I still have the cough but at least this morning it appears to be less productive than previous days.

No fever this morning either.

No painkillers required since about 10pm last night too.

Only real bother for me is of course the coughing but also the rib is restricting how deeply I can breathe. Natural course of events though and it should get better over time.

Also very very tired today. I can hardly keep my eyes open. So bad that I had to stay home from work today. Had a four-hour nap in my chair. Might be due to last might's MTX as I haven't felt this way before. I think last week's nausea though was unrelated.

Oh yes, just to add to the list of whinges, chest is very congested today. Gets a bit better as I move around tho. I dunno, I'm an enigma wrapped in a riddle wrapped in a conundrum wrapped in snot.

drz

12-09-2010, 03:44 PM

Sounds far worse than mine. I felt my rib starting to go as I put weight on it and stopped! It went pop, but I thought I might have got away with it - no such luck, but I stopped it from being really bad. I cough all the time and it is just a matter of bracing myself, nothing too horrendous.

Jack, what causes the pop sound? Is something tearing or the rib actually breaking. I have been warned that my bones are now brittle from heavy steroid use. Is that part of your problem?

Sangye

12-09-2010, 04:17 PM

I'm an enigma wrapped in a riddle wrapped in a conundrum wrapped in snot.
ROTFL If Wegs were a burrito....

pberggren1

12-09-2010, 05:29 PM

Andrew, you are definitely wrapped in something.:laugh:

Jack

12-09-2010, 10:47 PM

elephant

12-10-2010, 03:37 PM

Geez Andrew, get out of the burrito! Sorry you are so tired and congested. Make sure this is not an underlying infection, even though the side effects of methotrexate is tiredness and nausea. Hope tomorrow is better for you.

Sangye

12-11-2010, 02:32 AM

Don't worry, Andrew. Help is on the way!

http://icanhascheezburger.files.wordpress.com/2010/12/funny-pictures-cat-is-a-burrito.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

Sangye

12-11-2010, 02:35 AM

I did some research and have come up with a likely diagnosis for you, Andrew.

http://icanhascheezburger.files.wordpress.com/2010/12/228cf967-6f39-45da-8226-2785299cc441.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

andrew

12-11-2010, 05:48 AM

ROFL I'll get it checked out :)

gwenllian111

12-11-2010, 06:59 AM

Psyborg

12-11-2010, 07:09 AM

I feel our pain Gwen, I'm on cold number two since going on mtx, but at least this time I didn't develop the infection.

BrianR

12-11-2010, 07:37 AM

Ribs are a mixture of bone and cartilage and I have a feeling, but no proof, that I suffer from tearing the cartilage. I have done it several times by leaning over the arm of a chair and putting pressure on the rib cage and have also managed to do it by straining to pull things using my arms. I also seem to have a bad problem with my tendons and I wonder if there is some sort of connection. However, from what I can find out, cartilage and tendon are not related.

The progress towards the ribs getting better is very patchy indeed. Some days I can forget about it completely and on others it is really painful. From experience, I know that it takes weeks for it to mend.

Hi Jack. Marta, myself and several other people I know have from time to time "dislocated" a rib. I am not sure if dislocated is an accurate term or not. My chiroprator has described it as "popped a rib out". In all cases it has been quite sore and, after a very quick adjustment, has been almost instantly fixed. Not sure if this may be the case with your rib(s) but thought I would throw it out there.

Jack

12-11-2010, 07:49 AM

That is an interesting thought. I have examined my own ribs in some detail trying to find out what has happened and have not found anything unusual, but it is something I will check up on.

EDIT: Just been doing a bit of Googling and none of the symptoms described seem to fit with what I experience so I think it must be a partial break or tear in my case.

Sangye

12-11-2010, 09:41 AM

Hi guys

I started Meth two weeks ago, 10 mg orally. Feeling ok, but had a stinker of a cold and I think i've got a chest infection brewing. Should I be concerned if it turns into a full blown infection, ie, need to see a doctor straight away? I can't remember it's been ages since I last took Meth.

Gwen x
Gwen, I'm highly suspicious that a chest infection 2 weeks into mtx is actually an allergic reaction to it called pneumonitis. That's the classic presentation and it usually occurs soon after starting it. It mimics pneumonia. I suggest you get it checked asap.

Sangye

12-11-2010, 09:47 AM

Jack, in reading your descriptions I've been wondering the same thing. Rib misalignments are often incredibly painful but the pain is usually adjacent to the spine or a few inches away from it. Where is it that you have pain?

Jack

12-11-2010, 10:15 AM

On the occasions when I have hurt ribs, the pain has been quite mild to begin with and then built up over the first couple of days. Also it hurts at the site where the pressure was applied that caused the problem, maybe a third of the way around the rib and definitely nothing at the ends. This time I think I managed to stop before too much damage was caused because it only hurt bad for a few days and is now significantly better. In the past it has taken weeks. I can't feel any misalignments or lumps and bumps, everything feels to be in the place it belongs.

I'm just going to have to be EVEN MORE careful.

JanW

12-11-2010, 11:30 AM

Gwen -- I would say get it checked out, especially since you're on a pretty low dose of mtx. I'm not even sure that's a standard starter therapeutic dose here -- that was a one-week test dose before going to my therapeutic dose of 15 mg and then 17.5 mg.

Sangye

12-11-2010, 01:27 PM

Jack, you wouldn't be able to palpate anything out of alignment without training. But yeah, you have to be even more careful. Be particularly careful with twisting or reaching down to the side.

andrew

12-14-2010, 07:18 PM

Update: definitely getting better.

Issue is though that I feel a lot like I felt when I first left hospital 7 years ago - like I have to learn to walk and breathe at the same time. On the plus side I've only used my puffer once today rather than four or five times which has been normal. I do have an intermittent fever and loss of appetite and I'm reasonably confident that the MTX is killing me :wink1: NEVER have I felt so fatigued. I slept 36 hours over the weekend and could have done with more. Just ridiculous. I called my Immunologist today (primary WG doc) and actually got an appointment for tomorrow which was cool. I think the clincher was his assistant asking me how I was and me saying "f**king terrible thanks, how are you?" She giggled and said "how's 1pm tomorrow?". I'm going to discuss either injections or going back to the Imuran and taking my chances with the Gout. Seriously I can't live like this. I have to go to work, pay bills, go out and get drunk, chase women blah blah blah.

My cough is much less productive now. Just an annoying 'tickle' causing a mostly-dry cough now. I think as soon as the congestion in my chest clears I'll feel a bit better breath-wise. The lungs also seem to respond well to moderate (and I mean moderate) exercise too which is heartening. The lung function test in Jan/Feb will assist too I'm sure. Still, the breathing issue is a very disconcerting thing and I sometimes wonder if it's my mind playing tricks on me particularly when I'm sitting in the dark at 3am wondering why I'm out of breath when I've just been sleeping. It'll be the sleep apnea but telling myself that at 3am just doesn't seem to sink in LOL!

On the whole though I'm 100% on a week ago and 500% on two weeks ago. One other positive thing is that I've been forced to take things slowly which is actually a blessing and at times quite liberating.

All in all I don't need to go to the glue factory just yet.... :w00t:

jola57

12-14-2010, 07:22 PM

Well maybe out to the pasture for a bit, eh? Oh how I hated the little tickle dry unending chocking cough. It would strike in most inoportune moments.

andrew

12-14-2010, 07:24 PM

Well maybe out to the pasture for a bit, eh? Oh how I hated the little tickle dry unending chocking cough. It would strike in most inoportune moments.

LOL yeah. I went out to get some dinner the other night. As soon as I tried to order I had a coughing fit. Had to step aside and let others order while I had my seizure :)

jola57

12-14-2010, 07:27 PM

LOL mmmm brings so many memories

Jack

12-14-2010, 09:20 PM

Worst thing is when I answer the phone and then can't speak for coughing!

elephant

12-14-2010, 11:32 PM

Andrew you do sound @#$% sick! You are hilarious and have a great sense of humor throughout all this crap! Looking forward to your appointment and hopefully they will get to the bottom of this. I just read recently that rubbing vics on the bottom of your feet (covered with a sock) will stop your cough for hours. I don't know if this would be contraindicated with our WG disease/meds.

Sangye

12-15-2010, 02:30 AM

Andrew, I don't like the sound of that at all. The difficulty breathing, fatigue, cough... It sounds like Wegs and/or a reaction to the mtx. You can have both at once-- a two-fer. I'm so glad you're seeing your main doc tomorrow.

I don't know if vicks on your feet is contraindicated with Wegs, but it might be contraindicated with chasing women. :wink1:

andrew

12-15-2010, 04:42 PM

Yeah but....the S.O.B. started way before the rest of the symptoms and my ANCA is the lowest it has been. Went to see the doc today. He thinks most of my symptoms except the S.O.B and the fever are related to the MTX. he has told me to step back to 10mg this week then up to 15mg next week then stay there. If I can't tolerate that then I have to call my GP to whom he is writing a letter today. He was also a bit taken aback with the outcome of my visit to the lung specialist. He thinks they should be doing more particularly as I have a fever (which typically hasn't come up today). He's going to suggest that to them today as well :)

I would like to change my MTX night from Wednesday (tonight) to Friday just in case the fatigue kicks in again. Forgot to ask about that. What do you think if I went ahead and did that anyway? If I can't handle the reduced dose then I'll probably go back to Imuran and will have to 'suck it up' when the gout comes back. At least I'll be awake :)

I would normally think that some of my symptoms would be the WG acting up. There are so many other things to consider, from a lung infection, to the MTX reaction, to sleep apnea to the WG etc etc.

Oh yes...my gout is making a comeback again. Merry %$^#* Christmas hahahaha

andrew

12-15-2010, 10:50 PM

A eureka moment. Today my gout came back with a vengeance. Sitting on the couch just now thinking what the heck could have triggered it this time I remembered that right before the last attack I was eating toasted ham, cheese and tomato sandwiches with fair regularity (I love my toasted sandwiches). Guess what? Just started eating them again a couple days ago. Looked it up and what do you know, processed meat is one of the leading causes of gout. Sighs.

elephant

12-15-2010, 11:11 PM

Hi Andrew, I am wondering if you are having a reaction to the methotrexate. When I had my reaction to the imuran, I had fevers on/off, chest/back pain, flu like symptoms...and then on the other hand these symptoms can be Wegeners too. I was hospitalized and they checked my out like a guinea pig!
Just stay on top of your symptoms and bug the docs! Hang in there Andrew, I am here to listen ....:)

Sangye

12-16-2010, 01:07 AM

I hope they get the gout under control. Glad you figured out the processed meat connection! :blink:

andrew

12-16-2010, 03:32 PM

Oh yeah me too. Foot feels a lot better today, I think I nipped it in the bud.

Today: I feel a thousand percent better. Didn't take the MTX last night 'cause I plum forgot so will take the half-dose the doc told me to take tonight. I'm almost resolved to ask him to take me off the MTX and put me back on Imuran. There's a definite link between how I feel and when I take the MTX. I'm actually fully awake, my lungs are still S.N.A.F.U. but much less so today. I felt refreshed when I woke up this morning BEFORE my alarm.

Oh, one other thing. I sweat like a pig overnight. Pillows get soaked. Suddenly hit me yesterday that there might be an issue breathing in all that dried gunk so bought two new pillows. Wondering if that's part of the reason I'm breathing so much easier today???

Still got that darn cough though....

jola57

12-16-2010, 08:40 PM

Andrew, you get better now, you hear. I think its the season to get sick. I get funny neural symptoms and will make an appointment with neuro in the new year. Hope you keep feeling better every day.

andrew

12-16-2010, 09:35 PM

Thanks Jolanta! I'm feeling so much better today, almost like normal. Even yesterday I was running out of breath crossing the road at a slow walk. Today, I had to hustle crossing the same road and not a problem. Weird but cool!

Sangye

12-17-2010, 02:45 AM

Andrew, that sure sounds like the mtx was the culprit. I wonder if it was suppressing your immune system so much that you couldn't get over the bug you had?

andrew

12-17-2010, 08:02 AM

Didn't think of that but certainly makes sense. Might ask the doc that and see what he thinks too.

Sangye

12-17-2010, 10:55 AM

LOL He'll probably say "Uh, tell that Sangye chick to mind her own business." :laugh:

Minneapolismark

12-17-2010, 05:37 PM

andrew

12-17-2010, 06:34 PM

I take 25mg once a week and have been for about five months. I take it Sunday night and sleep more or less until Tuesday afternoon. I generally feel crappy and sad during this time. But I am such a noob that I have no idea if this good, bad, normal, bizarre or whatever.

No broken ribs though. I didn't know that Mtx would weaken bones. That is a very scary thought.

Yeah I've got no idea why I would react so badly to such a small dose. As for the ribs, it was two months of coughing that took it's toll rather than the MTX :)

Jack

12-17-2010, 09:08 PM

Breaking ribs by coughing is not the normal. Have you had a bone density scan recently?

andrew

12-17-2010, 09:30 PM

Not recently no. Last one was in about 2005 and all good.

Jack

12-17-2010, 09:32 PM

Well, you know what you should do next don't you? :wink1:

andrew

12-17-2010, 09:44 PM

Mowing the lawn?

Jack

12-17-2010, 09:50 PM

Yes, that would probably be my reaction too.

796

795

andrew

12-17-2010, 09:53 PM

Hahahaha yeah if I can avoid it, it doesn't exist.

I'll chat to the doc about a scan. *sighs*

Sangye

12-18-2010, 02:21 AM

ROTFL That was a hilarious exchange. :lol:

jeriorleans

12-20-2010, 03:01 PM

A.J. has now had two injections of the methtrexate. It still made him feel tired and a little sick to the stomach, but not near the problems taking the tabletes. He even managed to give himself the injection. I think this may work out. Now, if I could just figure out how to jam the bactrim and the folic acid into that little syringe......

andrew

12-20-2010, 08:11 PM

Hey peeps
Spoke to my doc today. Will be back on Imuran from tomorrow. He's thinking about trying me on Mycophenolate Mofetil which is more commonly known as Cellcept (just Googled it as I was typing). I'm not sure about this as Imuran was working nicely but hey, if he wants to give it a try then ok. Took my last dose of MTX last Thursday (only 10mg) and it's still making me soooo tired. It's strange that I should react that way. Might actually be interesting to see how I go back on the Imuran. I'm wondering if it was affecting me too but I was just thinking I was 'normal'.

Other than that, still got the stupid cough but aside from that and the fatigue, pretty not bad.

Jeriorleans, good to see that AJ is doing better on the injections. You might need a slightly larger syringe to fit the Bactrim and Folic Acid...ow!!!! :)