A Hug From A Rubberband

[annekat]

Man, this is all scary stuff. I had a lot of breathing problems and coughing, which I thought were pneumonia, for a month or so before dx. Breathing problems continued for quite awhile after dx.... for me it was less of a rubber band feeling and more like fairly severe asthma. I had inhalers which helped some but not a lot. I used a nebulizer in the hospital but have never had one at home. It sounds like a good idea for you, for sure. My breathing problems could be relieved by coughing something up, but that could take hours. It probably took a couple years for me to get a lot better with the coughing and breathing issues. It may have been from the lungs at first, but ultimately I'm sure it was stuff dripping down from my sinuses and collecting in my bronchial tubes until it could be coughed up. It is so much better now, though it still happens.

I think if I were you, I would not bother going to the Kaiser advice nurse unless there was nowhere else to turn. You could of course go to the emergency room if things get really bad. You don't want to die of asphyxiation. But I would get with the great new rheumy that you have and get her recommendation for a really good pulmonologist, preferably one with Wegs experience. Kaiser could be a problem if that is the main place you can be seen. I guess I'd consider changing insurance, if you keep running into such duds of doctors there. I know none of it is easy. If your work gives you Kaiser, I guess you don't have a lot of choice. I hate to hear of "the system" making it so hard for people to get the expert care that they need. Is your great new rheumy with Kaiser, or did you manage to get her some other way?

[Alysia]

Oh man, just had the craziest experiense I've had in ages. Woke up at night and had again this uncomfortable feeling in my lungs. Went to the bathroom and felt pretty much as useusual. Then was going to go back to bed and turned off the lights when suddenly it felt like everything went black and I started to feel really dizzy and out of breath. Found the door handle to the bathroom and kept holding that while searching for a light switch but couldn't find it - like not having a recollection where exactly it was. Soon fell to my knee and was there knee standing trying to find the lights while feeling out of breath, dizzy and like everything was pitch black. My spouse heard me going down and turned on the lights and I could return to bed. Still feel the squeezing senstation and some pain but not as hard as a while ago. Slightly nauseous and slight buzzing sensation in my ears. Was thinking about callin the hospital, but we discussed I'd get some sleep and call them in the morning. I do start feeling better.

Hi,
scary. ask your doc about it. if it can comfort you, it happened to me, and not once. it is the "start" of fainting, and it happened to me in a lot of situations: when I didn't drink enough, when I had ears problems, very low blood presure and more... take care and update us what your doc said about it.

[mishb]

I don't get any breathing issues or a tight chest before I feel I am about to faint, but I do know that an anxiety attack can cause this.

I would certainly get your doc to check it out.

I hope the new day finds you feeling much better

[Wegetarian]

Hi,
scary. ask your doc about it. if it can comfort you, it happened to me, and not once. it is the "start" of fainting, and it happened to me in a lot of situations: when I didn't drink enough, when I had ears problems, very low blood presure and more... take care and update us what your doc said about it.

I feel really good now, slept until 10am and woke up feeling quite OK. Even walked to the local store to buy groceries, but after making a quick lunch I felt I have to go to rest. No issues with my lungs, and except for the fatigue I feel great.

Called the hospital and they said its most likely a side effect of the MTX. I think I most likely overdid myself by going to the party and I was essentially up for 7 hours - mostly sitting but still I haven't been away from bed that long after my operation which wa in early June. They did ask me to report if something similar happens again and will notify my doc.

Just sucks since I had already told my spouse she could go out with her friend tonight and they would have had a hotel room and the time-off would have been so great for her. We did decide it might not be a good idea for her to be away for the night again, if something similar happens.

Also discussed with my spouse that I'll skip having dinners for now, and only have like lunch with friends maybe twice per week (I usually just have to go bed after lunch and some chores anyway). I have mixed feelings about that, since I so love seeing friends after being alone in the bedroom for so long - but I don't want to stress my spouse with having to deal with the children alone and I also think I need the rest in the evenings.

[Alysia]

I feel really good now,
Called the hospital and they said its most likely a side effect of the MTX.

Hi,
I'm glad you are feeling good.
considering MTX, as far as I know (please correct me anyone if I'm wrong), it should not be taken at same time with folic acid and with sulfa.
if it is side effect of it you should ask your doc before the next taking.
I'm taking MTX differnetly then others here. I'm taking 2.5mg a day X 6 days a week, to avoid vommitting. maybe it might be good way for you too.

[annekat]

Alysia, one correction on the MTX; according to most docs it SHOULD be taken with folic acid and many or most of us do take folic acid with it to reduce the MTX side effects and maybe for some other reason, I'm not sure what. Don says it helps with hair loss, for one.

As for sulfa (Bactrim or other brand names), yes there is some warning about that on the product info sheet, but my doc, and others on here, have said it is insignificant as long as certain things are tested regularly. My doc had to fight with my insurance company to get them to continue covering MTX if I was taking Bactrim, because of what it says in the info. They eventually agreed to approve it through Dec. of this year. Then I may just pay for the Bactrim out of pocket, because it is cheap, and I will only pay $4 more per month. Then they won't know I'm taking it and will keep covering the MTX, which would cost me $54 or more out of pocket. My doc thinks it is important for me to keep taking the Bactrim to avoid lung infections. I feel no issues and am fine with that.

I would be interested to know why most people are asked to take MTX weekly but you do OK with taking it in daily doses.

[annekat]

Wegetarian, I'm glad you are feeling better. It does sound like you overdid it a bit. Maybe too much alcohol with the MTX, too. Take it easy. You still need time to get used to the MTX.

I'm sort of wondering, with both you and Nikki having lung problems but just being on MTX, if you should be on something stronger like CTX or RTX. But then, I don't know that you have actual WG lung involvement, or maybe it is just the effects of stuff dripping down from your sinuses.

As for the dizziness and fainting, that could be from ear issues related to the sinus issues. Just 2 or 3 times in the last 5 years or so of probably having Wegs, I've had an attack of vertigo where I had to lie down for a couple hours or more, otherwise I might have fainted or vomited. I assumed it was from balance problems due to ear malfunctions. I'm glad it rarely happens but it's scary when it does. It is hard to know what is going on inside the middle or inner ear.

Take it a little slower and give yourself some time. Avoid stress. I'm sure your spouse doesn't mind adjusting her plans to help you cope. It will get better and you will feel better.

[Alysia]

Alysia, one correction on the MTX; according to most docs it SHOULD be taken with folic acid and many or most of us do take folic acid with it to reduce the MTX side effects and maybe for some other reason, I'm not sure what. Don says it helps with hair loss, for one.

As for sulfa (Bactrim or other brand names), yes there is some warning about that on the product info sheet, but my doc, and others on here, have said it is insignificant as long as certain things are tested regularly. My doc had to fight with my insurance company to get them to continue covering MTX if I was taking Bactrim, because of what it says in the info. They eventually agreed to approve it through Dec. of this year.
I would be interested to know why most people are asked to take MTX weekly but you do OK with taking it in daily doses.

Hi Anne,
thanks for your comments.
about folic acid, I am taking it, but at differnet times: MTX in the morning and folic acid in the evening.
about sulfa: my doc said it is better not to take sulfa at all with MTX, because of risk of intoxication, although it is rare. I know some people here take both. maybe he told me not to take sulfa with MTX because sulfa elevated my ALT too much.
about my way of taking it: I inquired my doc about it and he told me to trust him. so I trust (have no other choice....)

[Wegetarian]

Maybe too much alcohol with the MTX, too. Take it easy. You still need time to get used to the MTX.

I'm sort of wondering, with both you and Nikki having lung problems but just being on MTX, if you should be on something stronger like CTX or RTX. But then, I don't know that you have actual WG lung involvement, or maybe it is just the effects of stuff dripping down from your sinuses.

Nah, I only had half a glass of wine during the evening. Decided to go by car since the buss route would have involved 1.5km walking each way, and taxi would have been like 70-80 euros and I knew I couldn't drink much anyway. Had I been able to drink all the booze it would have been an easy choice though

The X-ray's were clear and I think cutting down the pred also made my cough rarer, from what I discussed with the doc I shouldn't have it in my lungs - but of course it is a concern for me.

Take it a little slower and give yourself some time. Avoid stress. I'm sure your spouse doesn't mind adjusting her plans to help you cope. It will get better and you will feel better.

Oh she's been very helpful. But the last three months have been very rough to our family. The friend she was going to meet today is someone who lives far away and they meet very seldom. As I was feeling better I told her to go, but that it would be good if she returned for the night just in case and dunno how I feel in the morning if the kids wake me up before 6am as they often do.

I am bit worried though as I only took 10mg of MTX and the dosage will slowly increase to 25mg.

about folic acid, I am taking it, but at differnet times: MTX in the morning and folic acid in the evening.
about sulfa: my doc said it is better not to take sulfa at all with MTX, because of risk of intoxication, although it is rare. I know some people here take both.

My doc prescribed the folic acid 4-12 hours after taking the MTX. We discussed I wouldn't take the stomach pill the following morning as it was also in the list about drugs which might have some synergy effect. I'll ask her if I should skip the sulfa during the MTX, I take them almost the same time. Thanks for the tip

I think I read somewhere that the dosage is weekly to give the body some time to recoup after taking MTX, but that's just from memory I don't have anything to back it up with. I think for cancer the dosages for cyclos would be higher and daily, but for us they are smaller and weekly guess the same might apply for MTX? I'm happy for just being on MTX though, I mean it should be the lightest drug. I guess if it doesn't work as planned I can try something stronger. I guess I'm not in a hurry anywhere, with proper care and frequent blood tests I suppose the condition won't get worse and I do expect the treatments to last for at least months anyway.

[Dirty Don]

I've been taking mtx for 2 years now...I had the nausea with it at first. My docs didn't do a build up of the drug, they just hit the WG as hard as they could and dealt with me as I reacted to the drugs. Anyway, doc put me on folic acid for hair loss...worked. Then tripled the dose to maintain. Helped the stomach also. And, she also had me split the dose of mtx into half about 12 hours apart...that worked too...allowed my stomach to deal with mtx...and it doesn't matter if the doses are taken near each other, as long as I keep doing it once a week with the mtx. I see no reason (but I haven't read everything you've posted) why the docs are building mtx up in you...it is imperative (in my and Mayo's collective mind) that you and the docs are aggressive with this disease as it doesn't let up if you don't keep 'feeding it' drugs. A build up is simply causing you problems that you don't need to face...they need to get to the dose they want you on to keep the WG off your back...or maybe they don't know or believe that protocol works...hmmmm...best of luck.