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peach224
11-13-2006, 10:35 AM
Over the last two weeks, I have been more tired than I ever thought I could be. I just go to work and lay around and sleep. I feel like a zombie. Plus, I am freezing all the time. My family is sitting around in t-shirts with fans on and I am under blankets wearing gloves and sipping hot tea.

And over the last couple of days, I have caught a cold. Does anyone thing that this has anything to do with the fact that I started methotrexate two weeks ago, or is this something new?

MARYCAIN
11-13-2006, 12:07 PM
Peach, you need to call your doctor right away and let him/her know about your symptoms. Methotrexate can make you feel lousy, and a lot of people have nausea and vomiting. But it can also cause anemia (a decrease in red blood cells), which may cause unusual tiredness or fatigue, dizziness or fainting, and the inability to get warm you are describing. Did your doctor explain about taking folic acid supplements with your MTX?

Methotrexate reduces your body's ability to fight infection, so you need to let your doctor know right away if you have a cough, chills or fever, sore throat, or any symptoms of a cold or the flu. This is not a situation where you can tough it out with chicken soup and tylenol - you may need antivirals or antibiotics. So call the doc, please?

peach224
11-13-2006, 12:55 PM
Okay I thought I posted, but I guess not...

I am on folic acid supplements daily. The doctor started them again when he started me on the MTX. I have been on them previously, in conjunction with B12 injections because I am vitamin b deficient. I guess my body doesn't process vitamin b properly. It has caused peripheral neuropathies and pregnancy problems in the past. I stopped the folic acid and b12 injections about 8 months ago when i lost my driver's license and couldn't make the weekly appointments.

I will call the doctor this afternoon. I hate being cold and it aggravates the Raynaud's to the point where by 4 p.m., I can't do my job.

One more question, I have been having terrible reflux/heartburn, despite taking my ranitidine faithfully. Usually the ranitidine keeps it in check. Is this connected as well do you think?

MARYCAIN
11-13-2006, 01:30 PM
Heartburn is a common side effect of MTX, and if you had problems with GERD or acid reflux before, the MTX will probaby make it worse. Ranitidine is a histamine H2 blocker that reduces gastric acid production, but you might need one of the stronger proton-pump inhibitors like nexium while you are taking MTX.

You mentioned a problem with B12 absorption - do you have pernicious anemia? If so, you must continue to take B12 supplements! The extreme fatigue could also be a symptom of pernicious anemia - which can also cause pallor, shortness of breath, rapid heart rate, loss of appetite, sore mouth or bleeding gums, and loss of the sense of smell, as well as the neuropathy you mentioned. So if you are having any of these problems, the B12 might be the issue. B12 is easy to self-inject if you can't get to the doctor's office regularly, or someone else can do it for you if you're phobic about needles. There is also an internasal form of B12 available by prescription. Even the sunlingual B12 available OTC will help some, although it is no substitute for the injections. I take cochichine, which interferes with B12 absorption, also a mild form of thallassemia (inherited) so I have to take B12 when I'm on the other meds. My doctor is an hour away, so he just writes the script and I do the injections myself. Sounds like you need to talk to your doctor about this option too.

Keep us posted!

peach224
11-14-2006, 11:46 AM
So, I called the doctor (the rheumy) this morning (after I called in sick to work and told them I was going to see the doctor), and asked if I could get in today or at least speak to the doctor. I spoke to the nurse and explained that since I started the MTX, I have been feeling extremely tired and very cold all the time, I have symtoms of a bad cold, and oh yeah, I have very bad heartburn, despite taking medication to control that, and my chest pain has gotten worse. I also told her the symptoms have magnified over the last five days or so. She said the doctor has no openings today, but I will relay your message and call you back.

She called back about 90 minutes later and said that there was just no way that the doctor could fit me in, but that she did talk to him. He said the heartburn was not from the methotrexate, but from reflux and she was calling in a stronger prescription. I asked about the other symptoms and she said "well you have lupus and it is getting towards wintertime. It is normal to be cold and tired in the winter with lupus." Otherwise, the doctor said he was not concerned, drink lots of water and rest when I can.

Okay. I guess I won't worry and try to get some more sleep.

MARYCAIN
11-14-2006, 12:58 PM
What a jerk! Are you otherwise okay with this doctor? Because this is not quality medical care! You know the difference between what is normal lupus fatigue for you, and what is different. And I doubt it's cold enough yet in California to seriously affect you. Do NOT let this doctor shrug you off - you know your body better than anyone else can. If things do not improve, call again and insist on being seen. And please get the B12 issue seen about - this really concerns me.

peach224
11-15-2006, 05:10 PM
The new medication he put me on is called AcipHex. I looked it up and it is for GERD, which I have been diagnosed with in the past. It looks pretty innocent and I am grateful for not having to deal with the intense heartburn. But, you'll love this part Marycain, long term use can lead to vitamin b anemia....

have a good evening

Lula2ya
11-15-2006, 11:29 PM
Peach, I had similar problems and I think it was from my methotrexate. I would get bad heart burn and not able to get warm. I would litteraly shake uncontrollably. I would be nauseous and extreemly fatigued. My blood work has never indicated anemia and my doctor didn't believe it was the MTX either. Then one day I was so sick and nauseous I couldn't even eat 2 bites without feeling like I would throw it up. Well 1 day turned into 8 days without eating I lost 10lbs which I couldn't afford to lose, so then the doctor was worried. I saw a gastro dr. and ended up having an endoscopy, they found gastritis (red inflamed stomach) and the gastro said he thought it was caused by the MTX. My rheumy then switched me to MTX injections. I am also taking aciphex. I was on nexium which healed my stomach problem but got too expensive. I no longer get nauseous or the chills. I am doing better on the injections, the pills were a nightmare from day one and unfortunately it took a year and that horrible episode to get switched. Where in California are you, your nurse sounds like my doctor's nurse. Wouldn't that be scary if they were the same. She really doesn't handle the phone very well. She blew me off one time and I ended up in the hospital. So now she handles me better, she knew she blew it and my husband was about to wring her neck.

peach224
11-16-2006, 09:40 AM
I am in Ventura County, about 55 miles north of downtown Los Angeles. It would be weird if it was the same doctors office.

The funny thing is, I normally am fine with this doctor, as long as I am in his office, face to face with him. If I am on the phone with his office or reading something he has written, I have second thoughts. But I feel like I am always second guessing myself and what I am feeling because I don't want to be a "nervous nellie" or making my symptoms into more than what they are because I know there could be more coming and I don't want to be the "girl who cried wolf".

I am tired and achy today but I think that it is because I worked an 11-hour day yesterday to make up for taking Tuesday off. Ahhh, responsibility.

MARYCAIN
11-16-2006, 12:35 PM
Peach, I ended up spending five months in the hospital, including almost a month on a ventilator in the ICU, because I let a doctor minimize my terrible back pain and convince me I was being a worrywart about muscle spasms in my back. I saw or called this doctor FIVE TIMES in the two weeks before I got critically ill and he told me the back pain was from muscle spasms where I had a healing compression fracture of the spine. Never drew labs - never ordered an x-ray or an MRI - when pain meds didn't help he said it was because I had built up a tolerance for them, and prescribed higher doses. He was sympathetic, compassionate, had a great bedside manner, and seemed so reasonable and intelligent that I felt like a nuisance continuing to bug him. HE WAS ALSO A LOUSY DOCTOR AND IT ALMOST KILLED ME AND LEFT ME WITH PERMANENT DAMAGE TO MY SPINE. I learned the hard way that there is a big difference between a "nice" doctor and a "good" doctor, but it was a very expensive lesson for me and my family. The doctor I go to now isn't nearly as nice but now I'm a lot more concerned with competence than bedside manner.

Please do not ever let a doctor shrug you off, or minimize your pain, or treat you like a hypochondriac! If you ever have second thoughts about the quality of medical care you are getting - LISTEN TO THEM AND ACT ON THEM - YOUR SUBCONSCIOUS IS TRYING TO TELL YOU SOMETHING. We would not accept second-rate service from a car mechanic or a hair dresser, but we allow doctors to get away with it because we take it on faith that they are a lot smarter and more knowledgeable than we are. But sometimes that faith is misplaced, so do your own research, ask questions, and get answers - it's your right as a patient. You do not work for the doctor - he works for you - and your body is a lot more important than a car! I think it's very hard for women to be assertive about our own health care, but it might save lives if we were!

Okay, that's my sermon for the day. :)

kkelly
11-16-2006, 01:34 PM
Marycain,
What a good point about "nice" vs "good" doctors. I have an extremely nice doctor (rheumatologist) - so far I think he is good. He missed one major thing for me but my GP is excellent and caught it so maybe between the 2 things are ok?
They see me on a moment's notice and have bent over backwards to try new meds when the old ones didn't agree...
It is so complicated having Lupus and I am so grateful that people on this site are really on the ball about things- it really helps!!!

Lula2ya
11-16-2006, 03:02 PM
Hey Peach
I'm nowhere near Ventura, So no chance of them being the same one. Maybe our nurses went to the same school. <<<LOL >>>
I actually really love my doctor, I don't believe he is the one who has blown me off in the past, it was the nurse. I must admit though Marycain that sometimes I do wonder. I feel so lousy most of the time and he doesn't seem too overly concerned. He seems to think I'm doing well. And my labs always look great. <What's a girl to do?> It causes me to think I really must be a baby or something. BUT in reality I do have a very high pain tolerance and don't complain or even take pain meds. I only call him when absolutely necessary. And I hate calling them because I don't want to be one to complain or whine. I often think what it must be like on their end receiving these calls everyday that probably turn out to be nothing but the people being babies and complaining. The doctor himself has never made me feel that way, infact if I do complain to him he does listen because he views me as a non-complainer. I would hate to switch docs on account of a dumb nurse but You really made some good points and gave me something to think about. I haven't forgotten that I did end up in the hospital on account of being blown off. :microwave: I think I rambled... sorry.