Methotrexate Journey

Sandi, sorry you are having a rough time, what side effects are you having? I seem to always have rashes or strange skin things, gastric troubles, headaches. I also had a flu thing that quickly turned to an infection that I needed antibiotics for and I usually don't get that sick so quick.
It is very hard to balance work and doctors sometimes.

Hi Sandi,

Maybe try making up a very diluted remedy from your Methotrexate (you can find directions here):
www.pdsa.org/forum/8-natural-treatment-methods/12854-how-to-attenuate-side-effects-to-medications.html

I also explained a bit more about it on page #12 of this thread. Take a dose for three consecutive days, further diluting the original cup six more times on day 2, then another 6 times on day 3.

This can help lessen or remove the side effects of any drug. It works best, of course, if you've stopped taking the drug completely, like you have.

My original offer still stands.

April

Sandy, I too, am sorry that you are having such a rough time. I know you are worried about your work; but, this, too adds to the stress. It would just be so nice if you had a work environment that understood your situation. I know this isn't always possible (I went through the same thing when I worked). I do have a friend who is a legal assistant at a worker's comp law firm--and they are always understanding when she takes off (she has RA).

Please try to take care of yourself.

Thanks, guys. I found out today that some of the problems I've been having may not have been due to the MTX anyway. I had an MRI on Monday and had to see a neurosurgeon today. I have a bone spur in my neck that is pushing half-way through my spinal cord. Surgery for this is a last resort, but apparently I'm at the last resort stage. A fall or car accident could cause the spur to sever the cord and cause paralysis. No walking on ice or snow and I have to limit use of stairs. I have surgery scheduled for April 9th (after a Moody Blues concert that I have tickets for). Can't miss that!

Anyway, it explains the loss of coordination and extreme dizziness that I've had, as well as a few other symptoms. All of this started around the time I began MTX, so I assumed it was that. Too many things going on at once to figure it out.

So, I'll get some time off of work next month and have a few weeks to chill out. In the meantime, my husband and son are upset about this and say they are going to take over laundry and heavy housework (everything is heavy for me right now - I have a lot of arm weakness).

Wow, Sandi, that's a lot to handle! Glad you're going to have it taken care of, though. Please be very careful between now and April 9th; we rely on you here! Good luck with the surgery.

Boy, Sandy, this is a lot to take in! I've never heard of a bone spur doing so much damage! At least you found out what is causing your symptoms. Please be very careful and don't try to tackle anything at work and home. And, good luck with your surgery. I think you will feel a lot better once this is over.

Wow Sandi, no wonder you are in pain. Good luck with the surgery and take it easy after it, hard way to get a rest but I am sure you will feel so much better after it.

Well that is a bummer Sandi! You have known all along that you had problems in/with the neck, but this bone spur is something new isn't it. I'm sorry you are having to deal with this - know all will go well with the surgery and hope you have a speedy recovery! Maybe this too will take care of the neuropathy.

Thinking of you!

I so glad they found this! Maybe this repair will make a world of difference for you. How long will the recovery be?
Erica

They found this because I called my PCP and asked for an MRI. I suspected I had stenosis. I started to have some of the symptoms over a year ago and mentioned them to a few of my doctors. I was losing my balance and was having weakness in my arms and legs. One doctor referred me to a Physiatrist who is supposed to help diagnose and rehab people in that situation. He pretty much looked at me and said I was fine. He said the weakness was due to prolonged Prednisone use and he couldn't help me. Sent me away, even though I did mention several times that I had herniated disks in my neck a few years before. My other doctors also blamed Prednisone and/or myopathy.

This past January, I started to have numbness and pins and needles in my arm when I moved my head. I also began to have shooting nerve pain down my arm. That's when I suspected something was really wrong and called the PCP.

The Neurosurgeon isn't sure if these things are permanent or not. I might not regain balance or strength after the surgery. It kind of makes me mad that this has been going on so long, I've been complaining about it, and not one doctor suggested an MRI. Once again, it's been up to me to figure it out, but only after it got to a really bad point. The arm weakness is so bad that a cup of coffee is heavy and my hand shakes. I drop things. I can't sit for long. A few household chores takes all day. I may as well be 80.

This surgery could fix the neuropathy. I know it will probably take care of the recent pins and needles in my one arm, but I'm not sure about the rest of it. It could be Lupus-related though because it always starts up when I'm in the sun.

Oh - recovery will be 2 to 4 weeks if all goes well. I will be in a neck brace for two weeks which will make me crazy.

Most of the doctors are like this now a days. They hardly ever want to do a MRI. Then when they finally do, its always 6 months to a year later. It's a good thing that you pushed your doctor to take care of this. Will you have to have physical therapy later on?
Try not to worry right now. Just take one step at a time. I think you are going to do good--especially once the surgery is over.

I'm not worrying much. Just concentrating on not falling for now. I'll worry about the surgery later - after April 2nd.

I'm not sure about physical therapy. I guess I'll find out.

Sandy, physical therapy could help you if you have any problems with your hands and arms. It would help you get your strength. You could even do the exercises at home.

I did have PT about 2 years ago. The problem is that my insurance only paid for 20 sessions. Twice a week for 10 weeks barely touched the problem. I originally went to do PT for the arm and leg weakness, but they had to work on my neck before I could get to that. We never did get to that before the sessions expired and it did little for my neck anyway. I'd assume the same thing would happen again. Of course I'll go if it's recommended, but I don't expect much.

I know what you mean; when I had Kaiser Insurance, they had me do my exercises at home for my arm and shoulder. I had torn my tendon on my shoulder and couldn't hold anything over 3 lbs. Things would drop out of my left hand.

Did you eventually get better?

Yes, I did after about 2-3 months. I was really good about doing my exercises at home. I eventually got back all the strength back in my left arm. But, I do have to be careful about carrying too much weight or lifting too much--because then, I seem to strain my arm (and end up with pain). Also, I don't lift much weights at the gym any longer. Once the pain starts up in that area, it can be unbearable.

Hi All,
Just wanted to let you all know that I went to my new doctor today, he thinks that it is not RA but he thinks that maybe my adrenaline gland is not working properly, need to have the test done and I am trying to organize this now, my local lab can't do it so I need to find somewhere, maybe the lab at the hospital can.

I forgot to mention the doctor took me off methotrexate

Oh you did get a new doctor! What did you think of him - what did you think of him feeling you probably don't have RA - what do you think of being off the meth?

I hope you can soon find a lab that can do the tests - did the doctor's office have any suggestions?

I'm keeping my fingers crossed for you!

Milly,
This could turn out being a lot better than having RA. It must be hard to actually diagnose RA. Do you feel better being off of methotrexate?

Sometimes I, too, think I've had trouble with my adrenal gland.

Good luck on getting these labs done!

Melinda,
I am happy about the meth, I don't really know how I feel about the new doctor, that's a big call to make after one visit and I am really in a bit of a spin right now, for 12 months I have been treating something that maybe I don't have, I have to have a look for information about the adrenal gland, I question that as well because I have been off prednisone since November 2010 but I suppose it's just another test so why not get it done.
I am going to the hospital today to see if they can arrange it to be done there.
Dee Dee, I am really confused and a bit upset at the moment, feeling very frusted and confused, is this all in my head? I just don't know,

I would really like to hear from you all what you think.

Milly, I would try to stay calm and wait and see how your next test results come back. It could be a good thing that you don't have RA--but it's too soon to say since you just went to see this doctor. Try not to worry. I really think my adrenal glands have been a little off, too.

How are you feeling phyically? The adrenal glands can affect your energy level and make you feel achy, too.

Dee Dee
Yeah I am calm, just confused, could this really be related to a drug (prednisone) that I haven't taken for over 12 months or is this new doctor clutching at straws.
I know all this started as soon as I stopped prednisone and yes I get tired usually mid afternoon and early evening but it is not just sleepy tired it is a low energy, can't move tired.
I am happy that someone is thinking and not just following a dx but I am really starting to worry is it just me, it is so long ago that I felt ok, is it just me or is there something wrong. Just doubting myself, what does normal feel like?

Milly,
I'll have to say that I haven't felt the same either--since I took the Decadron treatments. I've finally come to accept it. I, too, am not sleepy tired; just achy tired or bone-tired. And, it's been 1 1/2 years for me since my last meds.

Try not to worry. I've come to the conclusion that its either 1) from all the meds they have given me/you or 2) from being sick with ITP/RA/?. It's really hard to actually pin point everything. Don't forget that you just stopped taking the Mex and it's going to be a while before you know how you actually feel. And, it's not in your head. It will be a while before you know what's "normal" for you.

Wow Milly, that's quite a spin! I'd be upset and frustrated too. I don't think RA is that difficult to diagnose. How could they make an error like that? You were on a pretty nasty med to treat something that you may not even have.

Wow is not wrong, just don't know what to think. Don't know who to believe anymore. The new doctor want the methotrexate stopped and gave me prednisone again 10mg a day, small dose I know but do I really want to take another med to treat yet another thing that they don't even know if I have, I am thinking that I might just not take anything for a while and see what happens, I don't understand this thinking of taking a medication for something that is not dx.
At the moment I am just at the stage where I have had it with doctors, I am at a loss for what to do next.
I am angry about the methotrexate, like it's not as though it is paracetamol, it is a pretty harsh med.
I know I am going around in circles here, but I just feel like I am losing it, my mind is racing and I don't know whether to be angry, upset or relieved I am so confused!!!

You know, I just remembered that prior to my Lupus diagnosis, I had a Rheumatologist who thought my adrenal gland wasn't functioning either. He sent me to an Endocrinologist. I was supposed to have an ACTH to test the function, but he couldn't do it because I was on Prednisone and being on steroids skews the result since they are testing cortisol levels. That went no where.

Did this new doctor run any blood work?

That he has done, the ACTH test, he has also ordered cbc,ck, aldostcone, 17hp and a few others. It is hard to find any reliable sources for information on this.

I think I just have to stop spinning and wait and see what happens, the next few weeks are either going to blow up or everything will be ok.

I am a little scared on what is going to happen.