Methotrexate Journey

Milly,
I'm glad they finally found out what was wrong. Do they know what might have caused this? Sure hope you start to feel better.

Sandy,
Glad your surgery went well and you got to rest; it sure is a heck of a way to get your rest, though. Don't over-due it went you go back to work.

DeeDee, they are thinking prednisone but it just seems so long ago since I have been on it but I suppose anything is possible. I don't know much about it and I am finding it hard to find much info on the net, so I guess I wait again and see what happens

Milly, I was just wondering because I think the Decadron (steriod, too) slowed down my adrenal glands. Sometimes you test normal--but you are on the borderline. This has been the case with me for years on my thyroid. I'm hoping I don't have to take any large doses again. I've never felt the same since I had those meds. I do feel a lot better than when I first came off of them

Sometimes, though, you get real bouts of fatigue. Good luck to you and hope you feel better soon.

Back on the MTX injections. In the last week, my knuckles started to get large and inflammed and I feel like I've been hit by a truck. Not the knuckles on the fingers, the ones on the hand that connect the fingers.

I saw the Rheumatologist today and she thinks it's either a bad Lupus flare or RA. I know I have to do this. 10 mg's twice a week. She told me to take a short term disability. Ha! Don't have that option.

Hey Sandi, sorry to see you are going back on it but you have to do something. Maybe the lower dose twice a week will be better then high dose once a week.

Is short term disability like sick leave? who actually pays you, your work or the government?

Sandy, How'd you feel why you were off of work? Did you get the flare up when you went back? And, if you do go on disablility for a while, you should still be able to get your insurance from your work.

I was doing well while I was home. The flare hit on my third day back at work.

I do not have any short term disability at all. If I was off, there wouldn't be any pay. My company agreed to pay me while I was off for the surgery, but they wouldn't do it again and I used all of my sick leave for the rest of the year. Basically, I can't take any time off.

I was just wondering if you think it was related to returning to work and all the stress assoicated with it or to the actual surgery? Things are such a bummer in this world! I use to have a lot of PTO and long-term disability that I could use--but never did use it. Do you have long-term disability?

I have no idea what kicked this off. No, I don't have long-term disability either. I'm OD'ing on Prednisone to get by.

Sandy, I feel bad for you that you have to go through all of this. Do you think you could be a little allergic to the metal? (or was it titanium?) It might take sometime for your body to get use to it. I'm allergic to all metals and start to react. I will say some prayers for you.

Dee Dee:

I don't know. I did insist on testing myself with the titanium before the surgery. I had a screw taped to my leg for a week...no reaction at all. I realize that is not the same as a systemic reaction but that is the chance I had to take. I did a lot of reserach about titanium and reactions and found that they are rare. I felt pretty safe with it and didn't really have a choice with this surgery.

But - my fingers were hurting a bit before the surgery, so I think this was starting then. They are always swollen, but this was a different thing; I had trouble holding a pencil or a pen. It only got really bad after I went back to work.

Sandy, from what you said, it's probably been coming on for a while, then. When you were off, you were able to rest a lot more. It was probably triggered when you went back to work; maybe a subconscience trigger from the stress related to work. I use to have trouble with my fingers and hands when I worked. I typed a lot and even after I stopped working, they would ache off and on.

I am on my way to church and I will say a prayer for you.

Thanks! Yes, I sure was able to relax while I was at home. First time I said "Ahhhh" in a vrey long time!

Hey Sandi,
How are you feeling?

Still doing the injections twice a week. 10 mg's on Wednesdays and 10 on Fridays. I still don't think it's helping since I had to up the steroids last week to about 40 mg's a day.

I started to lose dexterity in my hands from the joint swelling. It's harder to type and write. My fingers won't go where I want them to. But....I'm still plugging away.

Sandy, how long are you going to keep doing this? This is really hard on your body--pushing when it doesn't feel good. Just my 2 cents and worried about you.

Thanks. One day at a time. I've started to think of the days in increments. Get up and get ready. Make it to 10:00. Make it to noon. Then 3:00, then 5:00. Go home and do only what is necessary. I've been going to bed before 8:00. Pitiful life.

To top it all off, I've taken on some senior picture photo shoots on the weekends. Processing the photos really takes up a lot of time. Just taking the pictures is hard. I did one yesterday and can hardly move today. A lot of crouching and bending. It's something I really enjoy though so I try to do it when I can.

I'm trying to not do too much today so I can be ready for work tomorrow. I'm going to float in my pool.

Relaxing in the pool sounds good. At least you are trying to rest a little more. It's also good that your kids are grown. I still have a son at home--but it's not the same as raising young school age kids.

I still have a son at home too, but he is 23. I am grateful that I only had ITP to deal with when my kids were growing up. That was doable, although not easy. I'd never be able to keep up with work and kids now. I guess it all worked out.

Sandi, sorry to hear you are still having problems. I hope the float in the pool was good, take it easy and look after you

I give up. I saw the Rheumatologist today and she wants to add two more meds. I can't do it any more.

Sandi, words fail me. I am so sorry to know the latest. I can't imagine what it must be like dealing with your issues.
Know that we are all thinking of you & hope you are feeling better soon.
mj

Sandi, I am really sorry to hear things are so rough for you. I can just hope that some day soon there will be an answer for you.

Sandy, I do feel bad for you and how you must feel. I just don't think that two more meds will do the trick and make you feel better. You know how they say you take one med to fix this and another to fix the first med. There must be a better answer to all this. Just don't give up, and maybe you need another second opinion (what about one of the doctors on this board?).

I do say prayers for you. You've worked so hard; you deserve better.

I know what I need to do. I need to take a step back. Stop working and eliminate that stress. Then I would have the time to manage the pain with the acupuncture mat, sleep and other methods. I could back off of the meds instead of bumping them up to get through the days. The drugs are destroying me.

I am failing the simple strength exams. When I lay on the exam table and the doctor asks me to raise my leg while she pushes lightly, I can't lift it.

She wants me to take Elavil and Sulfasalazine (an RA drug that is contraindicated for Lupus). Those do not sound like a good idea to me.

Sandi, I don't know if this is an option for you but would it be possible to cut your hours, I know since I have cut my hours (I only reduced them by 8 hours a week) I feel better. I now only work six hour days, still feel like I am doing something but work has become less stressful and home has become more important.

Sandy, I think you feel this way from work and all the meds. Also, my husband took Elavil before and it use to leave him feeling "foggy" and with a slight "hangover" feeling. I don't think this will solve how you feel.

You do need to cut back on work or stop all together. You are important and your health is important.

My Rheumatologist wants me to cut back my hours. The thing is, my position is full time and there isn't enough time in a day to get the work out as it is. Also, in order to keep health insurance, I have to work at least 32 1/2 hours a week. I don't think my employer would appreciate a shorter day. He didn't even like the fact that I had to leave for a doctor appointment yesterday. I did go back, but I had a lot of things blowing up while I was gone. I'm sure he'd prefer an employee that he can count on 24/7. What business doesn't? I've done that so far come hell or high water but I've been out of steam for a very long time.

I have a feeling that Elevil will make me feel hungover. I already feel that way from Methotrexate and Vicodin. If I add another one, I'll never wake up. She thinks I'm not getting enough restorative sleep which is the reason for the Elavil. I think a brick over the head would be better than another drug.

Sandy, I know most employers like employees to be full time, but you have put in a lot of years there. Maybe there is a good chance that he will work with you to cut back on your hours. It would sure help your health and then you would feel more like going to work. Would it hurt discussing this with them?

Yes, because then I'd have to admit just how bad things are. No one really knows. I think I'm hiding it pretty well.