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Methotrexate Journey

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 2 months ago #23432 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Well, they will probably know that then.

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14 years 2 months ago #23749 by milly
Replied by milly on topic Re: Methotrexate Journey
So I am now three weeks with no methotrexate and I have not felt this good for two years, no pain, no skin pain. I haven't got the results of the tests yet but I think all will be ok.

I am now thinking that the original pain may have been coming of prednisone and maybe it would have went on it's own. I guess time will tell (I am assuming that the methotrexate would be out of my system by now)
There is no practice run in life.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 2 months ago #23750 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
I don't know, Mil. I think it stays for a while. I've been off for six weeks and can tell that it's still working a bit. I was on the injections though which might make a difference. I'm glad you are doing better!

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14 years 2 months ago #23780 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
Milly,
It's great to hear that you are feeling better. Sometimes it's hard to pinpoint what the problem is.

Sandy,
I want to wish you good luck with your surgery and to wish you a speedy recovery. Please keep us posted.

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  • Melinda
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14 years 2 months ago #23792 by Melinda
Replied by Melinda on topic Re: Methotrexate Journey
Hey my ex-meth head friend [although still my friend] it is great to hear you are feeling so good!! That is really good news! Let us know when those test results are back].

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14 years 2 months ago #23905 by Ann
Replied by Ann on topic Re: Methotrexate Journey
So what happened with the steroid cover, Sandi? Did they do it without prompting?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 2 months ago #23908 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
No, they didn't do it at all. I don't seem to be any worse for wear. I just had IV fluids and antibiotics.

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14 years 1 month ago #24278 by milly
Replied by milly on topic Re: Methotrexate Journey
Well I have finally got the test results back and my adrenaline gland is working but only just, so back on prednisone for me, certainly explains a lot though.
My platelet level is down to 130, hct level is high and mcv level is high.

So I have started back on low dose prednisone for a month and the doctor is going to discuss the results with a specialist in Sydney, from what he said today there is an injection that you can have that stimulates the adrenaline gland.
What a great pickup from this doctor.
Sandi,
I hope you are all recovered from your surgery.
There is no practice run in life.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 1 month ago #24279 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Wow Milly - I'm glad they found that. How long were you off of Prednisone? What dose are you on now?

I go back to work on Monday. It was nice to have a break. I haven't really had one in 16 years. It's a shame you have to have surgery to get a break. I do have 3 other surgeries on the back burner.....none critical though.

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14 years 1 month ago #24280 by milly
Replied by milly on topic Re: Methotrexate Journey
Sandi,
I was on pred for about 10 or 11 months starting at 75mg for about two months and slowly tapering but I was really only on a dose below 25mg for the last month of the process.

I have been off pred now for 14 months.

I am now back on 10mg a day just to boost it enough until this doctor discusses the problem with another one.

So now I know why I am so tired and run down all the time,

So glad you are going ok, glad you enjoyed the break, just wish it was under better circumstances for you.
There is no practice run in life.

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14 years 1 month ago #24282 by DeeDee Marie
Replied by DeeDee Marie on topic Re: 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.

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14 years 1 month ago #24292 by milly
Replied by milly on topic Re: Methotrexate Journey
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
There is no practice run in life.

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14 years 1 month ago #24308 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
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.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 4 weeks ago #24574 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
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.

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14 years 3 weeks ago #24603 by milly
Replied by milly on topic Re: Methotrexate Journey
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?
There is no practice run in life.

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14 years 3 weeks ago #24611 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
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.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 3 weeks ago #24627 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
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.

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14 years 3 weeks ago #24655 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
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?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 3 weeks ago #24674 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
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.

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14 years 3 weeks ago #24676 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
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.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 3 weeks ago #24681 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
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.

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14 years 3 weeks ago #24709 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
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.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 3 weeks ago #24744 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Thanks! Yes, I sure was able to relax while I was at home. First time I said "Ahhhh" in a vrey long time!

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13 years 11 months ago #25382 by milly
Replied by milly on topic Re: Methotrexate Journey
Hey Sandi,
How are you feeling?
There is no practice run in life.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 11 months ago #25383 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
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.

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13 years 11 months ago #25399 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
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.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 11 months ago #25433 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
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.

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13 years 11 months ago #25436 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
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.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 11 months ago #25437 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
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.

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13 years 11 months ago #25469 by milly
Replied by milly on topic Re: Methotrexate Journey
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
There is no practice run in life.

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