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Methotrexate Journey

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13 years 9 months ago #21064 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
Sandy,
Your lupus symptoms seem to correlate with your busy work schedule. Your body must need more rest. Is there anyway that you can slow down so that you can rest more? I know it is easier to say then do--but you are important and deserve to rest.
  • 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 9 months ago #21068 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Ha fat chance. As I was saying "I can't do all of this" I was getting more files piled on.
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13 years 9 months ago #21069 by milly
Replied by milly on topic Re: Methotrexate Journey
I hope the shots help. I have seen articles that say they work better then the pills and have less side effects it will be interesting to see what you think.
The work thing is a hard one, we have to work but I agree that the tiredness does impact how we feel, it is hard to find that balance though.
Let us know how you go with the side effects, my next task is to find a new Rheumatologist as my previous one has gone, it will be interesting to go to a new one and good to get a fresh set of eyes and a second opinion.
There is no practice run in life.
  • 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 9 months ago #21075 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Side effects are horrible. But - I didn't take folic acid or Leukovorin, so those might have helped. It's been a pretty rough day.
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13 years 9 months ago #21078 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
Sandy, I wish you could get a break from all this. I also wish you could build a case and sue your company for harrasment. They know you are not well and they keep pushing you. My friend, Yolanda, who has RA, works as a legal assistant at a law firm for worker's comp. She's been there for about 27 years. They always treat her very well. But, if they don't keep treating her well--she plans on filing a worker's comp case (she know just what to do and how to file it herself). She also has a mild case of COPD and doesn't always feel too well. Your work is aggrevating your lupus and this doesn't seem right.
  • 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 9 months ago #21079 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Dee Dee - I've just always felt that if I couldn't keep up with the job, I should quit and allow them to hire someone who can. The problem is that I need the health insurance, so that isn't an option. If I quit, I couldn't afford COBRA.

Another problem is that I don't really tell anyone what is going on. So naturally, they assume that everything is fine. I've really earned witch status the past few weeks, so the consensus is that I'm just mean. I guess that's how I come off since I'm so cranky. I always told myself that I'd never use Lupus as an excuse. If I don't do my job, it just puts more work on the others which would possibly cause resentment. I can't win in this situation.
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13 years 9 months ago #21110 by milly
Replied by milly on topic Re: Methotrexate Journey
Sandi,
Are you feeling any better?
There is no practice run in life.
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13 years 9 months ago #21111 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
Sandy--I know it seems like you can't win--but you are doing the best you can given the situation. And, it is better not to tell too many people at work (I've been in that situation before,too). Just don't be too hard on yourself--because always remember that you are doing the best job possible given your circumstances.

And, as Milly asked--are you feeling any better? We are concerned about you.
  • 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 9 months ago #21119 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
I took 1/2 day off today. Big step for Miss Workaholic. We only have 6 people in our office so it's kind of hard not to tell what's going on. I've been there for 15 years and they have been there even longer, so we know each other pretty well.

I still feel like crap and can't eat much, but I'm hoping if I take the Leucovorin next time it will make a difference. I have the next two Mondays off, so for now, one day at a time.
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13 years 9 months ago #21332 by milly
Replied by milly on topic Re: Methotrexate Journey
How did you go? Did you manage the shot by yourself?
There is no practice run in life.
  • 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 9 months ago #21338 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Yup, I did it. It was an hour ago and I'm still alive so I guess I did it right. I Youtubed it and found instructions which made it much easier.
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13 years 8 months ago #21366 by milly
Replied by milly on topic Re: Methotrexate Journey
Youtube, where would we be without it, are the side effects less this time? I have been thinking about this and wondered if you are having the effects because you where off it for a while.
Sandi, I just have a quick question, my platelet counts have been really good since being on Methotrexate is it possible that the methotrexate could be helping with this. I know it can lower platelets but it seems to be the reverse.
There is no practice run in life.
  • 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 8 months ago #21371 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Milly - the only side effect I have today is feeling like I have the worst hangover in the world. Slooooow Moooootion. I have half the brain capacity I had yesterday.

I don't know the answer to the platelet question. Anything I say would be speculation. With ITP, anything is possible.
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13 years 8 months ago #22099 by milly
Replied by milly on topic Re: Methotrexate Journey
Hey Sandi, how are you going? I asked the doctor about the platelet question and he said he thought that the methotrexate was keeping platelets up.
There is no practice run in life.
  • 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 8 months ago #22106 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
I've been having a lot of problems with this drug. Too hard to function and think clearly. Two weeks ago, I lowered the dose and spoke to my doctor a few days later. She didn't want me to lower it; she wanted me to split it - half Friday and half Saturday. I tried that and it was no better. I think I'm going to quit taking it. I can't do this any more. I start driving and forget where I'm going...functioning at work is getting to be a challenge. I'm lucky I'm fooling everyone. Everyone but me.
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13 years 8 months ago #22107 by milly
Replied by milly on topic Re: Methotrexate Journey
Yeah me too, I had to talk to our local council the other day as someone has stole our street sign and the guy I was talking to ask me the name of my street and for the life of me I couldn't remember the name of the street I lived in and that's only one example, going to see a new rhuemy in March
There is no practice run in life.
  • 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 8 months ago #22168 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Are you quitting? I didn't do it this weekend.
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13 years 8 months ago #22180 by milly
Replied by milly on topic Re: Methotrexate Journey
Still on it at the moment, but my doctor wants me to try something else. I have an appointment with a new rhuemy in March.
I went to see my GP and he is not happy with the skin thing and the memory problems also my cholesterol has been increasing since I have been on it (no change in diet). I am going to see if I can just have a break from any treatment for a while after I go in March just to see what happens (see what the rhumey thinks) I am really happy to get a second opinion.
There is no practice run in life.
  • 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 8 months ago #22191 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
oooo I don't know if you can do a break from all treatments! What else do you take?

I'm having some skin things too. Weird red spots on my arms.
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13 years 8 months ago #22202 by milly
Replied by milly on topic Re: Methotrexate Journey
Probably not as I dont take anything else, I do take thyroxine for thyroid but nothing for RA. I am just over these meds and I suppose this was just wishful thinking. I just want a life back.
There is no practice run in life.
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13 years 8 months ago #22204 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
Milly, I have a friend who went off a lot of her RA meds. She just takes something "mild", watches what she eats, and does get a lot of rest (she is 64 and is till working). Some of the meds were causing her to get lung infections and she has become more concerned about these. Just be careful.
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13 years 7 months ago #22223 by milly
Replied by milly on topic Re: Methotrexate Journey
Yeah DeeDee, I have been really thinking about all of this but I have decided just to wait until I go to new Doctor and see what he thinks, I will stay on the methotrexate until then just so I can function at work.

I also know other people that have RA and they don't take meds all the time either.
There is no practice run in life.
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13 years 7 months ago #22227 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
Milly, that sounds like a good plan. Just take it slow--and see what the new Doctor has to say.
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13 years 7 months ago #22448 by milly
Replied by milly on topic Re: Methotrexate Journey
Latest update, I started the week off with a bit of a flu and went down hill from there. After two days I was just feeling worse so I went to the doctor and I have an chest infection, so I am on a course of antibiotics for that.
Got the results of last bloods while I was there, inflamation markers are slowing going down (don't really understand this, no-one has mentioned this before and I was unaware the they were high) liver enzymes are high, but not too bad and platelets are in the 150 range.
I can't believe how quick I felt so bad usually I get a flu and get over really quickly, no treatment needed and this one has me off work for a week.
There is no practice run in life.
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13 years 7 months ago #22465 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
Milly, it seems strange--but for some reason, once we had these illnesses (ITP and others), it really seems like you can get run-down really fast. This is what I find so with myself. I am glat that your platelets are up! That is really good. Get some rest and make sure you take care of yourelf.

Hope you feel better real soon.
  • 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 7 months ago #22689 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
I am not getting over these side effects. It's getting scary.
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13 years 7 months ago #22690 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
Sandy, did you stop taking the Methotrexate? I thought you started on another med?
  • 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 7 months ago #22691 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Yes, I stopped MTX and no, I didn't start another med.
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13 years 7 months ago #22696 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Methotrexate Journey
Have you talked to your doctor to see what else you can take? You could be overstressed from your work--and this can make your symptoms worse. Are you still getting the rash and fatigue?
  • 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 7 months ago #22698 by Sandi
Replied by Sandi on topic Re: Methotrexate Journey
Dee Dee - I have so many things going on right now that I don't even know where to start. I do need to call the Rheumatologist and every day I tell myself I'm going to call, but don't. I'll do it tomorrow. I've had to leave work four times in the past two weeks for appointments and tests. I'm wearing out the generosity of my boss.
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