Feeling blch

[Deborah T]

Hi fellow Weggies -
I have been off on temporary disability since Feb and am anticipating going back to work Wed, April 2. I did however teach a class last Tues and last Thurs and was absolutely exhausted the following days, almost felt drugged. My lab results are just in and show my Myeloperoxidase level is still crazy high at 76, and P-ANCA is still markedly positive at 1:1280. I completed the RTX a month ago and was hopeful my levels would have been way better than they are. I am slowly decreasing my Prednisone and am down to 15mg / day.

Have other Weggies had issues with severe fatigue after a day of normal activity? Is it common for high levels one month past RTX? Any advice?

Thank you friends -
Blessings -
Deborah

[Dirty Don]

Most applications of rtx/mtx and some other drugs we use are closer to 5-6 weeks to take full effect. Be patient, start to worry after a couple of months if nothing is happening...keep talking to your docs. Not sure you want to decrease your pred until you know the rtx is doing it's job as the pred reduces the inflammations which helps but will not drop your numbers. Fatigue is still a problem for me, but it has improved in recent months (2 1/2 years from dx) to the point that I usually crash after a couple of days of activity, but not for long and am back at it in a day or so. I'm also very moody, naturally! LMAO!

[Wegetarian]

I'm also working part time. Was thinking of doing 100%, but a nurse, a social worked and a doc told me not too when I was on this course for vasculites.

I did try how it would feel to work full time, ie.. on Monday and Tuesday I was at the office until 5pm and was completely exhausted in the afternoon. Felt my eyseight got worse too (seems to happen when I'm tired). So yeah, I'd also say its not too uncommon to be easily exhausted.

I hope its just temporary and that it gets better as I've felt better each month. I did read that 50% of weggies don't return to their work (either at all or will have to have to change their work load).

[annekat]

I don't have a "regular job", but am self-employed making pottery and can take breaks whenever I want, and my Wegs is fairly well stabilized, though I'm not in remission, probably. I get SS Disability but it isn't enough to live on so still must carry on at my pottery making and selling. In any case, yes, I still get totally exhausted after long periods of moderate activity or after interacting with people for several hours. Then, I really need some down time. I don't think it means my meds aren't working, I just think it is a part of having Wegs. But I think it is true that the fatigue will be more pronounced for awhile after starting an immunosuppressive med. I certainly noticed this with CTX, and again with MTX, although I wasn't as sick by then so did better. I take lots of naps when I get the chance. Even short ones can help a lot.

[Alysia]

Hi Deb.
yes. being tired is part of being a weggie
I also was extremly tired 2-3 weeks or maybe more after getting the rtx.
I gradually change my way of life, taking it more easy, taking less work on me, otherwise I become more sick.
still there are days that I am going to sleep at about 20:00 (08:00 in the evening) and if my cats don't wake me up, I can sleep even 10 hours. and then be tired few hours later again
just listen to your body and don't overdo.

[renidrag]

I am in remission and drug free Deb, and fatigue is still with me. I, like Alysia can sleep for ten hours, wake up and I can sleep for another two. Yesterday we spent two hours at Deb's sons new house, slept for four hours upon getting home. As DD would say sheeesh. Can you go to long term disability?
Dale

[Deborah T]

I'm prim bread-winner. Spouse semi-retired with no benefits. I'm afraid of losing my health care benefits. Will graduate from Master's program in 6 weeks. I just have to hold on until then. Am currently looking for work-from-home job. Then I can nap if needed. Life .... jeesh... I keep praying it will get better. But, I have to live up to reality. I'm not 20 any more and I'm not healthy but I am hopeful.

Blessings -
Deborah

[Dirty Don]

Hope springs eternal, but reality demands NOW...best to you!

[Alysia]

or a weggie.....

[lag713]

I can relate to feeling blch. My disease activity is fairly mild (nasal and constitutional symptoms only) compared to some of the other weggies on this forum but I also experience fatigue. I'm 26 and on 25 mg of methotrexate once a week. I'm in a PhD program so the workload is pretty high so I worked with my advisor to reduce my coursework and my research work this semester. I have the luxury of working from home 2 days a week and only going in for a half day for 2. I take naps almost everyday. I end up completely exhausted any day that I don't take a nap and spend the next day sleeping excessively to re-cooperate.

I probably look fine to everyone I work with. I try to blend in whenever possible. I don't want them to think of me differently yet I wish they could understand what a challenge it can be to do simple things. I would probably seem like I am in good health but I lag behind compared to my peers.

In this mystical place of remission that everyone keeps talking about, is anyone "back to normal"? I would really like that!