[erenae1974]

I have just finished taking a shower & getting ready, which has taken everything out of me. It took all I had to do that. I am getting a bad rash on my arms, and my energy is getting zapped somehow, don't know where it's going! I went to dr. yesterday, I can't take imuran, I don't tolerate cellcept, aand I just finished 6 months of cytoxan. They said that there's not much they can do for me, so we'll keep an eye on it. Last year at this time I was in the hospital for a week because of these symptoms, it got to the point last year where I diidn't even have enough energy to eat even! I just don't want it to get there again, but don't know what to do right now to feel better! How do your flares come on & start & progress? I'm getting really tired of this disease, and I'm still only 4 years into knowingly having it!:sad:

 

[Katharine]

((((((((((((((hugs))))))))))))) Erin

I'm sorry things are so bad for you again and can well understand that you're tired of it.

I can't really help on the how flares come on etc. as I think my disease pattern is quite different from yours - it is such a varied disease. When I was iller than I am now I was simply flaring all the time (thankfully it didn't quite get to hospital stage even if it was mentioned a few times), now, I would describe the disease activity as "active" but not worsening or panic inducing. It seems to be a somewhere in the middle stable with waves of bad and less bad rather than the peaks and troughs I was getting.

I don't know what else to say. Sometimes there isn't much to say other than hope that a new treatment will give you more hope.

hugs again :grhug:

Katharine

 

[Liz V.]

Hi Erin,

I just finished 6 months of chemo myself! ...and to think I was going through it 'all by myself' this entire time...

Sounds like you're having a tough time

 

[WanePoetic]

Sorry to hear you are feeling so lousy!!

Nothing depleates my energy like bathing. That's a lie. Bubble baths are nice, but when I actually wash my hair, and comb out all the tangles, I need to go down for a nap by the time I'm finished. When I'm not feeling well, I wait until I absolutely can't wait any longer to groom.

That said, I am very thankful to still have hair! :hehe:

I'm new, so I don't know much about the drugs you've mentioned, but I certainly hope they find something that works for you!!

Best of luck,
Elizabeth

 

[debatat]

Hi, I am so sorry you are having things so tough. I can get to that state where you have no energy, sometimes I wake up and my eyes won't open and I can't lift my arms, let alone get out of bed. It can be scary. I am sorry that your treatment isn't working. Does your doc give you good support? It is hard dealing with a chronic illness. Maybe you could chat to a lupus support group in your area? I hope things pick up for you soon.

Take care

Deb x

 

[KarolH]

I was also going to suggest a support group, have you tired this?

I am sending you cyber hugs and hope you get on with feeling better soon.:wink2:

 

[Ann2]

So sorry to hear that you are going through such a bad time - as you say this illness can really wear you down. I do so hope that better times are round the corner for you - do listen to your body though and get plenty of rest when you need it.

Sending a big hug your way.

love
Annx

 

[Merle]

Hi Erin

So sorry to hear that you are feeling so bad. You should not be left to deal with all this by yourself. Perhaps your GP can provide this or put you in contact with others that can help get you through this period.

Lots of hugs - and let us know how things are going - good or bad - from time to time.

Merle

 

[Cinnia]

I'm sorry that you're tired of this disease. I feel like that sometimes and it's only going 2 years about. I also finished 6 months of cytoxan, the last one was in February. I was given it right after my first stroke. After a few months, I tried on Imuran which did not work since after starting it, my white blood cells were non-existent. The rheumy told me to stop it. After waiting for my white blood cells to go back to normal, I had a second stroke. And now just started cellcept. The rheumy says if cellcept doesn't work, there's rituximab.

But hang in there. Things will get better!

Cinnia

 

[keebler]

(((Erin)))

I am so sorry that you are feeling so bad. I can understand you saying this disease is so awful and are sick and tired of it.:hug:

Have you thought about getting a second opinion just to see if there isn't something else out there for you?

Take care of yourself and please let us know how you are doing.

Love & :grouphug2:
Lyn

 

[erenae1974]

Thank you for all your caring thoughts! I know I'm not alone. I have gotten another opinion last year I went to Mayo. They started me on methotrexate for a while, which did not work very well either, I got even more sick from that. My regular rheumy said that he feels like he's hitting a brick wall with me. This morning I feel like I literally got ran over by a snow plow. I have to take my step daughter to the orthodontist this morning and I'm just dreading it, knowing it's going to be a difficult task. I have not looked into any support groups in this area, although that is a good idea and I should! My goal this year is to make it to sept 9 without being in a hospital. That is my anniversary with my husband and we haven't celebrated one yet away from a hospital. So...hopefully!