Like a wobbly, old lady at 50

[Babs659]

Well, in one year I went from being a marathon runner to a wobbly-legged old lady on the verge of needing a cane sometimes.  Just got back from 4 days in Colorado, and had a hard time keeping up just walking around the shops.  I think part of me keeps hoping I'll get "better."

How will I know when the Plaquenil has really kicked in?  It's been seven months.  Does it make you less woozy and wobbly??

[Poochie]

Babs I hate to tell you this, but you may be one of those people like me, that only finds out what Plaquenil has done through blood work.  

I can't say I ever felt the results of Plaq, but my rheumy says my blood work improved.  I've been on it for over 11 yrs.  with a 2 yr. layoff between 5 yrs. on.  That's about as clear as mud.   Sorry, I took it for 5 yrs. then was off of it for 2 yrs. then went back on it about 3 yrs. ago.  

Have you discussed your walking problem with your rheumy?  It might be that you need to see a neuro like I did.  

Hugs, from one Wobbly Gram to another,  

Pooh

[Billydude]

You might ask your doctor about a stronger drug.  My rhumy took me off Plaquenuil and put me on Cellcept.   I think however that all of  these drugs are to slow the progression not necessarily reverse the symptoms.    I've learned that I need to get rest and stay cool to feel better.    I'm had to modify my life to cope with my symptoms and the symptoms rear their ugly head less often that way.    I feel like a wobbly old man at 51.     My mom turned 80 recently and she remarked that she felt like she was 40 and takes no drugs and I told her I felt like I was 80 and take about 10 drugs.

[Epson]

I have to agree with everything Billydude said, for me, it took five months before I could say that Plaquenil was helping me and it seemed like a gradual process.  Now I can get out of bed and dressed in the morning in 15 minutes instead of an hour.  I don't think it helps with brain fog or any of the neurological symptoms, they have other pills for that.

[Babs659]

Billydude, will they give Cellcept if only my ANA was positive? 

Poochie, I am being tested for myasthenia gravis by a neuro.  So far that bloodwork is negative, too.

Epson, I go back to the rheumy in two weeks.  I have to ask him what the Plaquenil is supposed to do for me.  I haven't had much pain, mostly muscle weakness.  I used to be an avid runner, and now I really struggle.  It's like trying to move through wet concrete.  I think the prednisolone has helped with my wooziness, at least.

[tomsmom]

Babs659,
I saw my rheumatologist on Thursday.  Told her that even off the Plalquenil for over a week I still had the "woozy" and lightheaded symptoms along with the muscle weakness.  She took more bloodwork and said she'd get back to me the beginning of the week with a plan.  I can't wait.  I feel miserable.  I've never been this tired in my life.  It must be terrible for you-- having excercised all the time to have to go to feeling like this.  I was by no means an athlete but I was an active mom who loved going out.  I hate sitting around all day while my kids need so much of me.  I'm only 29 and feel like an old lady too.