Lupus Support - Having Trouble with Waiting

Author

Having Trouble with Waiting

Zuska

2006-08-12, 2:25 am

Hi everyone ~

I hope no one minds if I just whine a bit here. I say that because
there is absolutely nothing anyone can do about this situation until
Tuesday at the earliest.

My primary diagnosis is Sjogren's Syndrome, and I also have Lupus. In
March, I changed to a new rheumatologist, and after extensive blood
tests I was started on Plaquenil. That was about the beginning of
April.

I was working at the time, and continued to work ~ being rather pleased
at the reduction of pain that I was experiencing. However, by the
beginning of May, I was unable to walk without using a cane. Prior to
that, I did not use any assistance with walking, so this was quite a
shock to me.

By the end of May, it became clear that I was not able to do my job.
The second half of May, I only worked 44 hours and took 40 hours of
sick time! I arranged with my employer to take time off under the FMLA
(Family Medical Leave Act). That covers me, and protects my job for 12
weeks.

My last day at work was June 9, and therefore the 12 weeks end the day
after Labor Day. That is three weeks away, and I still am not able to
walk without a walker when in the house, and I use crutches (the short
ones with the cuff around your forearm) when out of the house.

I have been to see three neurologists ... neurologist #1 thought that I
had something called CIDP, ordered an EMG with NCS (not fun!) and the
results of that showed that it was not CIDP, but maybe Multifocal Motor
Neuropathy. That lead to genetic blood tests and a referral to
Neurologist #2 ~ who said that I do not have MMN, but that I seem to be
suffering from an unknown muscle wasting disease. He referred me to
neurologist #3 and also ordered more blood tests.

Toward the end of the appointment, I told him that because I was not
working, I had lots of time to think about what was happening, pointed
out that this all seemed to start when I started the Plaquenil, and I
asked if there was any chance that these two things could be related.

His reaction was that this was an excellent question, and said that he
would talk with my rheumatologist. I went for the blood tests and went
home.

About two hours later, I got a phone call from my rheumatologist
stating that she had a 'lovely' talk with the neurologist who said that
maybe this was due to the Plaquenil, so she wanted me to stop taking
it. I agreed to do so.

Now, on to neurologist #3, who specializes in muscle wasting diseases.
After a rather thorough (and somewhat painful) examination, he
proclaimed that I did indeed have measurable loss of muscle mass, and
that it could be due to the Plaquenil, but that this was not likely. He
stated that this type of reaction is known to occur in about 1% of
people who take Plaquenil for many years, thus if the Plaquenil is the
culprit, I am an unusual case. He said that he was going to go read the
raw data from the EMG, and that most likely he would order another EMG
~ not as extensive and also a muscle biopsy to determine what was going
on. He also told me that he would do this on Thursday and call me
either Thursday or Friday to let me know what the plan was.

So, here I am after midnight on Friday ~ no phone call ~ and two
appointments on Monday, which means that even if he calls on Monday, I
won't be home to get the call! (One of the appointments on Monday is to
see if there is a resolution to the blood in my urine, which I hope is
the case ... my Creatinine has dropped from 1.4 to 1.1, so that is
good!)

I realize that apparently I am being 'special' ~ although I would
prefer to be special in some other way ~ but this waiting is making me
crazy! I accept that I will not be able to go back to work ... although
I am not happy about that. And, this past Monday I did go to Social
Security and filed for SSD. Just trying to cover all the bases.

I was wondering if anyone had a reaction to Plaquenil anywhere like
what may (or may not) have happened to me, and if there are any
suggestions about dealing with the symptoms (painful joints and
fatigue) that the Plaquenil was helping with.

Thanks for listening ~ sometimes it just helps to talk with people who
understand.

Susan

Mair

2006-08-13, 4:27 pm

Susan,

Are you on corticosteroids of any kind, such as Prednisone? It seems
logical to me that you be put on this as soon as possible, as it can act
rather miraculously if you have lupus and body-wide inflammation.

My primary diagnosis was also Sjogren's, and it was only confirmed by
biopsy. The blood antibody studies for Sjogren's were negative. If you
have not yet had it, you should have a full lupus panel, which tests for
many specific antibodies... though if you were tested for Sjogren's, it
seems to me you probably already had it. Duh. But what I was going to say
is that if you have fatigue (I mean *profound* fatigue--at one point I could
not get off the couch for 4 days), you should make sure that your
anti-thyroid antibodies are tested: antithyroglobulin and antithyroid
peroxidase, as well as a good old TSH.

I am not a doctor, and I only suggest these things so boldly because it
seems that you need to be feeling much better in so short a period of time.

A wish for your health,

Mair

"Zuska" <Snowey95@aol.com> wrote in message
news:1155365820.751805.168510@i42g2000cwa.googlegroups.com...
>
> Hi everyone ~
>
> I hope no one minds if I just whine a bit here. I say that because
> there is absolutely nothing anyone can do about this situation until
> Tuesday at the earliest.
>
> My primary diagnosis is Sjogren's Syndrome, and I also have Lupus. In
> March, I changed to a new rheumatologist, and after extensive blood
> tests I was started on Plaquenil. That was about the beginning of
> April.
>
> I was working at the time, and continued to work ~ being rather pleased
> at the reduction of pain that I was experiencing. However, by the
> beginning of May, I was unable to walk without using a cane. Prior to
> that, I did not use any assistance with walking, so this was quite a
> shock to me.
>
> By the end of May, it became clear that I was not able to do my job.
> The second half of May, I only worked 44 hours and took 40 hours of
> sick time! I arranged with my employer to take time off under the FMLA
> (Family Medical Leave Act). That covers me, and protects my job for 12
> weeks.
>
> My last day at work was June 9, and therefore the 12 weeks end the day
> after Labor Day. That is three weeks away, and I still am not able to
> walk without a walker when in the house, and I use crutches (the short
> ones with the cuff around your forearm) when out of the house.
>
> I have been to see three neurologists ... neurologist #1 thought that I
> had something called CIDP, ordered an EMG with NCS (not fun!) and the
> results of that showed that it was not CIDP, but maybe Multifocal Motor
> Neuropathy. That lead to genetic blood tests and a referral to
> Neurologist #2 ~ who said that I do not have MMN, but that I seem to be
> suffering from an unknown muscle wasting disease. He referred me to
> neurologist #3 and also ordered more blood tests.
>
> Toward the end of the appointment, I told him that because I was not
> working, I had lots of time to think about what was happening, pointed
> out that this all seemed to start when I started the Plaquenil, and I
> asked if there was any chance that these two things could be related.
>
> His reaction was that this was an excellent question, and said that he
> would talk with my rheumatologist. I went for the blood tests and went
> home.
>
> About two hours later, I got a phone call from my rheumatologist
> stating that she had a 'lovely' talk with the neurologist who said that
> maybe this was due to the Plaquenil, so she wanted me to stop taking
> it. I agreed to do so.
>
> Now, on to neurologist #3, who specializes in muscle wasting diseases.
> After a rather thorough (and somewhat painful) examination, he
> proclaimed that I did indeed have measurable loss of muscle mass, and
> that it could be due to the Plaquenil, but that this was not likely. He
> stated that this type of reaction is known to occur in about 1% of
> people who take Plaquenil for many years, thus if the Plaquenil is the
> culprit, I am an unusual case. He said that he was going to go read the
> raw data from the EMG, and that most likely he would order another EMG
> ~ not as extensive and also a muscle biopsy to determine what was going
> on. He also told me that he would do this on Thursday and call me
> either Thursday or Friday to let me know what the plan was.
>
> So, here I am after midnight on Friday ~ no phone call ~ and two
> appointments on Monday, which means that even if he calls on Monday, I
> won't be home to get the call! (One of the appointments on Monday is to
> see if there is a resolution to the blood in my urine, which I hope is
> the case ... my Creatinine has dropped from 1.4 to 1.1, so that is
> good!)
>
> I realize that apparently I am being 'special' ~ although I would
> prefer to be special in some other way ~ but this waiting is making me
> crazy! I accept that I will not be able to go back to work ... although
> I am not happy about that. And, this past Monday I did go to Social
> Security and filed for SSD. Just trying to cover all the bases.
>
> I was wondering if anyone had a reaction to Plaquenil anywhere like
> what may (or may not) have happened to me, and if there are any
> suggestions about dealing with the symptoms (painful joints and
> fatigue) that the Plaquenil was helping with.
>
> Thanks for listening ~ sometimes it just helps to talk with people who
> understand.
>
> Susan
>

Shelagh

2006-08-13, 4:27 pm

Hi Susan,=20
I am sorry for the way you seem to be feeling; it is unnecessary and =
vert treatable with anti-inflammatory meds at the very least <NSAIDs>; =20
I too am 'special/rare' when it comes to plaquenil's side effects and =
the low percentages of the chance happening of the retinal clogging and =
loss of central vision in both eyes which also is irreversible!!=20
I can no longer take the antimalarials, which btw were doing a wonderful =
job for my joints and muscle pains! So having to discontinue the drug am =
now going through hell with a lot of joint troubles as it all has rinsed =
out of my plasma by this point!
I am not allowed to take any NSAIDs due to recent cardiac involvement =
and so am stuck on my pred x5mg. daily and my pain killer breakthroughs =
when the contin doesn't hold it back;=20
BUT I also have decadron, another powerhouse of a steroid which I use =
when my pred is not enough; I find it extremely helpful and take only =
one 4mg. tablet when I need to; the beauty of decadron is there is no =
need to wean down from it afterwards as there is no crash once you =
discontinue as you take just one or maximum 2 tabs during a bad spell =
for maybe a day or 2 and/or up the pred to higher levels for a period =
of time as in 2 to 3 weeks, and then wean it down which also does the =
same thing for pain, only over a longer period of time. =20
It seems to me that you need some help for your fatigue and pain and =
perhaps in the way of taking steroids even just temporarily till this is =
all figured out for you!
IMO there is no need to have this miserable quality of life while you =
are waiting for a firm dx or decision on the next step!=20
Don't let the doc slides out from doing what they said they would =
either; chances are you have more time that s/he does for making calls =
so tomorrow that is what you should do during any spare moment you may =
have ... just call and push the next move to happen asap, in your =
favor!
Wishing you all the best of luck in ending this mess!=20
hugs, from me
Shelagh
http://clik.to/lupus

"Zuska" wrote in message:=20

<snip>

> I realize that apparently I am being 'special' ~ although I would
> prefer to be special in some other way ~ but this waiting is making me
> crazy!

> I was wondering if anyone had a reaction to Plaquenil anywhere like
> what may (or may not) have happened to me, and if there are any
> suggestions about dealing with the symptoms (painful joints and
> fatigue) that the Plaquenil was helping with.

</snip>