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View Full Version : Another Rheumy visit yesterday, ugh.



debbie-b
02-14-2013, 08:02 AM
Went to see my rheumy yesterday.
Some of you may remember, that I have gotten a phone call from the nurse, about a month ago, telling me to stop all the meds, because my liver enzymes were sky high and my calcium levels were to high as well.
After that I called them back and told the nurse, that something has to be done, I can't just stop taking all my meds and see how I can go on. Well the nurse said that the doc wants me to see the liver doctor, the one who said last time, that I have autoimmune hepatitis, but it is not bad enough to treat it. ????????????
Well anyway, I made an appointment, so that I can actually talk to the rheumy and not his nurse, who can't help me.
So I went yesterday, He has shown me the graphic he has, with my bloodtests, the liver enzymes are going up and down, like a rollercoaster, with or without MTX, the last one was ALT=169, AST=168, WITHOUT the MTX or any meds for 4 weeks. It was as high as 210 before.
My PTH ( Parathyroid hormone) was 210- normal= 14-72, which means I have a parathyroid tumor. It's no big deal, it's not cancer. To remove it, it's a 20 minute surgery. BUT it might take months to get into a Endocrinologist office.
So he put me on Celebrex until I can see the Endo.
I asked him if I should take Plaquanil again ( it didn't help me) but to prevent the Lupus, RA and Sjogrens to get worse. He said no, because nobody knows if it will get worse. What a dumm answer, I don't want to find out, if it does get worse.
The Celebrex scares the hell ( sorry) out of me, watching the commercial makes me twitch and now I am on it. My husband is worried.
Well that is my life, friends. I am in lots of pain.

Debbie

steve.b
02-15-2013, 12:46 AM
i can feel your frustration.

if it helps any .......
i was on celebrex for about 2 years 1 every day....
up to 3 when required.

the only reason i am not on them now is i take a stronger one.

celebrex may not be kind to the liver, if used for long periods of time
and in strong doses eg (3 a day).

hope you can sort things out.
my daughter has had her thyroids out for cancer that was wrapped around them.
the procedure is simple
1 1/2 years later.... you cannot even see the scar.
it is in a crease line on her lower neck.

jmail
02-15-2013, 03:21 PM
I used Celebrex for years, and it worked for what we were using it for. It did eventually get to my tummy. I cannot imagine going through what you are debbie-b, with having to quit the meds. Maybe eliminating the tumor will help bring things under control. Did they test your calcium with all that?

debbie-b
02-15-2013, 05:21 PM
i can feel your frustration.

if it helps any .......
i was on celebrex for about 2 years 1 every day....
up to 3 when required.

the only reason i am not on them now is i take a stronger one.

celebrex may not be kind to the liver, if used for long periods of time
and in strong doses eg (3 a day).

hope you can sort things out.
my daughter has had her thyroids out for cancer that was wrapped around them.
the procedure is simple
1 1/2 years later.... you cannot even see the scar.
it is in a crease line on her lower neck.

They know, it is not cancer, plus it is not the thyroid, it is the parathyroid, which is located on the backside of the thyroid, weird he. He said it is a simle 20 minute surgery.
I am a little worried about the Celebrex, it is giving me palpatations, after only three days.

Debbie

debbie-b
02-15-2013, 05:24 PM
I used Celebrex for years, and it worked for what we were using it for. It did eventually get to my tummy. I cannot imagine going through what you are debbie-b, with having to quit the meds. Maybe eliminating the tumor will help bring things under control. Did they test your calcium with all that?

That is what the rheumy said too, after the tumor comes out, it may take care of some of my problems. And yes, my calcium is still high, a sure sign, that there is a parathyroid tumor, which is never cancer.
I still don't know, when I can get into a endo office.

Debbie

tgal
02-16-2013, 08:24 AM
I am going to keep my fingers crossed that this will fix many of your issues. I looked into this when my daughters came back high (although ended up being no tumor) and many of the symptoms are like ours. Wouldn't it be nice if you could feel a little better?

debbie-b
02-21-2013, 02:38 PM
Got an appointment with the endo, it is not 'till april, but I told them to put me in, in case of a cancellation.
I was able to take Celebrex for a whole 3 days, that is when the my heart rythm went crazy, I had huge bruises on my legs and my liver hurt. Needless to say, I had to stop taking it.
I now have to be pretty much without any meds, until I get to see the endo. I am in so much pain, almost all my joints, my muscles, my skin, my tissue ( right under the skin) and my the tendons, all hurt, I can barely move. I am allowed to take Mobic and Flexeril, which helps very little. My pain scale today, is a 6-7.

Debbie

debbie-b
05-15-2013, 11:22 AM
Ok, I had my second endocrinologist visit today, the first one was in April, which off course he just ordered more tests.
Today he told me this, : " you do have a parathyroid tumor, the only way to fix it, is to operate, but i don't want to do that yet." WHAT????????????????
Then he said, that it would be a relative long recovery and since I am moving in 2 months, I should wait with the surgery until I get moved to Dallas. He gave me the address of a friend of his, who is also an endo and has her practice in Dallas.
I have read up on it and a few months of waiting, won't make a difference.
As soon as my husbands new insurance is in force, I will see her and have the surgery done.
My Rheumy also gave me enough meds, until I get settled in Texas.

Debbie

jmail
05-15-2013, 07:10 PM
Good luck with it debbie-b, and pay close attention to your symptoms.