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Zuska2 posted:
Hi all ~

I am new to this group. Not new to Lupus, but apparently things are going from not so bad to worse. As I tell people, my warrenty seems to have expired!

I was diagnosed about 8 years ago. I have been taking Plaquanil for about 7 years. I did have to pause it for some time because of problems with my eyes, but turned out to be unrelated.

Now, however I am faced with making a decision about Methotrexate. In the past month I began to have quite serious pain in my wrists and x-rays showed that is it not carpal tunnel but instead related to Lupus. I took Predisone for 7 days .. it got better, then I was off the Prednisone and it got worse again, so now I am back on 5 mg Predisone. Since I am already taking 400 mg Plaquanil I was told it is time to consider 'plan B.'

I am interested in hearing the experiences of others .. and also hope to be an active help to others as well.

Susan aka Zuska
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Margareth8537 responded:
Hello Susan
I take Plaquanil and am on Prednisolone. Normally 5mg but can up it to 10 for a few days if I have a flare.
My Mum was on Prednisolone for about 15 years. Doctor kept trying to get her off it, but she said she would take her chances as it controlled her pain and she had to die from something - she died at 87!
Prednisolone is a nuisance in that once on it you have to stay on - as soon as you stop you lose any benefit and you have to come off it slow
My husband was put on Methotrexate for Psoriatic Arthritis and had fairly dire side effects so had to come off, but another friend has it for Rheumatoid Arthritis and copes very well with it. It does take some time before it works, so you have to prepare for that.
And these are all just helping the pain - there is still the fatigue and depression to cope with!!

Margaret
 
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renalupie1 responded:
I was very scared of taking the methotrexate. But I took it for several years, and it helped tremendously. I went in to remission in the summer of 2008. Recently started having some symptoms again, and my doc put me back on plaquenil. I will not hesitate to go back on the metho if I need it though.

it was hard at first, as I had to go to the bathroom alot with the scoots. but eventually my body got adjusted and I did fine.

Rena
 
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K2isKsquared responded:
Methotrexate gave me back my life. I was on 400 mg Plaquinel and I consulted with a second Rheumy who said I was not only Lupus but also RA and we should add the Mtx (Methotrexate) to the party.

My knees were huge and painful, and my wrists were severely carpal tunnel -- not from repetitive motion but from the swelling of my arthritis pressing on that carpal tunnel nerve. My wrists were locked in a bent, forward position. Even wearing wrists splints 24/7 at the advice of my Rheumy could not combat the pain and deformity.

So I filledl the script and read the side effects and it's like -- ARE YOU KIDDING ME?! -- the stuff reads like toxic waste. But you have to remember this is a chemotherapy med, and the doses used for cancer patients are much higher than those used for Lupies. Most of that nasty stuff isn't going to happen to you.

You can expect to be sick the day of and the day after your weekly Mtx. It was kind of like an alien took over my intestines -- a loud, raucous, volcanic alien -- but what I got in return was nothing short of amazing. My knees were no longer the size of a baby's head. My wrists were able to bend a bit and function. Brushing my own teeth was a luxury I once again enjoyed.

This med was a HUGE help to me and improved my quality of life immensely. I can only encourage you to give "plan B" a test drive, and see if it helps you, too.

K2
 
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Zuska2 responded:
First ~ I want to thank you all for th responses. I am about 99% certain that I will try this. I am to have blood work to check for Hepatitis and also since I have chronic kidney disease the dose will be modified.

I basically have this 'bad' habit of panicing everything something else go wrong .. I tell people that my warranty wore out about 10 years ago!

The 5 mg Predisone is helping again, as is the arm support that I wear at night.

Who knows .. if this goes well I may be able to go back to doing counted cross stitch!

Again ~ thanks!

Susan aka Zuska
 
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nancyj95 responded:
I wouldn't hit the methotrexate just yet (if it were me). I tried prednisone originally and found it not very effective for me. My rheumy changed me to Medrol in addition to sulfasalazine (tried plaquanil but I am allergic to quinine). When things got bad for me he added Cell Cept which has been a trmendous help. At the moment Medrol is not available so I'm back on Prednisone and miserable. Hopefully it will again be available in July. I had been diagnosed with carpal tunnel before I got the Lupus diagnosis-once I was on the Medrol, I really improved and didn't need the braces all the time. Talk to your rheumy about other options-I can't do any of the "chemo" type drugs as I have autoimmune hepatitis. I wish you luck!


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