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Discussion Starter · #1 ·
Hi:

I saw the Rhumy today, he wants me to switch from CellCept to Enbrel. I did some research and have found several indications that it is not suggested for Lupus as it actually can cause DLE.

If I have SLE and SCLE can Enbrel make them worse?
Does anyone take Enbrel? Have you had any issues? Do you have Lupus and RA? Fibro? (I guess I want to know why Enbrel was chosen)

Thanks for all of your assistance...I have 5 weeks to decide before we change direction...in the meantime he did the test for TB and I have to have Xrays of me Knees and lungs (Knees for RA...seems possible at this time)

I am afraid of this, I like the CellCept, however I am breaking through and have had 5 mg of prendisone added to the cocktail...that helps most of the time except for elbows, knees and hands...lol

I take:
500mg CellCept 2 times a day
200mg Plaquenil 2 times a day
60mg Cymbalta
Baby Asprin (for "mild" APS) 1 time a day
5 mg Prendisone 1 time a day

50 mg Ultram 2 pills 3 times a day - Pain Management
750 mg Vicodin as needed for pain

also take for other things:
80 mg Diovan HTC - High BP
10 mg Crestor - High Cholesterol
Chantix 2 times a day - Quit smoking

Thanks - Stephanie
 

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Hi,
I have Lupus with significant arthritis and have taken Humira which is in the same class of drugs as Enbrel. They don't like prescribing Enbrel or Humira for that matter to lupus patients because it can raise anti-dsdna. My rheumy thinks it's okay for certain patients and that not a lot of research has been done on it.
 

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Hi Stephanie,

I am surprised your doctor hasn't tried raising your cellcept dose. I take Enbrel and Methotrexate plus Plaquenil as far as disease modifying medications go. I have Lupus, RA and Scleroderma basically an overlapping mess. :hehe: Here is what I have learned recently about the dsdna and Enbrel. Generally lupus patients that already have a significant dsdna are not prescribed Enbrel. For other patients many doctors are going ahead and prescribing Enbrel. My recent blood tests did come back with a low positive dsdna, which I have never had before, and my doctor told me they are seeing this in a lot of patients and it is nothing to worry about.

In patients who get a high dsdna reading and are subsequently taken off the Enbrel the dsnda reverts to negative after a few months. In very rare cases has the dsdna from Enbrel and other TNF Inhibitors actually caused any kidney damage. Some patients who get a high reading from one TNF Inhibitor have been put on a different TNF Inhibitor with no problems at all.

I am currently not doing well but the thought is that I may have heart invovlement now. My pain levels are still better than pre-Enbrel but have gotten some worse and I am having extreme fatigue issues. I only add this in case it is determined to be the Enbrel a month from now, I don't think it will be but one never knows these days.

Take care,
Karen
 

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Discussion Starter · #4 ·
Thank you both for your responses.

Karen, I really would prefer the CellCept increase...All of my bloods including DSDNA have always been negative, so I am not to worried about that.

I do have minor kidney involvement, but no damage or scarring and things are all back within normal ranges.

My biggest problems are the fatigue and progressing athralgia and tendon/ligaments tearing and thickening...I have tears in both rotator cuffs, torn flexor tendons in both elbows, thickened hip flexors...and we don't know what else yet. I have what may be RA starting in my knees and hips as well. But stil dont have a positive RF.

Thank goodness my drs don't need positive bloods to treat me...If so I would be totally lost.

I am very concerned about the Enbrel...But if I have SLE what's the diff with DLE???

Thanks again - Stephanie
 

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Stephanie,

Can you ask your doctor about increasing the cell cept dose? I know the nausea issues increase with the higher doses, at least that is my perception from what has been posted here over the years.

Only 50% of people with Rheumatoid Arthritis have a positive RF. I have damage in my hands from RA that shows on xrays but I have never had a positive RF factor.

What I left out of my first post was how wonderful the Enbrel has been for my pain. I started driving further last fall and even went out to the stores and did Xmas shopping in 1.5 -2 hour spurts. I haven't used my wheelchair since last October. So even though I am very unwell at the moment my pain levels are still lower than they were pre Enbrel. The other thing with Enbrel is within 72 hours of the first injection you can tell if it is going to work or not. It takes a few weeks to start feeling wonderful but you do notice improvement right away.

Take care,
Karen
 

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Discussion Starter · #6 ·
Karen:

Thanks so much for the information. I do feel much better about trying this after your feedback. I know its not a common route for Lupus treatment, but my Dr hasn't done me wrong, so I guess I have to trust him and give it a shot.

I am monitored very closely, so we should catch and changes fairly quickly.

Thanks again - Stephanie
 

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Discussion Starter · #7 ·
Hi:

So we hold off on the enbrel for now.

We are going to up my CellCept to 1500mg a day and try to wean me off the prendisone. I am to go down 1mg a month (I am on 5mg) so I start 4mg tomorrow.

If the extra cellcept without prendisone works then we stay there, if not, we switch to enbrel.

I feeel good about the solution for now!

Thanks for the replies!

Stephanie
 
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