My rheumatologist told me I could not have Benlysta because my complements are not low and my sed rate is not high and those are the criteria to get me admitted to the hospital for the infusions. He said I had to have active lupus. UM EXCUSE ME...... my ANA is sky high, the myelin on my cranial nerves are being destroyed and my facial muscles and nerves are in a terrible state and cause me unbelievable pain. I have severe ACTIVE peripheral neuropathy, livedo reticularis, anemia, reynaulds, mouth and nose sores right now and all the time, virus after virus after virus after virus. I'm presently on prednisone (and not for NOT having active lupus)....I'm running low grade fevers, recently had a flare where I had malaise, muscle weakness and lost 19 pounds in 5 weeks. My rashes and vasculitis are highly active, malar and lesions and discoid.
My kidneys are in REMISSION and I feel like I have a small window of opportunity here for Benlysta. So I found a new rheumie, I go Aug 22nd and he does infusions in office. I'm scared to change but even more scared not to.
AND I WANT BENLYSTA! I want more aggressive treatment!!!!! I take plaquenil and meloxicam and prednisone during flares or miniflares for lupus. No biologicals, no dmards ever.
Good luck with your new rehumy, and I beleive that u can take benlysta if you havent taken any biologicols like Rituxan… My dr say my next step will b benlysta but im doing so good with Ritucan he want me to keep it like that…my dr also do infusion in the.office and I love it…i feel more secure…so I wish you the best and I hope you get better…love Dunnia…
This is such a frustrating disease I wish you luck with your new rheumy Many of us are in the same boat- negative labs but continuing symptoms. There are other drugs besides Benlysta that may help also like Cellcept, Immuran etc- you might want to check them out as well. Plaquenil by the way IS a Dmard- how long have you been on it? Bad news about Benlysta is that it only helps a certain percentage of people and may take several infusions to do so. The people it seems to help most consistently are those that are 'seropositive' which means things like a positive anti-smith etc Good news is that they are testing new drugs which have a broader window so hopefully better drugs are on the horizon!!!!
I do think it's right because your system is so active everythings going on at the moment and it sounds to me like your in a combined flare anyway and if they stretch to 6wks or more then you need stronger stuff anyway.
Some doctor's are off their heads and the new one you've got to see may take you alot serious...after being on plaquenil and coming off it i thought my ANA would be low or negative but when the dermo re-tested my blood before i started the Dapsone they was still through the roof in high reading.
I'm like you wanting stronger meds and the Dapsone's not kicked in yet so come the 19th of this month who ever i see, i'll tell them the level needs rising.
Julie you stand up for what you believe in regarding relief. xxx
I understand that you want more aggressive treatment. I made myself homeless for just that reason. But there other drugs u can try first. I am on melboxicam, plaquinel, imuran, prednisone, acupril, ametriptolin, and flexaril. And all of my blood values are still through the roof. This is why I got into a new drug study at duke. I have posted about them. This damn lupus puts everyone on the edge of what a human being can take. But plz do be careful to go to aggressive treatment like this. Benlysta also has a lot of side affects and as stated befor, requires certain blood values to be there. Just because a doctor is more willing to do what you want doesn’t mean they are better doctors. Benlysta is a VERY exspencive drug. So your doctor might be getting payed to give it to ppl. Some doctors are like that. Not saying yours is, but do be careful with a doctor that is so willing to give u a treatment this fast after seeing you. My doctor has seen me several times and has done lots of blood work before she has me screened for the drug study.
This is just exsactly the reason why I am doing this drug study. I want to help as much as I can for the doctors and pharm company’s to find better drugs. A lot of my friends back in MS and on here have warned me because the are scared for me. But if the doctors dint have labrats to test new drugs in how can they ever find new and better drugs, or better yet a cure. I am starting Wednesday. I am scared and worried, but I just gave to do my part. I have felt this way ever since I have found out that there are not many options drug wise for lupus. I prayed and prayed and then prayed some more to be able to help, and now it is 4 days until I start. Thank you god!!!
poobie said:
This is such a frustrating disease I wish you luck with your new rheumy Many of us are in the same boat- negative labs but continuing symptoms. There are other drugs besides Benlysta that may help also like Cellcept, Immuran etc- you might want to check them out as well. Plaquenil by the way IS a Dmard- how long have you been on it? Bad news about Benlysta is that it only helps a certain percentage of people and may take several infusions to do so. The people it seems to help most consistently are those that are ‘seropositive’ which means things like a positive anti-smith etc Good news is that they are testing new drugs which have a broader window so hopefully better drugs are on the horizon!!!
With your readings it does seem funny though the way he's been acting and my dermo always says if you can get just plaquenil working with methorexate then your on well combined drugs...so i asked my rheumo and he refused saying it can cause liver damge etc...if other's want to do it let them.
That Dapsone i've been put on is for DLE/SLE and RA your bloods need monitoring the sme because of organ damage but when it comes to it with what we have to put up with...what much is it extra i say. xxx
Dapsone came out in the 1930's by injection it was the first thing for leprosy and is now treated for HIV/Cancer and now Lupus.
Leisons do disclour the skin and scar besides i have them on my neck....it's actually your Dermo you want to ask about the Dapsone it's classed as a last resort on patients and it's a sulpha drug but it matched my DNA for taking.
Yes i have re-occurances identical in flares but if i get stressed or aggitated with it, it seems to get worse but my dermo as prescribed steriod clear plasters for my skin anything that breal out i apply the blaster and it burns it out you can't feel it but within 2 days it shifts the flares besides here's the name for the platers
"Betesil 2.25mg plaster -Betamethasone valerate" i was on a lower dose but these are the highest.
I will not touch prednisone although they wanted me to have it through the past with them and brain damaging me...i know they're different steriods but i always said never again and my dermo works with me on drugs that are not steriods...you'd love him if you met him he's ace with DLE/SLE.
Julie here's a link in which my dermo uses and prints off but i'll see for another about Dapsone and add it to your profile.
Plz don’t think I am saying u should not get the treatment u want and need. I just want u to be in safe hands. I have had messed up doctors neglect my health and put me in serious harm to the point I thought about sewing her. And believe me I’m not for ppl sewing doctors…
Aww your so sweet. I am at the clinic now getting ready to have my first treatment done! The death of girl C reminded me why I am doing this!!! I’m sorry to hear you have been turned down. I don’t eventide down. Sadly they are only looking for positive blood work, so they have blood work to show how well the drug is or isn’t working!
jujubeee said:
Sunshine, I think a drug study is a perfect idea for you and for me, and it is a necessity for new medicines. I have tried to volunteer but been denied over and over. I’m very happy and of course, nervous, for you doing it. There is always that risk.
I won’t go broke getting treatment. I am tired of being put on HIGH DOSES OF PREDNISONE instead of doctors using other alternatives for controlling my lupus for reasons I don’t understand.
That’s my main beeeyatch on the subject, lol.
I appreciate your opinion and I respect your choices and happen to think it’s a good one. LOVE Julie
Aww your so sweet. I am at the clinic now getting ready to have my first treatment done! The death of girl C reminded me why I am doing this!!! I’m sorry to hear you have been turned down. I don’t eventide down. Sadly they are only looking for positive blood work, so they have blood work to show how well the drug is or isn’t working!
jujubeee said:
Sunshine, I think a drug study is a perfect idea for you and for me, and it is a necessity for new medicines. I have tried to volunteer but been denied over and over. I’m very happy and of course, nervous, for you doing it. There is always that risk.
I won’t go broke getting treatment. I am tired of being put on HIGH DOSES OF PREDNISONE instead of doctors using other alternatives for controlling my lupus for reasons I don’t understand.
That’s my main beeeyatch on the subject, lol.
I appreciate your opinion and I respect your choices and happen to think it’s a good one. LOVE Julie
I understand, I was just recently apporved for Benlysta. I am both exceited and scared to recieve it. It is very hard to be approved, because it only works for a very small percent of people like 30% I think. They also told me that it can have some life treatening side affects that they can not always reverse. I was contacted by a lady with Benlysta, they made me fill out papers stating I was aware of this before they would even ask my insurance to cover it. It is going to be a very expensive co-pay, in the thousands of dollars. I wish you the best with your journey. I just prayed god's will. I told myself if I am meant to have it I will get approved & if not maybe it would have hurt me more. I wish you the bestin finding the right treatment.