Hi debbie. How was your check up? How are you?
Pia
Hi Pia,
I’m sorry it’s taken me awhile to answer. I’ve just been feeling really bad due to this flair I’m in. Had my check up on Monday. Me and my doctor discussed the Benlysta treatments, how many I’ve had, how long I’ve been on the drug, ect. We came to the conclusion that since I’ve been on Benlysta 11 months and have had 15 infusions with no improvement what so ever, that maybe it’s time to get off the drug. When I started on Benlysta my prednisone dosage was 10mg and today it is 30, I just dropped down from 40 this week. I’ve had to add Valium due to anxiety because of the drug and now I’m getting Solu-Medrol IV every month with the Benlysta infusion.
He had me do one more infusion of steroids today, and labs. I am having him check my potassium as you guys suggested! The next plan is maybe Rituxan, if my insurance will pay for it.
What can I say, another drug bites the dust for me…
Debbie
Sorry to hear that. I know it’s tough, but hang in there. Read my blog if you have time. You might get some ideas there. Not much but i share my experience and hope i’d be able to help others. I hope you feel better soon, debbie. I’m taking 60mg cortisol and 200mg plaquenil a day until november 29. Then i will know if my rheumy is going to taper my meds down based on my blood test results on november 27. I also take omega 3 1000mg 3x a day, jule as my antioxidant, vitamin D and cal-mag-zinc. My holistic doctor also started me with colon cleanse for 2 weeks. Please keep me posted. Stay strong! Blessings to you…
Scottieintx said:
Hi Pia,
I'm sorry it's taken me awhile to answer. I've just been feeling really bad due to this flair I'm in. Had my check up on Monday. Me and my doctor discussed the Benlysta treatments, how many I've had, how long I've been on the drug,, ect. We came to the conclusion that since I've been on Benlysta 11 months and have had 15 infusions with no improvement what so ever, that maybe it's time to get off the drug. When I started on Benlysta my prednisone dosage was 10mg and today it is 30, I just dropped down from 40 this week. I've had to add Valium due to anxiety because of the drug and now I'm getting Solu-Medrol IV every month with the Benlysta infusion.
He had me do one more infusion of steroids today, and labs. I am having him check my potassium as you guys suggested! The next plan is maybe Rituxan, if my insurance will pay for it.
What can I say, another drug bites the dust for me....
Debbie
I just became a member and my biggest complaint is my foot problems. I have so much pain some days its hard to walk around and do anything. Just saw your post and was wandering what you were told about your foot problems and if there is a particular med just for this problem. Please reply. Thanks so much
Purple Mom
Hi Purple Mom,
I’m so sorry that your feet hurt so bad. I know how you feel. Some days mine get that bad. Mine hurt whenever I’m in a Lupus flair. I’ve tried heating pads, massage, warm baths, Tiger Balm Shoulder rub and compression socks. They all help to a degree. The only medication my doctor has given me for this is prednisone for the flair and pain medication. Both help. Hope this information helps!
Debbie (scottieintx)
Hi Scottintx,
You are lucky to figure out the connection so quickly between the lupus and the sore bottom of the feet. I get that quite often and thought it was due to an old back injury. I have found that if I wrap my feet in heat wraps I can relieve some of the pain, but it is difficult to explain to others that the bottoms of your feet hurt. When I have that occur I usually have congruent low sodium and potassium as well as elevated protein. Voltaren analgesic cream (by prescription) also helps on a short term basis.
Good luck to you,
DeAnne
Hi Mia,
I have been on Benlysta a year this month. I wish I could tell you that it has been a miracle drug for me but it really has not been. It took almost 8 months to enem notice a difference and then it wasn’t much. I spend about a week getting over the side effects of the infusion, then I notice maybe a week of some increased energy, then the the drug wears off at about 19/20 days after infusion day. I do know some people that it has helped! I belong to a closed group on Facebook, not Benlysta Buddies but a smaller one and quite a few love this drug. They tell me it has help them be able to go back to work part time or help the ones who are already working. It has given them more energy. I really don’t think it slows down the flairs as much as it should. In fact, I’ve been in one for most of the time I’ve been on it. You will not have an immune system while on this drug! That is a big draw-back, especially if your feeling better! Please don’t let my experience stop you from trying it. What doesn’t work for me, might work for you.
I’m so sorry that you have not been feeling good. This disease is just aweful! Has your doctor tried you on anything like Imuran, cellcept or methotrexate? They can be taken with Benlysta.
Debbie
Hi DeAnne,
Thank you for the post and the great advice! I think I will ask my doctor about the Voltaren. I’ve hard others talk of this also.
I’m sorry your feet hurt so bad. I don’t want anyone else’s to hurt but it’s nice having people to share tips with!!
Debbie
Hi Mia,
First of all I don’t blame you!
I’m not trying to give you medical advice. I am in no way qualified to do that! But if I was you I would ask my doc about Imran, Cellcept or methotrexate. I myself am on Arava. These drugs are in a class of drugs called. DMARDS or Disease -modifying antirheumatic drugs. These worked for me for a long time before we had to add anything else. I did not do well on methotrexate but plenty of people do! The methotrexate made me sick at my stomach. I did not have any problems with Imuran, it just stopped working for me after 2 years. The Arava seems to be doing ok. I have just been on it for 2 years and for some reason everything I take stops working after 2 years.
It’s worth a shot. I say start with lower arsinal before you bring in the big guns if the smaller guns work!
Good luck and I hope you get to feeling better. It’s horrible to feel bad all the time. I know! Are you in a flair? Or is this just the way you feel everyday all the time?
Debbie
Hello Debbie,
Great imput for Mia and covering all avenues...THANK YOU
Terri xxx
Scottieintx said:
Hi Mia,
First of all I don't blame you!
I'm not trying to give you medical advice. I am in no way qualified to do that! But if I was you I would ask my doc about Imran, Cellcept or methotrexate. I myself am on Arava. These drugs are in a class of drugs called. DMARDS or Disease -modifying antirheumatic drugs. These worked for me for a long time before we had to add anything else. I did not do well on methotrexate but plenty of people do! The methotrexate made me sick at my stomach. I did not have any problems with Imuran, it just stopped working for me after 2 years. The Arava seems to be doing ok. I have just been on it for 2 years and for some reason everything I take stops working after 2 years.
It's worth a shot. I say start with lower arsinal before you bring in the big guns if the smaller guns work!
Good luck and I hope you get to feeling better. It's horrible to feel bad all the time. I know! Are you in a flair? Or is this just the way you feel everyday all the time?
Debbie
Thank you Terri, for the kind words. I hope you are doing well. Happy Holiday’s.
Hugs,
Debbie
Hello Debbie,
You pointed some good issues out...regarding doing well this lingering cold as back fired on me more and my chest is sore besides a bad cough and this morning GBH off the hubby get down the doctor's and get the flu jab MEN ah. lol
to you also Debbie :) xxx
Scottieintx said:
Thank you Terri, for the kind words. I hope you are doing well. Happy Holiday's.
Hugs,
Debbie