I saw my new rheumy Monday and she is great. She changed my lyrica to 150mg twice a day and it has made me a little loopy. She also is sending me to aqua therapy which I start next week. She even looked in my ears and wants me so see a ear nose and throat dr because of scaring on my eardrum and reacurent infection. We are waiting on labs to come back then she wants me to start Benlysta I just have so many allergies that I am worried about starting this. Has anyone had good or bad effects from this med.
My foster daughter who is in her late 20's has been on it for over a year and is doing very well. I had a rheumy that wanted to put me on it but I had so much trouble finding a place that could do the infusion. Then I went to the manufacturer (Glaxo Smith Kline, I think) and found out that I couldn't take it due to other conditions I have. The rheumy gave me their info but it wasn't thorough enough and my rheumy didn't know much either. She got mad at me for not following orders and so stopped going to her. Good luck and be sure you research it yourself. Reet
Hope Benlysta works for you! My rheumy has tried everything to try and wean me off of the steroids and Benlysta was our great hope. I didn't make it past 2 infusions without getting a major infection that made me very sick. All of the major SLE drugs have made me very sick and we are back to trying methotrexate for the 3rd time.
Hugs,
Lori
Purplebutterfly, I am so excited for you to be starting aquatic therapy. I don’t think we have anything like that near me, i live in a vey rural area though and there are not many services nearby. Definately worth looking into though. I can’t wait to hear all about it!!
I am now outside up to 225mg. 2x/day of Lyrica for almost a year now. I did not like it at all when I was first on it. Felt the same way…that it made me more loopy. That wore off fairly soon afterward and I find it to be very helpful with my fibro pain. Don’t know if I could do without it now. I hope you can find some relief with it too. I can’t take Benlysta because of contraindications. Have heard the usual…positives & negatives.
Healing hugs, ~~Maré
I have had water therapy before and it is a dream. Don't have that option now because too far from any place that offers it. Strange to live in a place called Excelsior Springs, where everyone came in the '20s to"take the waters" and not have and place for water therapy). You may feel very tired right after, so plan some rest time and maybe a ride the first couple of times.
Lyrica and I didn't work well together. No a lot of relief and I gained weight while I was on it. I took it for about 2years and then was taken off of it. Did not note much difference in pain level difference then either.
Be sure to do your research on your insurance coverage of Benlysta..it is VERY expensive. Some insurance plans consider it an "experimental" treatment and don't cover it. I tried it for 6 months, got the infusions at the Hospital, takes about 2 hours. I didn't really have any side effects but also didn't notice any changes in my Lupus one way or the other. My lab work did take a turn for the worse, so doctor and I are thinking I didn't react well to the treatment. Thank goodness my Rheumy helped with the insurance mix-up, otherwise, I would have several hundred thousand dollars in medical expenses.
You are so right on this, Daisy. One hospital I finally found that my doctor found that would do it was going to charge me $82, 000.00 per infusion!!! My doctor told them that was outrageous and according to the internet it is about $35,000.00 per.
Daisy said:
Be sure to do your research on your insurance coverage of Benlysta..it is VERY expensive. Some insurance plans consider it an "experimental" treatment and don't cover it. I tried it for 6 months, got the infusions at the Hospital, takes about 2 hours. I didn't really have any side effects but also didn't notice any changes in my Lupus one way or the other. My lab work did take a turn for the worse, so doctor and I are thinking I didn't react well to the treatment. Thank goodness my Rheumy helped with the insurance mix-up, otherwise, I would have several hundred thousand dollars in medical expenses.
Thank you for the replies. My insurance is not wanting to pay my rheumy nurse called today. They are still trying to work something out while we wait on the labs. I start the aqua therapy Monday and will let you know how it is I think the worst part for me will be wearing shorts I do not own a pair since I wear dresses and skirts all the time. My daughter who thinks she is funny is threating to take a picture and hang it in her living room. She means well and I do not know what I would do without her but their are times I think she needs a good spanking.
hope they get everything worked out with your insurance company. very glad you have a new rheumy and staff who you feel comfortable with. shorts for aqua therapy that wouldn't ride up or float away should be easy to find tight now, everyone is clearing out their summer stuff. Let us know how the aqua therapy goes!
I done Benlysta for 6 months didn't do anything for me it seemed so my doctor stopped treatment.It is very costly though good luck hope it helps you. There is a program that will help you get the medicine they will send it straight to the doctors office for free or the hospital your doing the treatment at. The program is in the leaflet the doctor gives you about the Benlysta. All you will have to do is go online and print out the paper fill it out have your doctor fill out how he wants you to have the infusion and they will send it. I am not sure how it works if you have insurance but there is a way they may be able to help you get the Benlysta. See I don't have insurance due to the fact that my husbands job closed down so no more insurance. :( So if you look at the leaflet there should be an assistants paper you could have filled out. Good luck.
| I hope this can help I found it in my inbox from when I did the treatment. | NEED HELP PAYING FOR BENLYSTA? |
| The BENLYSTA® Co-pay Assistance Program may help you. | |
 |
It's simple to apply—just ask your doctor for an enrollment form, or access one here. For more information, call 1-877-4-BENLYSTA (1-877-423-6597) and speak to a trained BENLYSTA Clinical Support Specialist. |
I’ve been on benlysta for just shy of two years and there are some real positive (my energy is up my kidneys haven’t gotten worse, etc) and some negative side effects. It’s a personal decision to weigh the pros and cons. I’m glad I chose to do it. I’m happy to discuss in depth if you want to message me.
Thank you all for your replies. My labs came back and the benlysta has been put on hold drew more labs today. My rheumy thinks my meds are affecting my liver and I still have a high white count so there is infection some where. The aqua therapy was great I will be going 3 times a week and they gave me some exercises to do at home. I am very fatigued tonight.
Sounds like you are on the right track. I'm glad the aqua therapy was good. Rest tomorrow. :)
Dear Purple: My Rheumy gave me Lyrica to try the last time I was there (I told him nothing was helping the pain). I took it once .. only once. Two pills 75 mg (sample box). It made me feel like I was out of it completely if you know what I mean. I was hungry (I am never hungry, fat yes, hungry no lol) .. Is this a normal initial response? I was afraid to take more.
when I started the lyrica I felt strange and really tired with every increase I have felt like that but my body has adjusted pretty quickly. I still have spells with foggy days but I think it is the lupus more than the med. I did have quiet a lot of weight gain which has turned into a problem since I am only 5 foot tall. I can tell a difference in my pain levels they have improved some.
Thank you, Purple .. Opposite effect on me; more pain, agitated, spacey and hungry! LOL Anyway, I talked to my PCP yesterday and she said people either love Lyrica or hate Lyrica - no in-between at all .. so it works well for you, which is good. I have so much trouble sleeping mainly due to pain, as well, so the PCP is trying me on Amitriptyline (?) - first anti-depressant ever made and it seems to be working for both my sleep and pain issues. Hoping it lasts ....