Pain still, on Leflumonide and Prednisone - normal?
Posted , 2 users are following.
Hi Everyone-
I've been on leflumonide 11 weeks and 5 mg prednisone 6 months (with several 'packs' during flares). I take diclofenac at night; was on twice a day but went to once a day two weeks ago. Wanted to see if the leflumonide was working. I also use capsaicin. (I tried metho and couldn't handle the side effects).
I'm still having pain, even though it is slightly better.
I see the rheumy in a week. Should the leflumonide be controlling the pain by now? Should I switch to something else? I hate being on the prednisone long term. I also don't want to stay on the diclofenac long term due to the stomach problems.
I'm in a small flare now, this is the 5th day. Trying to manage without doing a prednisone pack. Last night was really bad, even with the diclofenac and capsaicin.
I wanted to see what other's experiences were with the leflumonide and time frame.
Thanks everyone!
0 likes, 3 replies
slm222 jbjb93
Posted
Hi jbjb93,
I've been on Leflunomide for 2 years now (with a break for about 3 months while I went on Methotrexate and hated that drug), and I still have to take my Norco every day. I think you will see that even those who are on the biologics (Embrel, Cimzia, etc) still need to take pain medication. Some are lucky and go into remission and don't need it, but I always need it.
My new rheumatologist added Sulfasalazine to my Leflunomide about 6 months ago. It helped my inflammation levels but I still deal with being swollen, having pain and I get flare ups as well. I don't think anything out there is going to make every day pain free, but it sure helps as opposed to not being on anything.
What is your dosage of Leflunomide? I'm on 20mg (the max). I don't take prednisone because I don't want the side effects and I've had several friends who are still dealing with the ramifications of prednisone a decade later.
If you're still having a lot of pain, you should ask your rheumy to add another DMARD to the leflunmide, such as Sulfasalazine. I don't have any side effects from it, although I've read some people do.
Good luck to you. I know this all sucks. I don't know aht it's like to have a pain free day. I had a bad flare up a month ago and my thumb is STILL numb from that episode.
jbjb93 slm222
Posted
Thanks sim222 for the reply.
I'm on 20mg of Leflunomide also. Disappointing about the pain continuing, but good to know. At least I know to continue taking the Diclofenak when needed, and won't feel bad when I have to take it.
I would like to get off the prednisone, but it is hard to think about when I'm still having pain almost daily. I will discuss with the dr anyway.
I wish I could have a 'normal' day or two, normal as can be for 50. It seems my weekends are always catch up for the week. Frustrating to my husband and making life pretty blah.
slm222 jbjb93
Posted
I'm 51 and I know how you feel. Before my diagnosis, I was very active, walking/jogging half marathons and doing Pilates regularly. Now I have had to adjust my walking to all walking and making sure it's on level ground (I live in the foothills and our neighborhood is full of steep inclines that I can't do anymore) by going to our fairgrounds that is open daily for walkers. Pilates is OK on a much lighter scale because my hands cramp up with the straps when I do arm exercises. Everything had to change. I hope you can get off of the Prednisone eventually. And DO talk to your Rheumy about adding another DMARD medication. It might help. Life took an unexpected turn for us, but we have to learn to make the most of it. I wish you the best in your search for more pain-free days!