Reducing Prednisone with Actemra
Posted , 16 users are following.
First, let me say how easy it is to reduce prednisone using Actemra instead of methotrexate. I have reduced from 20 mg to 10 in three weeks without fatigue or pain. Previously, using methotrexate and the dead slow method, it took me 6 months to reduce from 20 mg to 10. I was bumped back up from 10 to 20 because of possible GCA. My doctor wanted me to increase to 60 mg, but I just couldn't do it given the fact that it took me 6 months to get to 10 mg.
The drawbacks are that it's very expensive. My primary insurance covers most of it, but it has a $750. monthly co-pay, which fortunately my secondary insurance covers. And secondly, it is a shot. Originally, I thought this was going to be awful, but it's so easy and it doesn't hurt a bit. I do not like needles, but doing it myself gives me a sense of control which is actually quite affirming. The first one is the scariest, after that it's a breeze.
I know that reducing from 10 mg to 0 is going to be more difficult, but I'll keep you posted.
4 likes, 20 replies
EileenH cindy828
Posted
linda17563 EileenH
Posted
cindy828 linda17563
Posted
Linda,
I'm in the US and I don't know where it's available other than here. After a vessel biopsy, it was determined that I did not have GCA.
Cindy
linda17563 cindy828
Posted
Thanks for that, and good that you didn't have GCA!
EileenH linda17563
Posted
EileenH cindy828
Posted
A negative TAB doesn't mean you don't have GCA - it means only one thing: they didn't find the giant cells or any signs of inflammation IN THE SECTION OF ARTERY THEY LOOKED AT. That isn't the same as "you don't have GCA". GCA doesn't affect arteries evenly - and you can have GCA in one artery and not in another. Or even in one part of an artery but not "round the corner" so to speak.
linda17563 EileenH
Posted
Your reply to Cindy about testing for GCA, how then is a definite diagnosis made, because not everyone has raised markers, or do they if it exists.........if my question makes sense......thank you.
EileenH linda17563
Posted
There is no definitive diagnosis - UNLESS you are "lucky" enough to have a positive TAB. That is 100% certainty. Otherwise - it is a clinical decision, made on the basis of clinical history, symptoms and response to pred. Though there are supposed experts who still fall into the "negative biopsy" trap.
Michdonn cindy828
Posted
christophe38948 cindy828
Posted
Thank you for your information. I am presently on 2mg/day/month and I prying to be out of Pred. This medication created disaster in my body inside and outside. Never my doctor informed me that is possibility to decrease doses of Pred using any other medication.
It takes me much time at the end of Pred to return to my previous med condition, of course, if the PMR does not return.
Good Luck
CW
susan29426 cindy828
Posted
Thanks, Cindy, I am also taking Actemra. For me, it's in the form of monthly infusions, and I have been able to lower prednisone from 13.5mg to 7.5mg after three months. I have been decreasing 2.5 mg after each infusion, but my rheumatologist had me stay at 7.5 after the last one since my white blood count was very low. She scheduled a follow-up blood test for two weeks, and will let me know after that. Prior to the Actemra, I was unable to get below 13.5 mg predmisone, even with the dead slow method. And my inflammation markers were very high. Immediately, the inflammation decreased to the lower ends of normal ranges. I still have pain which I consider significant - it hurts to get dressed, to reach for a seat belt, to brush my hair, pet the cat, etc. etc. - and my energy is nothing like it used to be. Neither pain nor exhaustion have gotten worse though. As I understand it, Actemra is only covered as treatment for GCA, not PMR. So sympathetic rheumatologists are giving the former diagnosis (wink wink).
EileenH susan29426
Posted
It is also covered for use in rheumatoid arthritis and I do know some people who have been reassigned as RA patients. They have had to "fail" methotrexate and another DMARD first.
cindy828 susan29426
Posted
Susan,
I live in the US and using the methotrexate was considered failed because of the fatigue and pain that I was experiencing while trying to taper. I am pretty much pain free. I have a little leg pain in the evening, but it's very manageable, and my energy level is high. I can only sleep six hours a night instead of seven, but I do expect that to change as I decrease and my adrenal gland is challenged to wake up.
cindy828
Posted
Here's an update on my tapering experience on Actemra. Though I reduced from 20 mg to 10 in three weeks, it's taken me 3 months to reduce from 10 mg to 6. I travel a lot and when I do, I freeze my dose and don't try to reduce.
At 7.5 mg I began experiencing flu-like symptoms around 3:00 pm that would increase until I went to sleep. Sumatriptan eliminated the symptoms, but I didn't want to take it daily, so I increased my dosage to 8 mg and made an appointment with a rheumy. He told me that I was experiencing prednisone withdrawal and that I just had to deal with it for a few days and it would pass. He also suggested that I alternate taking my old dosage and my new dosage for a week and then take the new dosage for a week before tapering again. This worked well when I reduced from 8 mg to 7. Now I'm trying to reduce from 7 mg to 6. I experienced mild flu-like symptoms on the first day I dropped, but nothing like the drop from 8 mg to 7.5.
The tapering seems to be taking forever, but if I didn't travel so much, I'd be further along. The good thing is that I've have absolutely no PMR symptoms during my tapering process on Actemra.
linda17563 cindy828
Posted
Brilliant news, so glad for you.....hope it continues. I have PMR, so not available in UK for that. I will attempt to lower from 10mg tomorrow......have felt fairly stable at this dose, and have stayed at that for 4months.......my biggest problem is very shortness of breath, which I am going back to doctor for, and will ask to be referred, it makes me so dizzy and drained. Also have 3weeks ago been diagnosed prediabetic......don't think the two are connected. This is why I would love something else to help.....after 6years
Nice to hear your news.....good luck, keep us posted
Anhaga cindy828
Posted
This is an older thread which won't be seen by everyone. You have an interesting point to make and it would be great if you made a new post so people who get notifications about new posts see it. This post will probably only be seen by those of us who followed the original post and new people are coming onto the forum all the time, a lot of them, nowadays, with questions about Actemra.
cindy828 Anhaga
Posted
cindy828 linda17563
Posted