Thursday, October 29, 2015

Thank You Actemra

 I just finished my third Actemra infusion Tuesday and I'm feeling great. While it's not a miracle drug, I still hurt every day, the pain, swelling and fatigue are much less. For the first time in almost a year I feel like riding again. If I would have known I would have these results, I would have switched in early summer before we went to Colorado.
I am now going to finish the suspension mods on my bike this fall (gold valve emulators and a fork brace ... maybe a steering damper also) and ride the wheels off of it. I have a long ride planned with Randall next week and I can't wait! To put it simplistically: it feels good to feel good.
 
 

8 comments:

Anonymous said...

Terry
So glad it is working for you. It is awesome when a drug hits the mark. Enjoy it and hope it leads to that remission that we all hope for. I'm rooting for ya.
Mine was good enough with the progressive springs, heavier rear shock spring and the TKC 80 tires. The one thing that really helped with the colder temps here was the Thermo-Bob (Used to run cold all the time)as far as mods go. Next week I will probably take one last ride, drain the tank and put it in the basement for the winter.
Hope you can get out some more this year.
Phil

mary said...

Glad to hear you are having good results. My doc spoke to me last week about switching to Actemra. I just can't seem to get by the infusion part of the drug. Had to stop all NSAIDS due to blood work problems. I had no idea they were tamping down the pain as much as they were. Without them the enbrel is not helping much at all.
Hope your weather holds for a boat load of good rides for you.

Terry said...

Phil, I have given upon remission but just feeling better for a few months would be wonderful! How are the TKC's wearing for you mileage wise? I am going to replace my front tire, I have a 606 in the shop now but I like the looks of both the TKC80 and the Twinduro. Where I live some winters I can ride most of the winter. Last year was an exception and I think I went almost 2 months without riding, but part of that was my RA also. It would make me sad to have to winterize my bike!

Thank you Mary. Do you just not want the infusion or is it more money out of pocket? I really don't mind them, I take my earbuds and kick back and listen to music. I try not to take NSAIDS unless the pain in really bad. I hope you find a new drug you're comfortable with that can help you quickly.

mary said...

I think it is the time it takes to do the infusion. It is just so much easier to inject at home on my own schedule. Dumb, I know but my schedule at work is so jammed all the time. I am considering it though.
No more NSAIDs for me ever. They did permanent damage to my kidneys. I have stage 3 kidney disease most likely from the meds. It could be the RA disease processes helped it along. Hoping that may improve with the cessation of the meds but so far no joy. Watch your blood work closely. You know it is funny. When I was diagnosed 30 yrs ago I made the decision to take the meds no matter what the risk. I always said quality of life not quantity. Now I guess that is coming back to haunt me. Still I wouldn't have changed a thing. I still think taking the meds is worth the risk. Now I just have to find what works without anti inflammatory drugs.

Terry said...

I understand, counting the time to get ready, drive to and from, blood work and infusion it is easily 2.5 to 3 hours out of a day. I really don't mind it though, with my work schedule I have 3 days off one week then 4 the next week. Man I hate to hear that, didn't know you were fighting kidney disease too. I ill still take quality of life, I don't want to sit around hurting and not able to do anything. Hugs and prayers, may you find the magic one that works for you.

Anonymous said...

Terry
It was nearly 70 today so I took off at noon and drove the back roads for about 60 miles, the colors are almost past, but still pretty. I only have about 400 miles on the TKC-80's so I can not speak for wear, but they seem to handle well. I have hernia surgery this month, so no more R.A meds for a bit. Tomorrow is another nice day here so maybe one last ride before it goes in the basement for the winter. Now to get the snow blower ready. Phil

Terry said...

Phil, 70 is darn near perfect! It is supposed to be 70 here the next 2 days (riding both days)and then "damaging" storms Wednesday ... don't recall damaging storms ever being in the forecast before. Guess we'll see Wednesday. I'm about 60% convinced to go with a TKC up front. Hate hearing about being off your meds for a while, best of luck buddy.

Oh ... and don't even kid about a snow blower this early! :)

Sherri Husselbaugh said...

I was on Actemra infusions until I lost my insurance {thanks Obamacare}so now I am on Actemra injections at home. They work almost as good as the infusions and much better since I don't have to drive 2 hours each way to get the infusions.
Love all of the beautiful pictures from your vacation! Have never been out that way yet. Take care.