Biologics and docs

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Shknbk
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Date Joined Jul 2016
Total Posts : 6
   Posted 7/30/2016 4:31 PM (GMT -7)   
Hello,
I've had RA for almost two years and first time on this site. The resources and discussions are awesome and super helpful.
I've tried methotrexate and luflunomide with bad side effects, currently only taking Meloxicam. My doctor seems very reluctant to put me on any Biologics or pain meds. Dr says insurance won't pay for Biologics unless pills fail to improve condition. As I am reading more and more it seems finding the right Rheumy and right mix of meds is key.
Do I need to look for another dr? I'm already on the second try with docs.
Happy days,
Shknbk

celebrate life
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Date Joined Dec 2014
Total Posts : 2082
   Posted 7/30/2016 10:59 PM (GMT -7)   
Hello and welcome shknbk,
This IS a good place to find helpful, informative and supportive folks. Glad you're here.
It would be a pain to try to find a new doc again, but if you don't feel you are getting adequate tx, you might need to.
Can you tell us what symptoms you are having now and amount of pain. If you aren't getting adequate relief from current meds for inflammation and pain, the insurance would likely cover a biological.
Have you had a blood test to check your sedrate. If it's high, you are still having inflammation and possibly joint damage.
It might help if you arm yourself with a lot of information and then ask your doc a lot of questions. If he's not willing to discuss your future tx options, you might want to consider #3. Just my opinion.
Let us know how you are doing and again, welcome to HW.
Beth

Shknbk
New Member


Date Joined Jul 2016
Total Posts : 6
   Posted 7/31/2016 6:01 AM (GMT -7)   
Hi Beth,
Thanks for the welcome and response!
I have significant inflammation in most of my fingers, wrist, feet, toes with a pain level of 7 on days not during flare up. Flare up days it's difficult to do anything and pain level is higher. I've been told by docs I have a very high pain tolerance but that's meaningless. I travel for work and some days drive up to 6 hours which obviously increases the pain. I just received my intermittent FMLA paperwork so that will help.

My sedrate is 6, RF-124. Could this be why no need for biologigics right now?
I have three boys 12,9 and 2. My fear is not being able to have a catch with the 2 year old in 10 years. It sucks on the days I can't pick him up now from the pain.
Thanks again Beth,

Todd

Don_D
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Date Joined May 2013
Total Posts : 548
   Posted 8/1/2016 11:32 PM (GMT -7)   
Hi Shknbk, it sounds like if your pain levels and inflammation are that high then the meloxicam can't be doing very well. I know that having a lower sedrate is a factor and that they will probably say that the meds are working but you may have to insist that the pain levels and inflammation are high enough that you need an additional treatment option to remain productive and have a decent quality of life.

Are you seeing a Rheumatologist? If you aren't then you need to make this a priority. A general is not qualified to treat this disease.

Is your Doctor seeing the inflammation in your hands and feet when you go in for your regular visits? If not you need to make sure that they are seeing it. If the swelling is lessened on the day of your visit then take pictures on your phone when you have flare ups so that you can show them what you are dealing with day to day.

Most insurance companies are going to want to see that drugs like Methotrexate and Plaquenil are not working well enough before they will approve biologics due to the cost. Another option with the MTX if you were taking it in pill form is that it can be used as a once weekly shot. I do this due to my stomach not being able to tolerate it in pill form.

I hope that you find relief soon. I can tell you that with regards to kids that they will be much more understanding regarding your illness than you think. It is us as parents who have it in our heads that things have to be a certain way for our children to have a happy childhood. My experience with that has been that just spending time with them regardless of the activity will make all the difference to them and they will always remember it.

Take care, -Don

Shknbk
New Member


Date Joined Jul 2016
Total Posts : 6
   Posted 8/2/2016 3:05 AM (GMT -7)   
Hi Don,
Thank you for the response. I do have a rheumotologist, I called yesterday and my appointment got moved up from September to tomorrow to discuss treatment options. Off the leflorinal and put back on prednisone for now.
Swelling is very noticeable in fingers, wrist and feet.
My boys are very understanding and often ask how I am doing. It's not that I think they won't have a happy childhood, it's more the fear that I won't be able to enjoy! Selfish I know but it's little things like having a catch that keep me going.
I so much appreciate the comments and feedback from everyone. Thanks again!
Todd

Don_D
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Date Joined May 2013
Total Posts : 548
   Posted 8/3/2016 11:46 AM (GMT -7)   
Yeah I understand, my kids certainly have not had a real normal childhood because of my illness but who does? I certainly didn't but for other reasons. I just try to take time with them. In some ways I think it is good and can be very character building for them. Both my girls have a real sense of empathy and a gentleness for those with illnesses such as ours. I see it with their interactions with our friends from church who are also suffering.

I have had to let go of some of the things I want to do over the years because of this disease. I guess a better way to put it is that I have learned to change my thinking in regards to it. I loved to fish and hunt as a young man and now I can barely walk let alone in the forest or on slippery rocks so I still try to go I just am limited in how I approach it.

I rode motorcycles all my life until recently. I had to let go of it because it just hurts too much anymore so I have a couple scooters that I fixed up for the kids to ride and I putt around on them occasionally. It scratches an itch even if it isn't the real thing.

I hope your Rheumy puts you on something other than steroids. Mine have always approached them as a last resort rather than a go to treatment. I was on prednizone for about 1.5 years and I think that it brought on OA. I have burning and pain in my small joints of my fingers now that I never had until recently. It doesn't make much sense to me that they would not try you on biologics unless you have mitigating circumstances to consider because of infection risk.

I hope your visit goes well and you feel better. -Don

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2082
   Posted 8/3/2016 11:48 PM (GMT -7)   
Todd,
Look forward to hearing about your appointment. I hope it wet well.
Beth

Shknbk
New Member


Date Joined Jul 2016
Total Posts : 6
   Posted 8/4/2016 2:45 AM (GMT -7)   
Hi,
I had my appointment last night. Dr prescribed biologic so I'm pleased. Have to get blood work for TB and can start. I have a choice of Enbrel or Humira. Thanks again for the guidance, you all have been extremely helpful.
Heading to the shore for a long weekend.
Happy Days,

Todd

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2082
   Posted 8/5/2016 10:07 PM (GMT -7)   
Todd,
Congrats on a successful Dr visit.
You may need to check into copay assistance program depending upon your insurance. Most insurance only covers 60 per cent of very high cost. Whichever you choose, their website has info on assistance. I pay $10 per month. I started with humira because it was once every other week. It worked for five years like a miracle. When it petered out I went to Enbril. It's weekly.
Let us know what you decide and how well it works.
Beth

Shknbk
New Member


Date Joined Jul 2016
Total Posts : 6
   Posted 8/6/2016 11:00 AM (GMT -7)   
Thanks for the info Beth.
Will do and will let you know.
Enjoy your weekend!!

Todd
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