Resistant to treatment

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Seashell
New Member


Date Joined Sep 2016
Total Posts : 7
   Posted 9/12/2016 3:59 PM (GMT -6)   
Hello. I am new to this site. I have severe RA that had been very resistant to treatment over the last 4 yrs. I've failed methotrexate Enbrel Humira Orencia actemra and Rituxan. I'm having to taper my prednisone due to severe avascular necrosis with multiple fractures so that's no longer an option. I am currently on arava. No other treatment right now as both blood counts and immunoglobulins are too low but even when they recover my rheum doc seems at a loss as to where to go next. Maybe imuran? I have gone to mayo clinic this summer for second opinion and they agreed with diagnosis and treatment to date but they had nothing more to offer. I am currently wheelchair bound and almost bedridden with flare in bilateral shoulders elbows wrists hands hips knees ankles and feet. Feel like I've run out of options.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 9/12/2016 6:47 PM (GMT -6)   
Hi Seashell and welcome aboard :)

I am sorry to hear that you are having such a rough go of things. I have had a similar path the last 3 years after responding well to Enbrel for several years I have failed several biologics. MTX works a little but also comes with its own set of problems like most of the biologics I have been on. I have spent a lot of time online reading about treatment options but unfortunately there just doesn't seem to be much else available right now. I was hopeful that gene therapy would offer some promise but it seems that it is not something that will be available in the near future according to the articles I have read. Have you asked your Doctor about any upcoming trials that show promise or they would be comfortable with you trying?

I am sorry to hear that you are in ongoing pain and that your quality of life has been affected so severely :( It is not easy sitting at home in pain I know. I hope that something becomes available that will offer you relief. -Don

Seashell
New Member


Date Joined Sep 2016
Total Posts : 7
   Posted 9/12/2016 8:08 PM (GMT -6)   
Thank you for your response. I too have researched online but haven't found any new treatment options. My rheum doc only has a biosimilar study going on which doesn't apply for me.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2016 10:38 PM (GMT -6)   
I hope they can come out with something to cure us.

I'm a hot mess when it comes to medications. I'm allergic to so many that I'm scared to start something new. I've already learned that MTX is a no-no for me and predisone sends my blood sugar through the roof.

I hope you can find some relief from your flare soon.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Seashell
New Member


Date Joined Sep 2016
Total Posts : 7
   Posted 9/13/2016 7:04 AM (GMT -6)   
Thanks- I'm sorry you're going through such a rough time too. For 4 yrs I've had such a positive attitude through all of this. In 12/24 I had a respiratory arrest and was in a coma for a month and woke up completely paralyzed from critical illness myopathy and spent 7 months in a hospital battling one life threatening complication after another and yet I pushed always forward and fought for rehab to get better and stronger and just as I was finally able to walk a few steps again the RA flared badly and threw me right back in a wheelchair which is where I've been now for the last year. I've failed all other treatments and there's nothing else out there right now for me to try. I am a strong person but how does one continue on when all you have is lying in bed in pain all day long in pain by yourself. Before this all happened to me I was such a healthy active person.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/13/2016 7:34 PM (GMT -6)   
You need a companion. A person or a pet would do.

I find my pains ease when I'm distracted by my cat or a family member.

A sweet kitty is great to cuddle with and is a great comfort.

There is even trained dogs who can get things for you.

It something to think on.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9657
   Posted 9/14/2016 8:14 AM (GMT -6)   
I agree with Couchtater, getting on a list for a therapy or companion or even Service animal might benefit you and the animal. A Service dog can go anywhere the companion and therapy pets cannot, so if your doctor can help you then try for a service dog, a service dog can help you with some chores, too.
Google Service dogs and who qualifies...

Also, ask your doctor about antibotic therapy, if your not allergic to eyrthromycins (antibotic) it's what they used to use for RA, might be something to consider.

Keep hope, there is always something new coming out...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Seashell
New Member


Date Joined Sep 2016
Total Posts : 7
   Posted 9/14/2016 10:20 AM (GMT -6)   
Thanks for the responses. Before RA hit I was a volunteer with a therapy dog so I do have him home with me. Not a service dog but some company. It's more human companionship I'm looking for. I'm naturally a social person but so many friends turned out not to be good friends and haven't been there for me during this long protracted illness. They don't seem to understand why I haven't gotten better by now. It gets old explaining that nothing works. I live with my husband but he works long hours. Hoping to find some online connection.
Regarding the antibiotics suggestion I am allergic to erythromycin and almost all antibiotics unfortunately

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 9/14/2016 12:05 PM (GMT -6)   
Hello and Welcome Seashell: :)

Goodness, you certainly have had more than your share of conditions/diseases/ailments.
So sorry to hear of what you have been experiencing.

I've had severe RA for 34 years. Only a few medications have worked for me since I am resistant(refractory) to the rest, including all the biologics, as you are. Methotrexate, Indomethacin, Myochrysine, Vioxx, Imuran, Prednisone, have all helped to put me into remissions which was great, of course. Imuran was actually the last one that worked for me
until a few months after my brother died in 2005. I was in remission for about 5 years
with Imuran.

I've been on Xeljanz since mid April which works about 70% for me. I'll take it. Mind you I am also on Morphine which helps also, a lot better than the Tramadol used to.

Before the Xeljanz and Morphine, I suffered the past 10 years while on Prednisone, Indomethacin, Tramadol, Methotrexate and various biologics.

I will continue trying new meds for RA. I hope you will too, Seashell. There is always a chance of hope and finding a drug that works for us. There are more RA medications
coming done the pipeline. I'm praying that you will be getting out of that wheelchair
and walking, as you used to. Keep us updated please and enjoy your day as best you can. :)
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 9/14/2016 12:09:34 PM (GMT-6)


Seashell
New Member


Date Joined Sep 2016
Total Posts : 7
   Posted 9/15/2016 7:13 AM (GMT -6)   
Thanks msouchie. That's a long time that you have dealt with this disease. I'm glad you get some relief from xeljanz now. I'm not sure what they will suggest to go to for me once my labs improve. Trying to be patient

Seashell
New Member


Date Joined Sep 2016
Total Posts : 7
   Posted 9/16/2016 3:52 PM (GMT -6)   
Follow up with rheumy shows my white blood cells have dropped even lower. Now done to 2,500 total white count and absolute neutrophils are 1,200. Don't know why. Since forteo only new drug will hold that and recheck in 2 wks. Could be due to other meds I'm on such as arava and sulfa. Could be lingering effects from prior Rituxan or actemra. All these drugs are so toxic. It would be worth it if something would ever work but that's not been the case for me. Yes I'll keep trying. We are looking at imuran if and when my counts come back up. If not improving then I'm off to see a heme doc. Never ending saga

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 9/22/2016 1:16 AM (GMT -6)   
Sorry that I didn't see your post Seashell. I've been away. I feel bad that your WBC and Neutrophils are off. Some of my test results are too high or too low sometimes but usually they fall back into the norm on the next testing. Hopefully, they will find out what is causing yours to be out of range. Praying that you are back in range next time around, so that you can start on something new that will make you feel better.

You are doing very well. I know it's difficult to be patient sometimes. I must confess when I'm by myself, I do say a few "choice" words to RA or have a cry and then say a prayer. We just all want RA, to go away.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC
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