Hi! Terrified of taking Enbrel...how is anyone else coping with it?

Hi there.

I wasn't expecting to hear from an old post! Been on enbrel for 2yrs and 5 months now. Apart from repeated sinus problems I've been OK in terms of side effects. Unfortunately enbrel was given to me too late as the damage had already occurred. Since my original post I've had two full knee replacements and I am waiting for a hip replacement. Also have a lot of erosion in ankle and feet. I only wish I'd been given enbrel sooner.

Whilst waiting for and recovering from surgery I had to stop enbrel. I think this has caused problems with my system as the enbrel is not as effective. I'm seeing rheumatologist in a fortnight to discuss other biologics or infusions.

I hope you get on well with it. It is a wonderful drug but was given to me too late. An issue I need to pursue with the health authority perhaps??

Good luck and keep well. Deborah

Hello deborah67573,

Sorry to hear how advanced the arthritis is for you and about all the surgeries for joint replacements being done.

I recently had surgery, not related to arthritis, in late October, so I too had to go off Methotrexate and all the supplements I have been taking for the arthritis. Two days after surgery, just about every joint in my body experienced severe pain and swelling, I could barely move. These areas included my neck, back, shoulders, elbows, wrists, hands, fingers, knees, ankles, feet and toes, even the left side of my jaw was affected for several days. I did a Methotrexate injection two days after surgery, which worked tremendously well at decreasing the pain and inflamation until around 4:00 pm the next day when my shoulders again began aching really badly. I was put on Enbrel because the Methotrexate never has worked well by itself, but I was hoping not to have to take any additional medications. The Enbrel has worked really well after the first shot. The inflamation is now almost non-existent, even though my fingers are still a bit stiff, they do not hurt. I give myself the second Enbrel shot on Thursday of this week. My rheumatologist said I should be able to go off Sulfasalizine and Prenisone at the end of November. I have already quit taking Tylenol and my Ibruprofen usage has decreased dramatically since beginning Enbrel.

As for the sinus problems, I have been eating raw local honey for about three years now. I will take a tablespoon in the morning and another one or two tablespoons in the evening. Even though everyone in my family has has colds numerous times, I have not had any colds for over three years. I have had two sinus infections, but these could be related to my seasonal allergies or perhaps the Prednisone and/or Methotrexate. My family refuses to eat raw local honey and my wife and one of my daughters both have colds again. Hopefully I can avoid any of the many Enbrel and Methotrexate side effects going forward. If you try raw local honey, perhaps begin with a teaspoon full twice a day to see if it helps. Perhaps there are some beekeepers in your area of the country or maybe a health food store that sells raw local honey.

Take care and keep well,

Don

Thanks for that Don. I will try the honey. Always on the lookout for anything to ease things.

Sorry to hear about your inflammation and I'm glad you are getting some relief from the Enbrel.

Methotrexate is a hard drug to take. Horrid side effects for me. Sickness and fatigue are no good for me. I'm 49 and full time teacher with two teenage children!

We just have to keep taking the potions, keep looking to nature and do the best we can!

Best wishes Don. Deborah.

Hello Deborah,

Hopefully the honey will work for you as well as it has for me. My family absolutely refuses to try honey, they say they do not like the taste. I just love it. I would rather eat honey every day instead of having a cold for two weeks. Of couse some people do not believe honey does the body good. My allergist does not believe in it. I know this from past appointments. I had to visit my allergist yesterday for allergy testing for honeybees, as I was stung my one of my bees in September and had a reaction. So I learned yesterday I am officially allergic to stings from honeybees, yellow jackets and bald faced white hornets. Oh boy, let the new adventure begin.

What my wife does not understand apparently is that I am on two medications that severely compromise my immune system, so I really do not want to be around people with colds all the time. We will see how this one goes.

Let me know if you notice a difference when eating raw local honey. I am also taking turmeric capsules and fish oil capsules. I am not sure if either of these are helping at the moment. If you find something else that works, please let me know.

Take care and stay well. Enjoy the Thanksgiving holiday.

Don

I will Don.

Happy thanksgiving to you. Enjoy your special day.

From me in the UK!

Hello Deborah,

Thank you. I will enjoy the Thanksgiving Holiday by spending time with family. I just gave myself the second injection of Enbrel yesterday. The pain that began in my wrists and ankles yesterday is gone, but my fingers are still somewhat stiff. I will inject the Methotrexate on Saturday morning. Hopefully the combination of these two injections will began to work really well together.

Don

 

Hello deborah67573,

Have not heard from you in a while, how are things?

Don

Hi jemini04

Yes thank you my two new knees working quite well. I'm so glad to have less pain. I've been on the Enbrel for almost three years now. It's routine now!

Initially I experienced hot flushes and sinus problems but they subsided. I put on about a stone in weight. If I stop taking the Enbrel due to having a virus my weight goes straight back down. Very strange. I've not had many more viruses than I would normally. Initially I had a couple of waterworks infections but it settled. It has helped my other joints especially my smaller joints. It was too late for my knees and hip. Overall it did improve my quality of life.

Give it a go. It is worth it to have relief from pain and inflammation. It also means you might be able to drop some other disease modifying drugs and anti inflammatory. Good luck. Deb

Thank you for replying. I'm very happy to know you're doing better. I'm prone to throat infection monthly or once in two months. I have to travel from east Africa to India to treat my arthritis and It's sad that we don't have new technologies in our country. But however I'm half way there to convince myself to make this treatment happen. Thanks for your time and reply. It means a lot. Best wishes.

Hello jemini04,

Sorry to hear about you having spondyloarthropathy and ankylosing spondylitis, I only know a little bit about these through internet research, but I know they have to be painful. In 2003 I came down with palindromic rheumatism. This painful condition continued for about three years, then completely when into remission. Then in spring of 2013 I came down with rheumatoid arthritis. Painful inflammation mainly in my wrists, hands, fingers, ankles, feet, toes, and sometimes in my knees. I began Methotraxte injections in January of 2016, this worked very well for a while by itself. Then on October 26, 2016 I had to have surgery for something completely unrelated to the RA, so I had to be off all medications for ten days. The surgery went well and if it was not for the RA issues two days after surgery, I could have returned to work four days after the surgery.

Two days after surgery I felt so much pain I thought death was going to be the only way out. Every joint in my body that usually had movement, no longer had movement. My neck, back, shoulders, elbows, wrists, hands, fingers, jaw, knees, ankles, feet and toes were all affected. Many of these joints had never been affected by the rheumatoid arthritis before surgery. I injection Methotrexate, by the next day I was feeling like I had some life left in me. However, the Methotrexate was not working as well after surgery as it did before, perhaps the surgery really stressed my entire body out.

On November 16 I had an appointment with my rheumatologist, it was then that he had me begin Enbrel 50 mg injections once each week. The day after the first injection, almost all of the pain and inflammation in my body was gone. Like you and many other patients with various diseases, I put off Enbrel as long as I could, because of the possible side-effects. However, the way I was living or perhaps wasn't living, the pain I was in, the inability to do anything, I thought I was even going to have to quit working, Enbrel has done an amazing job at giving me my life back. In fact on December 23 and 24 I went cross-country skiing and had a blast. Without Enbrel and Methotrexate, I would not be enjoying life, as it would be impossible to do so. When the weather warms up, I will again put my rollerblades on and begin enjoying active exercise once again. 

The side-effects of both of these medication do make me a bit nervous, but having an autoimmune disease such as rheumatoid arthritis or one of the many others, does make us more susceptible to getting other considitions as well. I do eat raw local honey every day, two tablespoons every morning and every evening. Raw local honey has helped to keep me healthy even when everyone else in my immediate family has had multiple colds since December of last year. I have not had any, even though I am around people with colds all the time. I am also in school to become a certified medical assistant. With my work schedule, time in classes and time doing homework, I am busy for 70 to 80 hours each week. Truly exhausted, but also truly healthy compared to my family members who refuse to eat raw local honey. Honey every day may help reduce your throat infections as well. I have also swithed to an almost all vegetarian diet with leaning toward become vegan to try to make my body healthier in hopes of sending my RA into remission. Not sure if this will work, as my rheumatologist told me at my last appointment that some people do experience remission, but since my RA markers in my blood tests were so elevated, he does not ever see me being able to go into remission. I hope he is wrong in this.

Please let me know what you decide and how things go for you.

Take care,

Don

Hi don,

Omg as much as I feel the pain for you I'm so happy you're doing better in life. I pray that nothing more bad shall come in your way anymore. My mum had RA 5-6 years back and she was on methrotrexate tablets and it was worse for her and she finished her course but with being treated well and her RA gone completely. We got her testes for rheumatoid arthritis and it shows negative. I'm glad she's fine. And as for me I have decided to take the injections. It's a do or die case. As much as it's depressing for me I'm trying my best to be positive. I'm so glad to have found this page and it makes me feel better from the support getting from you all. It means a lot. Thanks. I will keep you all updated. I have next appointment on Tuesday. Let's hope for the best.

Best wishes.

Hello jemini04,

Oh the dream of going into remission. Only time will tell.

Yes, please keep me updated as to your experience.

Don

Do not use predisolone have serious side effects the combination of methotrexate is very toxic I would no use that , just go and do an MRI if you no have any cancer and if all is clear use the Enbrel sparingly you see great benefits but monitor your blood tests with your doctor and avoid the fear driving a car is great risk but we all enjoy driving , life without risks is no worth living , most here have some phobia , possible side effects , fear is a severe emotion who cause the person to think no correct I guess we all have it ,