Hi! Terrified of taking Enbrel...how is anyone else coping with it?
Posted , 30 users are following.
Hi, new to forum. Had RA for 16yrs, in middle of flare up. Methotrexate injections making me ill with nausea, vomiting and desperate exhaustion. Work full time with two children. Have just had Enbrel delivered. In fridge waiting for nurse to show me how to take it. I am terrified having looked at other forums and seeing side effects e.g. severe infections, A and E visits, comas right down to weight gain and runny noses! What are your experiences? Would really appreciate comments. Many thanks. D
4 likes, 58 replies
Kisses1960 deborah67573
Posted
i have a fulled seal box in my fridge.if YOU like to test it 1st...let me know...i gesture it at a very nominal fee.thanks.
Kisses1960
Posted
better to test it 1st....
sherril56752 deborah67573
Posted
In America, they refer to Enbrel as the miracle drug and they don't use Methotrexate with it. Ive been on it for years and came off methotrexate. I have to say its been miraculous for me. then the NHS switched me to Benapali but my disease started to get out of control again. I was in a lot of pain by 3 months and my hands started to defirm badly again. I persuaded my Rheumy to switch me back. Took my first Enbrel injection again yesterday and soooooo very relieved. Can't recommend it highly enough! It's a life saver.
Texasaaa deborah67573
Posted
Been on Enbrel about 3 months I have an over active immune system which causes multiple issues like psoriatic arthritis and all that goes with that along with deformed joints, psoriatic skin eruptions, IBS etc
As my immune system was lowered much of the pain and stiffness, skin eruptions and IBS slowly disappeared I was getting excited about feeling better when out of the blue I started feeling a tingling and itching in my back, then the pain came as I realized I was having a shingles attack! I immediately went to my PC and he put me on an antiviral drug. I’m about three weeks into my shingles attack now. The antiviral drug seems to have stopped the progression of the shingles and so far it has not erupted in to open sores. The pain and itching remains but I’m thankful that the sores have not appeared!
I have stopped taking Enbrel And now have decided that I’m going to let nature take its course.
Shingles took advantage of my lowered immune system and all I can think of is, "what is next"? If I were to get cancer while on Enbrel I'd never forgive myself, If I get it naturally so be it
Good luck to everyone and I hope those of you who have had good luck continue doing so!
Bob
sierrapamela Texasaaa
Posted
The studies do not show that your risk for cancer increases with Enbrel.
This was a concern I had also as it suppresses t-cells. Get your PC to explain why it does not increase the risk of cancer. Peace of mind is very important with RA
martin31040 deborah67573
Posted
Hi, one of the best things you can do is to adopt a whole plant based diet, and go gluten free, don't eat any Animal products, meat, dairy, eggs, fish, eat vegetables, fruits, beans, grains, seeds, etc, take a B12 supplement, there is plenty of science backing this diet, worked great for me, I'm not saying stop your medication, but maybe discuss this with your Rheumatologist, we'll worth it.
sierrapamela martin31040
Posted
I found that when the RA got really bad I was even having a hard time eating. Yes I was on this diet and for years it was good, Then the stress in my life went off the charts with my husband and mother both dying. Diet can take you a long way, but stress can take one down fast.
sierrapamela deborah67573
Posted
The Enbrel has been a miracle drug for me. I was apprehensive at first, but I have been on it now for 2 years and only find myself getting better and better. It is the only thing I am on and I do not need prednisone anymore. I have had no side effects, but I do regularly see my dermatologist to make sure I have no skin cancers. The problem is that your doctor needs to make sure that you are clear of most disease processes. I had blood work done for all kinds of diseases and cancer markers before I started. Once you start on Enbrel you cannot get vaccinated unless your doctor says that you can. I was very concerned about the covid vaccine, but did get them all except the last one which he did not recommend. If you have a doctor who understands Enbrel, there should not be a problem.
Good luck
Pamela
susan13768 deborah67573
Posted
I took Enbrel for three years prior to retirement and am fighting to find a way to get back on it after I started on Medicare. it worked very well and I had no problems with side effects at all wonderful