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Treatments

A MySpondylitisTeam Member asked a question 💭
Lytham St. Annes

After taking enbrel for 8 months without any benifit. I seem to have gone down hill. The last 6 have been bad. Meds doing nothing. Could enbrel have left a lasting side effect or is it just A S causing all my moans. How can I tell when symtoms are so similar??

July 7, 2018
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A MySpondylitisTeam Member

I have been on celebrex for the past 10 years I take it every morning on time ,if I miss a dose I certainly feel it in all my joints . I also started doing some limited yoga stretching exercises i have a ceramic hip replacement and my dr said be careful not to do poses that might dislocate the ball from the socket. I also walk .some days it works and some days not so good.

July 9, 2018
A MySpondylitisTeam Member

It may be worth taking to your specialist to see if they can change you to another biologic as it sounds like maybe this didn't suit you. It seems to be a reoccurring problem from us all that we aren't good at asking for help so tend to overdo it maybe this is something they should research

July 8, 2018
A MySpondylitisTeam Member

Hi @A MySpondylitisTeam Member, here is what the maker of Enbrel says "What are the possible side effects of ENBREL?
ENBREL can cause serious side effects including: New infections or worsening of infections you already have; hepatitis B can become active if you already have had it; nervous system problems, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes; blood problems (some fatal); new or worsening heart failure; new or worsening psoriasis; allergic reactions; autoimmune reactions, including a lupus-like syndrome and autoimmune hepatitis.
Common side effects include: Injection site reactions and upper respiratory infections (sinus infections).
In general, side effects in children were similar in frequency and type as those seen in adult patients. The types of infections reported were generally mild and similar to those usually seen in children.
These are not all the side effects with ENBREL. Tell your healthcare provider about any side effect that bothers you or does not go away.
If you have any questions about this information, be sure to discuss them with your healthcare provider. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088" That sounds to me like the answer to your question is yes. I have taken Enbrel back in the 1990s and for the last 3 year. I have had no side effects. However, it just didn't do anything for me.

September 24, 2018
A MySpondylitisTeam Member

I was on Enbrel 13 week s and was getting dizzier by the day. Felt as If I was always going to fall Ask Dr if it could be the Enbrel. He said to stop it and see In 4 days I was feeling so much better. It was not helping any way. I m in a lot of pain now but don't know if I m worse because of it.

July 8, 2018
A MySpondylitisTeam Member

It may take trying sessions with a few different counsellors to find one you can feel comfortable with and these are the ones who are as non judgemental as they are supposed to be! If you have Fibro if your hospital have a fibro clinic it may be worth asking for a referal there, just beware of them trying any graded exercise, but ours did have a wonderful counselling service attached to it who did understand the pains and struggles.

You can refer yourself on line too which is what I was encouraged to do via Turning Point, they are a multi facetted advice with a mental health side as well as the better known substance abuse.

It was after a few phone calls with these guys after being ignored by the Drs that eventually a mental health nurse was sent out to monitor me every couple of weeks for the last 18 months as currently I cannot get out for the needed secondary care for what they believe is not just anxiety/panic/depression but either PTSD or cPTSD. It was the local carers group who encouraged me to call and self refer as I was ready to crowdfund to be sent to Dignitas.

I hope they could help you too x

July 8, 2018

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