Do biologics really work??
Hi
I am 62
live in the uk I got diagnosed with AS last year,i probably had it years ago but didn’t know as was working, going to the gym fully fit, used to walk miles.
No pains no nothing.
Now I am on my second time with the biologics second infusion and the side effects are dreadful.
Exercise is really painful to do and I know with younger people it helps but with me as I don’t have a young body it doesn’t seem to help. I have a lot of pain.
I don’t have a processed diet I do eat as healthy as I can but we are on benefits and our food prices are so high and our fresh vegetables are no longer fresh what is available by the time it gets to our supermarkets it’s mouldy and gone off.
It’s taken 12 days for the side effects to ease and I still don’t feel right.
rheumatology is not good in the uk, where I live they are short staffed and nine nurses and it’s a nightmare to get through to anyone and only 7 minutes call.
I can’t see a Gp as they are short staffed and actually most people can’t see a Gp which has got so much worse last couple of years, I have peripheral joint issue with the AS and osteoporosis.
When I got diagnosed the nurse said there looks like old fuzzy areas where it’s been and gone, so can it just do that?
And she said it was gnawing away and said the covid vaccine triggered it so re activated can this happen? Or she just saying that.
I have asked but she said that is what she thinks.
I don’t get answers, communication between me and them is terrible, I have different rheumatologists tell me different things and I am so stressed,my mental health is in a bad state.
When you have medical professionals tell you one thing and you get told the other what can you do.
I don’t trust any of them.
Thank you
Jan
Hello
How are you doing these days? How are you coping with you AS?
I have read your post and comments from last year and I am sorry you were struggling with getting answers, with finding the right treatment for you and ease your pain.
I am based in the UK like you. However I have a different experience and I feel I am well cared for. I work with good rheumatologist, I can count on my GP and I have been a member of the charity NASS for several years now and I attend their support exercise groups with physiotherapy and hydrotherapy.
May I ask where are you based in the UK? Depending on where you are, you could have access to expert rheumatologists in AS.
Like you I have AS (well AxSpa actually) with peripheral symptoms and biologics (in my case Humira) works magically for me. I have been on that medication for 9 years now and this has changed my life for the better.
I just want to say that we are here for support if you need. And it's possible to get good care for AS in the UK. If you want a second opinion, you are entitled to one without going private. You can ask your GP to refer you to another rheumatologist. I have done that myself when I was failed by the first rheumatologist I saw!
Then, I would recommend get in touch with NASS for support - they can help you with your care for sure, and other aspects of your life. Maybe you can join one of their local support groups? Here is their website: https://nass.co.uk/
Finally, one of the best places I have been for better management and care of AS is the AS course in Royal National Hospital for Rheumatic Diseases in Bath - again you can access to it with a referral from your GP or rheumatologist - it's a NHS program for patients with AS. I have done it twice and I cannot recommend it enough!! Here is the link with more information for you: https://nass.co.uk/managing-my-as/exercise/rehabilitation-courses/
I hope this helps. Let me know if you have any question.
Take care,
Julie (team member).hi Julie 😊 😊
You’re welcome, yes slowly but steadily getting there, see what the Gp is like.
Yes hydrotherapy sounds wonderful, I am on the waiting list I look forward to it, she said once I start having hydrotherapy it’s a course of six only and depending on how I go then can move on to physiotherapy.
It’s good you have had hydrotherapy for that long.
Yea not far from you about 150 miles by car.
Yes I don’t know why not in Newcastle but other areas have better services than here…
Thank you for the link.
I was looking at Acupuncture or osteopathy as therapy to help as well but both cost a lot and would take a long time to save up and if it didn’t help it would be a waste of money.
Thanks very much.
Take care.Hello,
Thank you for your reply!
It's great to be connected and be able to support each other 😉
I hope you are good today and have a good weekend.
Yes good call for acupuncture, I had few sessions last year and it works magically for my pain and fatigue. I could not believe the relief I got from it. I did acupuncture at a therapy centre which is also a Charity and we were in a group of people all receiving acupuncture treatment, so it ended up being super cheap. Maybe you could find something like that where you are?
Hopefully you can start hydrotherapy very soon!!
Take care,
Julie.
From one Jan to another Jan. However I’m in the US. I have been on biological for 2 1/2 years. I’m 75 with a long history of back issues. I’ve had two surgeries and neck fusion. I also have Rheumatoid arthritis and assorted other issues. The biologics have helped stop the progression of the disease. That’s not to say it ended my pain. The side effects are minor compared to the endless pain. Jan, I’m so sorry the biologics don’t seem to be working. It took over a year of infusions before I noticed any change. It has been gradual. Please hang in there. It may take time before you see or feel any relief. My thoughts are with you. I know your pain.
Kind regards
Janhello Rebecca thank you for your kind messages.
The thing is I am open to knowing everything I can about this condition and from the rheum team I don’t get any answers apart from a book on the infusion which still didn’t explain everything I should know about.
I ask questions and get dismissive answers, it’s like they don’t understand or want to understand how I feel.Clear and consistent communication doesn’t happen with them, there is only nine rheumatologists and when I speak to them they don’t who I am and have no notes,on me, your lucky if you talk to one rheumatologist who knows you.
The infusion team also struggle with them and said it’s a hard team to deal with so I have no chance.
Support no chance either, bloods-at the hospital are checked occasionally, you have bloods done, and even then you get less than half an hour to explain everything.
When you ring up on a Monday to Friday, it’s a 7 minute call if you can get through and
Thank you for answering my question on Biologics, I have AS with peripheral joint I was told.
I have no idea how long biological medicine take to work either I wasn’t told said it depends on how you are with them.I can’t get a second opinion as you have to pay for it and as we are now on benefits,we have no money to go private, I know people do but we can’t,we just manage with the money we have to pay the bills and eat without having to go to go to a food bank and warm place.
Proactive I am but I still don’t have the communication.
I have started to write things down and will bring it with me when I next see the rheumatologist.
Yes I was told the risks are skin cancer, chest infections, and any infection.
Monitoring well only when no strikes are happening and it’s blood tests asking how I am in a certain amount of time you have to speak to them and that’s it.
I only had the infusion twice and first time yes it wasn’t that bad apart from headaches but this time very different.
The rheumatologist team, knew In December 2021 I felt suicidal because of the severity of the pain and they knew about the anorexia as well I had as a teenager but with all that I am still lacking in support.
I also don’t know about how covid will effect me if I get it again as on biological therapy.
In the Uk covid is classed as a cold which is ridiculous but everyone thinks the same even the medical professionals.
I am struggling in going out and mixing with people as I don’t know if they have covid or not and I always wear a mask but no one else does, it’s difficult as my daughter and granddaughter are deaf and her husband is but grandson isn’t, everyone mixing and I am not as don’t know if safe or not.
I just have no answers to questions.
I am just stuck with a team without communication.
Your support here and the community is invaluable and it helps so much.
I really appreciate everything.
I will let you know how things go.
Sending love and hugs 🤗
Thank you 🙏
Janhave you tried your own research online? There is a site for medical research called pubmed. If you type in your question or search terms, it will give you articles. If you hit filter, you can narrow the selection to just articles that are free. Some of the medical jargon is a bit difficult, but if you read just the intro and results/conclusion, you can get a lot of info about diet, drugs and progression as well as explanations of the disorder you are researching. Even in the US it is important to educate yourself and go armed with info when you see or talk to medical professionals. And remember, you know your body best so be a strong advocate for what you want! hello Vicky oh yes I have, had lots of help on this site and so much support, I sent an email to the manufacture, I google,i do educate myself but you know what, in the uk by doing that and information told them, you take it in and I tell the doctors and rheumatologists,they don’t like it, they don’t listen to anything I say, they don’t believe anything I say they say I am not the doctor and they know what’s best for me not me, I have no control over my life at all.
You are definitely in a terrible predicament. I'm really sorry to hear about your experience with chronic pain and the challenges you've faced in receiving consistent and clear communication from your medical professionals. It can indeed be incredibly frustrating and distressing when you receive conflicting information from different healthcare providers and/or are unable to connect as frequently as you need. Support is crucial to well-being and recuperation from flares and pain due to AS.
To answer your question, clinical studies have demonstrated the effectiveness of biologics in managing AS symptoms. They have been shown to improve pain, stiffness, mobility, and overall quality of life in many individuals with AS. Biologics can also help reduce the inflammation in peripheral joints, entheses (sites where tendons and ligaments attach to bones), and other areas affected by AS.
With that said, the response to biologics can vary from person to person. While many individuals experience significant relief from symptoms, some may have a partial response, and others may not respond at all. It may take some time to find the most suitable biologic medication and dosage for an individual's specific needs.
In such situations, here are a few steps you can consider taking: Getting a second opinion if possible. Another expert's perspective might shed more light on your condition and provide alternative treatment options - such as pain management or physical therapy. Secondly, being proactive - openly discussing your worries and asking for clarification can foster better communication and help address your questions or uncertainties. Keep a daily log and bring it with you to appointments. It can help guide you and your practitioner as to what benefits you and what hasn't helped - this may help you in feeling like you aren't going in circles with treatment.
As with any medication, biologics do carry potential risks and side effects. I am sure you are aware of some of these, as you stated this is a major issue. Regular monitoring and communication with your healthcare provider are crucial to ensure the medication's effectiveness and to manage any potential side effects or risks. Discussing worrisome effects with your provider is emphasized here. Remicade may not be the medication for you. As you stated, it was working and has now decreased in its efficacy as well as causing horrible side effects.
I do hope you get better care as it seems you are in a very tough spot. I send strength to endure and light and love your way. Please keep us apprised of our situation. We support you through this difficult time. With warmth ~ Rebecca (community moderator)
