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
I'm so sorry to hear the troubles. I honestly think they do not know enough about this disease at all. I am not quite as old but agree that it's difficult at my age to keep up now. I'm on Hyrimoz and I hope it's slowing down the progression but I do not believe it is helping the pain. I also take duloxitine 60 MG am and 30 MG pm. I can't take more because makes me to tired. I also take 9 2.5 MG tabs a week of methotrexate for the pain. Then I take diclofenac as well. My neck is only able to turn a little each side and worse as time goes and my lower back hips area is very painful. Struggle is real when sitting standing walking hurt to much to handle but I still have to work. Work places should include breaks with areas to lay down lol. Hopefully you could grow some of your own veggies and fruit that may be helpful. I do know for me being in water helps a lot. I just cant always handle the colder temps so needs to be heated pool.
I wish you luck
Thinking about you! Let us know how the treatment works. All the best, Kathy (Team member)
Hi Kathy I will do thank you
Take care
Jan
My first biologic Cimzia worked great for about 2 years then it failed. I'm now on my second biologic Simponi, it works but not as well as the first one and I take it every 21 days vs 30 days. I do need to get cortisone shots 1-2 times a year when I flare badly. Overall biologics have made a big difference keeping me active.
Thanks for sharing your experience. It’s encouraging to hear that biologics have helped you stay active, even with the ups and downs. Needing cortisone shots during flares sounds tough, but it’s good you have that option when things get rough. I hope things continue to stay manageable for you! -Latoya (Team Member) That sounds incredibly frustrating. I truly hope Simponi starts working better for you soon. You deserve some relief after all you’ve been through. Thanks for being open and sharing your experience! -Latoya (Team Member)
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
Jan
