Cimzia : Hi, this is my first time posting on here... - NRAS

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Cimzia

Bez06
Bez06
โ€ข16 Replies

Hi, this is my first time posting on here.sorry if its too long. I was diagnosed with spondyloarthropathy in 2015. Started on cimzia 2016. Had second mri to check if the cimzia was working. Consultant said the cimzia was working, it had reduced all of the inflammation but my bonesare severely damaged(which is irreversible) so pain management and continue on the cimzia to stop the progression. He then diagnosed me with fibromyalgia and put me on ammitryptaline. Fast forward to 2018 and I'm in and out of hospital with repeat infections. Pain is still there but not as severe as before starting on cimzia. Have good days and bad. Took my last cimzia injection on 29.10.18 then rheumatologist took me off because of repeat infections. Rheumatology nurse said they will take 12 weeks to leave my system. Had mri 1.2.19. Went to see my rheumatologist on Monday and was told there was no inflammation on the mri. I wouldn't be considered for any other biological drugs and said it was mechanical back pain now. Since having the mri in February my pain and stiffness is getting worse and worse and slowly but surely going back to what it was before the treatment started. I was wondering if anyone else has any experience of being taken completely off the biological drugs, and if so what was the outcome. I was told I'd be on cimzia for the rest of my life to stop the progression. I'm really worried now what's going to happen because I'm really struggling with my mobility again and feel as though its spreading. I'm 46 and have an energetic 6 yr old to take care of, I'm not getting any help from anywhere and I'm really struggling ๐Ÿ˜ข๐Ÿ˜ข

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Have you asked to see a physiotherapist....if your rheumatologist diagnosed mechanical back pain maybe physio would help.Ask your rheumy nurse...maybe she can get you a referral.

Bez06
Bez06 in reply to AgedCrone

Hi, I've already been to physio it made the pain alot worse. I do very light yoga each day to do streches etc. I'm unable to do much more because of the pain. I don't see how it can be mechanical back pain if I've got spondyloarthropathy and severe bone damage ๐Ÿ˜”๐Ÿ˜”

AgedCrone
AgedCrone in reply to Bez06

It was just a thought...sorry the physio didnโ€™t help.

How long did you persevere with the physio.......as it didnโ€™t help bang on at your rheumatologist for some alternative solution.You canโ€™t be expected to live in agony.

I wonder if you could get a second opinion......a fresh view on something like this may produce some relief for you. Maybe try getting to see someone in a big teaching hospital which has a thriving rheumatology department?

Wish you well.

Bez06
Bez06 in reply to AgedCrone

I had 4 lots of physio and then acupuncture before my diagnosis and treatment. I've since had 2 lots of roughly 8 visits in the last two years. I've spoken to the Secretary of the consultant I'm under today to ask for further assistance as what to do. I can't go on like this. Thank you for your replies and input, its very much appreciated ๐Ÿ˜Š๐Ÿ˜Š

AgedCrone
AgedCrone in reply to Bez06

Itโ€™s sad but true that you definitely have to stand your ground to get the treatment you really need. I plodded away for many years not wanting to make too much fuss....thankfully I have always had rheumatologist who have gone the extra yard to help me reach the level I am now at.

I found explaining the practical difficulties I encountered, rather than argue the odds about suitable clinical treatment for my symptoms, got things to a level we all understood & could move things forward to get the treatment that worked for me.

Please keep us informed how you get on.

Bez06
Bez06 in reply to AgedCrone

Yes think I need to speak up more. Thank you for speaking to me. May I ask what your diagnosis is if that's ok? ๐Ÿ˜Š

AgedCrone
AgedCrone in reply to Bez06

Iโ€™ve had sero+ RA for 20 years......thankfully drugs now available have made my life much more bearable.

Bez06
Bez06 in reply to AgedCrone

Ohhh thats good then. They're coming up with new things all the time aren't they.

AgedCrone
AgedCrone in reply to Bez06

It certainly is...I was sure getting fed up with chopping & changing DMards, thinking (hoping) this one must work & it didnโ€™t with various distressing side effects.

I have had nothing but benefit fro Rtx....but I am still not complacent...this disease can come back & bite you where it hurts!

Do talk to your GP a second opinion from a different consultant.

Bez06
Bez06 in reply to AgedCrone

I will, thank you ๐Ÿ˜Š

Hi Bez06

I hope you get what you need very soon.

You have encouraged me to push for better pain relief since I cannot tolerate Tramadol.

I do use CBD oil but sparingly as it is so expensive. But I want to know the cause of so much pain when not in a flare.

You seem to be having a tough ride. I hope that will improve now.

Bez06
Bez06 in reply to charisma

Thank you for your message charisma7aj ๐Ÿ˜Š

Hmmmmm. So if you have bone damage and diagnosed with spondyloarthropathy have you never been given a more specific DX such as ankylosing spondylitis? When you say bone damage do you mean there is fusion? I thought that 12 weeks would not be long enough to show the true picture. It may take 12 weeks for the cimzia to leave your body (although my cimzia patient alert card says i must still carry it for 5 months after my last injection as side effects can still happen so I question the 12 weeks point) but I thought it took longer for your body to return to its pre cimzia state, which it will if you have AS i.e your inflammation will return and the damage will resume.

Have you spoken to the NASS help line as they are very knowledgeable and helpful? That would be my first port of call. Then, armed with the info they give you, ask your rheumatologist to fully explain why your medication is being stopped and why when you reacted so well on the cimzia apart from the infections you are not able to try another biologic.

Good luck!

Hi jnmmum. That's what I said to the rheumatologist, when I had the mri it hadn't been long enough. They've only said spondyloarthropathy with a family history of psoriasis. I'm hbl27 negative and I've got sacroiliitis to. I really can't understand what's going on. I'm getting reallybad pain again just like before. I was only told the bones are severely damaged. Didn't mention any fusing. Every thing i said to her i was either wrong or it wasn't acknowledged. Thank you for your help, I'll contact the nass helpline ๐Ÿ˜Š

If you have a family history of psoriasis, you may have psoriatic arthritis, it usually starts in your low back. I would do as the others say, call,talk ,email to whoever you can,dont stop fighting for your health! They cannot expect you to live in agony! It doesn't make sense. I am so sorry you are going through this, praying for you to be able to get help through,and that you get a second opinion.

Bez06
Bez06 in reply to Iluvgardening

Thank you for your message lluvgardening. You and the others have given me the strength to keep on fighting. I was ready to give up this morning. So very tired of constantly battling every day. I've contacted my consultants secretary. Waiting for a call back and I've contacted the nass as advised. They were very helpful and appalled at how I've been left in so much pain. They couldn't understand why i wasn't put on a different biological drug. ๐Ÿ˜Š

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