Cimzia for 5 months

Hello to everybody!!!first of all sorry for my english! I am from Greece an I’ve been diagnosed with PSA since november 2019 after a fall during a walk and hurting my knee. I suppose that was the thing that trigered the ilness. The stranger thing is that I dont have psoriasis, but my father and my brother have. I am hlb27 negative and all the tests for rheumatoid arthritis were negative too.I am 30 year old and i want to have babies so we had decided with my doctor to start cimzia. I started cimzia in december and i felt great. I did lab tests after three months and the crp was totally normal.After one month i did another lab test and my crp was slightly increased (1.66 mg/dl). My doctor said that it was OK. I am feeling good but i am very anxious and i think all the time that cimzia had stopped working. I want to ask the people Who are taking cimzia for how long they are taking it and after how long it has stopped working??
I am taking it for 5 months.
The funny thing is that i am a pharmacist, i know how medicines work but i want support from you guys as i am constantly thinking about PSA and many times crying and making bad thoughts about the future. I suppose that i havent accept the fact that i have PSA.
Thank you guys!!!

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Hi Janis,

Welcome! It is totally normal to worry about whether your med is still working, particularly at the beginning, and most people find that this just eases over time by itself as you come to “trust” the meds, doctors, system, and your body again, and get on with life.

I must admit I had the anxiety of thinking “what happens if I run out of meds and I’m only 42”. And the answer, as one wise soul here reminded me, is that’s really unlikely because there are so many approved already, and so many more in development. REALLY unlikely.

And as I’ve discovered for myself, over time I now feel like if it does happen (I’m more than 42 now - but say when I’m 49), I’ve got the confidence I’ll find ways to deal with it.

I’ve been taking Cimzia for a bit over a year now, and have good and bad days on it, but still think it is working. For most people, you will notice symptoms returning if it stops working. I was on Humira, which is very similar to Cimzia, and got a good 4 years out of it - and for most people I think 5 years plus is common, though sometimes people do only get 6 months for some reason or another.

You know yourself there are lots of possible reasons for a raised CRP, and that one blood test is just a measure of an instance in time (particularly with CRP which is such a short half-life). My CRP has never reflected my PsA at all! Was your raised at diagnosis?

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Thank you for the imediate response!!! For me the only thing “positive” for the diagnosis was a raised crp (5.5 mg/dl). I was negative for all tests of RA and also Hlb27 negative. Plus i dont even have psoriasis.

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Hi Janis and welcome too.

They say that most biologics don’t hit their stride fully until around 12 months. Obviously they decide much earlier on whether or not it’s working for you. But it seems you had a decent postive reaction so odds are that you’re just plodding on fairly coherently.

Remember PsA loves not to show up in blood tests. Many of us can have significant inflammation with a normal CRP and ESR. It’s why it’s called a seronegative disease. So it’s really normal to be diagnosed with PsA on the basis you’re not testing positive for anything. And remember CRP can be raised for a plethora of reasons not just PsA. You could just be fighting off a cold etc etc.

Only around 50% of us are HLB27 positive and not everyone gets psoriasis either or finds their psorasis awful at the time they were suffering from and diagnosed with PsA.

I’m HLB27 negative. I had truly horrid psoriasis in my teens (I’m 58 now). That disappeared in my 30’s and I was diagnosed with PsA aged 54 after it hit me from nowhere all of a sudden. My psoriasis remains ‘disappeared’.

It’s really shocking to be told you now have PsA and that it’s a chronic condition and that it’s likely you’ll be on meds for the rest of your life. It’s a huge shock. And it takes time to come to terms with it. A good long time. There’s a sort of grief process that you go through. So I really understand how you’re constantly thinking about PsA and indeed crying and worrying so much about your future. I really understand that. So please have a huge cyber hug from me.

It gets better, I promise, emotionally at least. When I was diagnosed I could barely walk at times, now I don’t think twice about going for a decent long walk with my dog. I’m no longer scared of the meds (I’m on my 5th one now), some worked, some didn’t, some had side effects but I got through all of it without any lasting issues and it’s easier now. I did though avail of some psychotherapy at the beginning - that really helped so perhaps think about getting that sort of help. I found it utterly invaluable. So please have some more hugs.

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Hello Janis.

Well I don’t have any personal experience of Cimzia but note that @Jen75 says it is similar to Humira. I started Humira in 2014 and changed to its bio similar Imraldi a couple of years ago (as per NHS policy in the UK).

My early experience of Humira was that improvement occurred over a long period. It’s difficult to remember exactly, but I would say that after a year or so I was considerably better and that happy state of affairs has lasted. My feeling is that PsA is probably a long time coming before obvious symptoms appear and that accordingly it can also take a long time to calm down even on the best drugs.

We all want a quick result but what matters most, perhaps, is sustainable treatment that changes our lives for the better. I hope Cimzia proves to be just that for you.

Oh gosh, this must be familiar to so many of us. To be honest I still haven’t totally accepted that I have PsA and I was diagnosed in 2012! But these days that is usually because things are so much better! When I do have a rough time, as happens occasionally still, there’s usually a period of denial during which I wonder ‘What’s happening?? Why does this or that hurt? What have I done wrong?’. But then, with luck, along comes the ‘this too shall pass’ feeling and I ride out the bad patch with my usual mix of bad temper, self-pity and a minuscule amount of good sense.

It is okay to cry, of course it is. Please seek support every time you need it. Welcome!

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Thank you, Thank you Thank you!!!your support is the Best drug for me really!!!

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So many of us can relate, Janis, to your feelings of disbelief and non-acceptance. I was diagnosed after 20 years of the doctor thinking that I was a nutter: I didn’t have any obvious psoriasis either, just pain, fatigue and joints that started having problems at about 50.

I remember being diagnosed and then finding this group: the good people here taught me to be proactive and pushed me into becoming an advocate for myself. Sounds silly, I know, but I did learn to stick up for myself and find the right medical help and treatment. I’m now quite well, even though PsA limits me in what, and how much, I can do. I give credit to this community for helping me get there.

Cry if you need to. It helps. Hang in there, and hang out with us here. there’s no better support for you, than listening to others and giving them support. Really.

Big hugs for you! :heart:

Seenie

Know how you feel, on one hand it is a tough diagnosis, on the other you were extremely lucky to have it so early on in life. Many of us had 20 or 30 years delay in finding out exactly what was wrong with us, I did not even know of its existence. Having a diagnosis allows for timely treatment before permanent damage occurs to parts of the body, so you have the opportunity of managing the condition with good results after a series of trial and error therapies in the worst case, at the beginning in the best one. In any case knowledge is king. Depressive episodes are connected to the disease, possibly due to inflammatory reactions, and things should improve once your treatment will be under way and you will resume activities in a better shape. I was horrified at diagnosis myself, and still tend to be down about it at times, a mixture of anger, frustration and depressive bouts. In those moments I try to think about the wider picture of general human condition to get perspective. A thought that brought me courage was a chance meeting with a lady in hospital some time ago, who told me she had been diagnosed with Rheumatoid Arthritis in her case at a similar age to yours. After telling me about how initially she had had big pain and difficulty taking care of young children too at the time, she added that she then had had 20 years remission! You will feel better soon with the right medication, and you are not alone with this illness, which achieves great improvement with treatment. All the best,

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Hi Janis!
My name’s like yours but I was always disappointed my parents spelled it Janice. The only thing I like about it is it has the word “nice” in it! I wanted to change it to Janis when I was younger!
Anyway, I just wanted to say it is a hard thing to accept having a chronic disease. Especially because with PsA you really don’t know what’s going to happen in your future. Am I going to continue to get worse, will I become disfigured and in so much pain I can’t handle it anymore? I’m sure most of us have gone through the anxiety you’re having now. It’s hard to convince yourself that everything will be okay.
I was lucky my PsA didn’t get diagnosed until my 50s. Psoriasis started severely in my early 20s, but I never worried about it. Yes, I covered it—I didn’t want people to be grossed out. Once my psoriasis settled down it was moderate. PsA symptoms were moderate at first, too.
Finally, 8 years after diagnosis and 6 years ago at 61 I went on Enbrel, which was a godsend. The anxiety about having PsA didn’t go away though. It was on my mind 90% of the time.
My kids convinced me I had too much anxiety, and suggested I try Zoloft (Sertraline). I try to avoid pills as much as possible, and I was insulted my kids told me I couldn’t handle my anxiety, but they were right. I ended up asking my doctor to start me on a small dose of Zoloft. So I’ve been on on 25mg for about 3 years—which is a child’s dose. It works GREAT! I don’t think about my PsA at all—well not 90% of the time, but maybe 2% of the time!
I hope you can find a way, some way, to clear your negative thoughts about PsA. My way isn’t necessarily right for anyone else, but I just wanted you to know you aren’t alone and you will figure out a way to lessen the anxiety you’re feeling now.

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