Psoriatic Arthritis - Know your options!: Hi Everyone... - NRAS

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Psoriatic Arthritis - Know your options!

Hi Everyone,

I was diagnosed with PA this year, boy, I was worried. It started off by my daily tasks becoming a challenge, then the fatigue kicked it, I don't nap and I had too everyday, it was becoming out of hand. Then, my lower back and neck started hurting and my hands started swelling. I was told "I was working out too much", didn't think anything of it. I ended up getting bloodwork done due to a hand injury, when the results came back, I went to see an Rheumatologist. They said immediately... you have Psoriatic Arthritis. I was shocked.

I started off on Methotrexate every week, self injected into my stomach, etc. and ended up feeling super sick, lost my hair and beard, was in bed for days and I did this for 3 months. It DIDN'T WORK! Then I was on leflunomide for a couple of days, it gave me a bad reaction, so now I am taking CIMZIA, it works and works well. I have swollen injection areas, given what I read, it seems like you need to let it get to room temperature (the doctor told me take it out of the fridge 30 minutes before doing). I am going to wait an hour.

What I want you to do, before anything, is find out what drug coverage you have (I'm in Canada). My work benefits covered CIMZIA without having to take all the other meds, if I would have known that, I would have NOT taken Methotrexate. For those who are on it, google it, it's used for abortions, cancer treatment, etc. NO THANK YOU!

So now, I will be on CIMZIA for the remainder of my life, fun fun fun! It's nice to have a support system of people who are going through something similar. Feel free to share your story.

PEACE LOVE AND LIGHT!!

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Sorry you have joined our club, but sounds like you’ve found a good solution for you.

But drugs are very individual and what works for you could just be awful for me and vice-versa. For many of us (including me) methotrexate is a brilliant drug. It put me in remission for 8+ years, and I’m still taking it with no side effects. And Cimzia carries some pretty serious risks too, like increased risk of lymphomas and blood disorders as well as laying you more open to serious infections. So none of the drugs are actually fun, fun, fun. It just a question of what’s the least worst for you and works best.

But a good point to check out your insurance cover if you are in one of the countries without universal healthcover.

(Oh, and sorry to break this to you, but if you are not taking methotrexate alongside the Cimzia then there is a risk you will build up antibodies to it in a few years time and it will stop working. Luckily there are about 20 other drugs to try.)

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"if you are not taking methotrexate alongside the Cimzia then there is a risk you will build up antibodies to it in a few years time and it will stop working."

I have seen this mentioned before but can't find much information about it. Does this apply to all biologics/biosimilars? I do not take methotrexate, never have. I am fairly certain my Benepali stopped working in June, less than a year after I started taking it. I'd be interested to know what the reasons are. Or if it was really working at all and maybe things just got worse in June for other reasons.

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It’s never an easy road with this disease but it’s working for you now 🤞it’s keeps on working.

My sons live in Canada 🇨🇦 a great place to live they tell me . May get to visit one day.

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So glad you have found a drug which works for you and that your health insurance meant it was available to you. Unfortunately here in the UK the choice of drugs is down to the severity of an individual's RA and, of course, their individual reaction to a drug, due to the fact that the NHS is under cash restrictions in regard to prescribing biologics. Most of us do not have private medical insurance. The 'gold standard' first line treatment here is Methotrexate - speaking from my own experience I was not offered any other alternative when diagnosed, although I was very reluctant to take it. There is an NHS protocol which means you have to 'fail" on DMARDS before you can progress to biologics (even then only if your RA is severe enough). So choice is limited and I very reluctantly chose methotrexate over pain and no quality of life. After a slow start, 11 months on it's working pretty well for me and I just have to put aside thoughts of what it might be doing to my body given that other drugs including biologics have risks and I'm being monitored via monthly blood tests

Apologies for the long post but I just wanted to reassure others who maybe don't have the choice that methotrexate can and does work for some but not all. Just like all the other drugs available in fact!

Very best wishes for the future and hope Cimzia continues to be the solution for you.

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Hi

I tried methotrexate for 12 months didn't work and felt sick the whole time.

I am on cimzia injections every 2 weeks. Yes gets a bit swollen on the injection site for just a couple of days so no bother.

I am in England I pay for my prescription only until next year when I reach 60. So yes this has been a very expensive time for over 20 years. However the cimzia is delivered to my home address for free! Don't understand why but the NHS hospital said it costs the NHS £10,500 per year.

Also take sulphasalzine daily.

All the best

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Hi fun guy - One thing that helped me with injections is to hold an ice cube to the area you are going to inject for about 10 seconds, then clean quickly with alcohol, inject, then ice cube for another 10 seconds. Very limited, if any, swelling or bruising. Best of luck with your new medication..

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Hi. RJRC! I took myself off of MTX after a year and a half when I got very ill. Kept calling the rheumatologist and she kept saying continue it. I finally said no more and stopped. Saw my cardiologist yesterday and told him I stopped taking it on my own. His response, “good for you.” We had a long talk and he wants me to try and do a plant based diet. He feels the processed foods I eat with few vegetables and stopping at fast food places are causing most of my problems. I’d like to live a bit longer, so I’m going to give up my “comfort foods” which I lean on because there’s no significant other in my life. Hopefully, in 3-6 months I’ll feel better. Also going to try turmeric again (had a reaction to it - an itchy rash that was relieved by rubbing olive oil on it - but I was on MTX at that time. Now that I’m off MTX I’ll give it another try. If that doesn’t work, I’ll try CBD oil. Homeopathic rather than these harsh medications seems a better route to travel. Of course, not for everyone. Good luck with Cimzia. Sorry you lost your hair. They had me on Biotin and folic acid to help prevent that but I lost some anyway. Best regards.

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I had a reaction when I took my Humira shot. I take mine out of the fridge and hour before and I pour tea tree oil on the injection site. I no longer have swelling/redness or itching after injection.

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Hello everyone, have not been following so much f late as was so ill last xmas with pneumonia which turned very nasty because of the Cimzia, I had been taking Cimzia for 2 year but was getting a lot of infections especially UTI's and as just lately can't get into see G.P was sometimes left with a urine infection for over a week before getting help. So I stopped taking the cimzia, I was very bad at first and can now barely walk, but it is settling down, I bought myself a wheelchair and also a little scooter to aid myself getting about, My thoughts are that yes MTX and Biologicals and steroids, are strong meds, they do work and as the other choice is crippling pain I don't think we have a choice. So to RJRC all I can say is never mind the loss of hair and beard buy a wig. Hope you all remain positive and not get too down. love to all

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Does it make a difference if mild psoriasis goes untreated or not for progression to Psoriactic arthritis? I have had mild case just on elbows but this year it has crept down my forearm on one side. I have the cream for it but don't use it all the time. Sometimes it has just disappeared on it's own.

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