Hi guys, I’m new here I’ve created this account for my boyfriend. He’s been living with PsA for 21 years (since he was 15). But i’m still new to all these. I want to learn more about PsA so that I can help and support him better.
In the past 10 years, he barely took any medication for his PsA because of the potential side effects. Recently he’s considering to give biologics therapy a shot. His doctor has prescribed Simponi to him. I’ve learned all kinds of scary side effects from google including risk of infection and cancer. I would like to hear some advice from someone who’s been receiving biologics. I’m wondering if there’s any way to lower the risk of infection/cancer, or if biologics is effective at all.
Also, as the shots are very expensive, he is trying to apply through his work drug plan and some government program. We are still waiting to see if he’s qualified. Is there any other suggestions?
I’m in the UK so I don’t have any knowledge about funding for biologics in Canada. However we do have many Canadian members and I’m sure some of them will be along soon
Now that I’m in my 60s, I realise to my horror that I’m becoming a piece of living history. The changes that have happened in my lifetime strike me as incredible, when I think about them. And of course I have had time to know many people with serious chronic diseases. PsA is potentially quite serious condition.
One of the changes I’ve seen is in treatment for diseases such as PsA. And if there is anything good that can be said about PsA, it is that recent developments in drug therapy make it a very treatable condition. Time was that the disease often resulted in severe disability but that is no longer necessarily the case. This is my (apologies!) roundabout way of saying that biologics are very good news indeed. When PsA hit me hard the first thing I did was to research treatment, even though I’d always avoided taking medication if at all possible. What I found out gave me hope and I have not been disappointed. I started Humira in 2014 and in that time I’ve been very well in general in addition to the huge improvement in the PsA.
Effective? Not for everyone. Realistically, there are some of us who have to try a few different biologics to see a result. But many of us here have had very good results indeed and often we find that the risks would seem to be over-stated, especially on the internet which does of course tend to highlight worse-case scenarios and scare stories.
You might like to try the search function (the magnifying glass symbol at the top right of the page) in order to learn more about Simponi and the disease in general. Even here, you will of course see quite a few problems mentioned as we all take to the keyboard more readily when things are going wrong. But I think this community is actually a very good place for a balanced view.
How is your boyfriend doing at the moment? He’s lucky to have such a supportive girlfriend, that has to be half the battle!
Thank you for taking your time to reply, Sybil I find this really helpful. I’m lucky to be part of this big family. This is way better than me cluelessly reading horror stories about biologics on Google.
Given the fact that my boyfriend hasn’t taken any meds for more than 10 years, he’s doing okay. Arthritis is mainly affecting his wrists and a few finger joints (with mild pain). He feels some stiffness in his neck. We really want to give biologics a try now. Hopefully we can figure out a way to be able to afford it soon:relaxed:
I think I have had PsA for a very long time, I first got a significantly swollen joint at 16 and in retrospect there were lots of signs over the years. I wasn’t diagnosed till I was 56. My rheumy agrees I may have had the disease at what she calls ‘background level’ all that time. More importantly I suppose, it was clearly active for at least 5 years before diagnosis. Yet I do not have severe joint damage.
There are others here who have catastrophic joint damage, often because the diagnosis was missed. Some of these members were, I believe, still walking and working long hours and so on while their joints were falling apart.
You know what I’m saying I think … it is ‘tread carefully’. PsA can be a nasty, sneaky little swine and its effects can be hard to discern until they get to a certain point. It can cause other things too, it’s not all about joints. For example, research suggests it can affect the mood or even cause depression. Inflammation can lead to all sorts of unpleasant things if it goes un-checked.
But anyway, I’m just chatting 'cos you and your boyfriend are clearly aiming for the ‘aggressive’ treatment (aggressive towards the disease, not aggressive in its effects on the body as a whole). And it truly does seem that biologics give us the best chance of staying active and staying well.
So what you could do with now is some thoughts about funding. Is he being treated in Canada? (Giving a shout out to Canadian members!!)
Thank you for sharing this with me :）He got diagnosed when he was 15 but never really did anything about it until this year. He goes camping/hiking a lot during summer and he has a long hour office job. You’re absolutely right. PsA can be very sneaky. I’m glad he finally wants to do something about it instead of hoping to be the lucky one.
Yes, he is being treated in Canada. The doctors has suggested him to try biologics therapy for three month first. Do you know if biologics has any rebound effect? We’re not sure if he has to be on it for the rest of his life or just during flare ups.
And good idea! I will definitely do a shout out. Thanks again
I know it’s time for others to jump in here. But just quick thoughts - biologics are taken regularly, not just during flare-ups. They can take a while to get going, but if they’re going to work, it is usually worth the wait. For the rest of his life … maybe. But medical science is coming up with new treatments all the time now, so that could change. People do take breaks from them, for example when starting a family. And there is always the possibility of something called ‘drug induced remission’ - something we’d all like for Christmas please Santa! Doesn’t seem to happen that often, though.
Rebound effects? Not sure what you mean, but if you mean side effects, then many here find that there are very few, for me personally, I might go as far as to say there have been none!
Hi Little Plum, and welcome!
You mentioned your boyfriend is concerned about the high cost of the biologics.
If you live on the U.S., there are some assistance programs offered for some of the biologics for people who are on an insurance plan through their job. I signed up for the “Enbrel Support” program, which pays for everything my insurance doesn’t cover.
His doctor might have brochures about this program or programs for other biologics.
I’ve created this account for my boyfriend. He’s been living with PsA for 21 years (since he was 15). But i’m still new to all these. I want to learn more about PsA so that I can help and support him better.
I find this really helpful. I’m lucky to be part of this big family. This is way better than me cluelessly reading horror stories about biologics on Google.