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Living with Psoriatic Arthritis (PsA)

Afraid of biologics


#21

same here


#22

Hi Laura. Ugh, the thought of a brain infection sends shivers down my spine. How scary! I haven’t heard of anyone else getting something like that, although some people do have trouble with serious infections. One thing we don’t know for sure is whether they would have ‘gotten’ (is that a word?) an infection regardless of taking the biologic.
I haven’t had SEs or infections since being on Enbrel for over 3-1/2 years now, nor have I had any serious illnesses. Nothing different than the norm for me.
Enbrel has definitely relieved my PsA pain. Unfortunately, nothing can really “fix” the pain I have from damage PsA caused, but I can’t even imagine feeling again how I felt during the months prior to starting Enbrel July 1, 2014. (I was diagnosed with PsA several years prior, but my pain was tolerable until it built up to the point of terrible). Looking back, maybe I should’ve listened to my Rheumy and started treatment with meds a lot sooner to avoid the irreparable damage I’m dealing with now. But oh well, hindsight is always 20/20.
Anyway, yes, I think a biologic will do you good. The sooner, the better to prevent further damage!


#23

Hmm, it’s funny you say less risky. For me, they are just different risks between the meds. MTX and prednisone really seem to do a number on my ability to fight infections, whereas biologics have not had an obvious impact in most cases, but I think that’s very dependent on your individual immune system.

On the other hand, now that lots of people are using biologics, it seems there is a slightly increased risk of skin cancer, though theoretical risks with with other cancers don’t appear to have eventuated (except in young males with Crohns and B lymphoma).

And don’t get me started on anti-inflammatories - people get serious kidney issues with prolonged use of those, and certainly when I leant on them too hard for a while, my gastritis progressed quickly (though I can’t prove cause and effect).

With regard to cats claw, I haven’t tried it, but if it did work the same as a TNF blocker, I can’t see why it wouldn’t have the same side effects (and is less likely to be well regulated if it’s not strictly a pharmaceutical - I hear people in China, for example, order their vitamins from Australia because we regulate our complementary medicines a lot more strongly than other countries, but even here it can be very variable how much of the active ingredient you are actually getting).

It is then left to you and your Rheumy to eight all the risks and likely outcomes.


#24

I think the issue is that there are risks of some sort no matter what meds you take or don’t take. The biologics, and some of the other drugs, come with risks - but they are risks, not certainties. Just because there is a risk of skin cancer, for example, doesn’t mean you are going to get it. And I would suggest that the long-term risk of not taking the drugs is higher - more chance of co-morbidities if the disease isn’t controlled (heart disease in particular).
My understanding is that the co-morbidities become less likely the more the PsA is controlled. In other words, despite their risks, biologics are adding years on to our life expectancy, despite the occasional horror story. According to a study last year, there haven’t been any in-depth investigations into the effect of biologics on the chance of heart disease in PsA, but it does say that there have been studies on people with RA and psoriasis on biologics, and the chance of cardiovascular disease was reduced compared to those not on them.

The other affects, of course, are that we can move more, so we get more exercise even on a day to day basis. Because we can go out and about, we are less likely to have depression, or do things like comfort eating or taking comfort from smoking or over-drinking.

My ESR was 119 at one point. After three months on Benapali, it is down to 3. That has to have an overwhelmingly positive effect on our bodies overall, not just with the arthritis. I know that I feel mentally more alert since this has happened (although some people around me might not think so!) and I would liken the sense of wellbeing to those of steroids - in my case, I don’t know if that’s the same for everyone. Not as strong a sense of wellbeing, perhaps, but the lack of inflammation clearly has effects on how we feel that many of us here, including myself, don’t understand. That, in turn, has the knock-on effect of giving us the encouragement to look after ourselves more as well.

As an aside, on the subject of biologics hitting our immune system, I can’t say that has happened to me yet. I’ve had a cold since taking them, but who doesn’t get one every winter? Other than that, I’ve had less mouth ulcers, for example, than I normally do (I’ve suffered with them since I was a kid). I DO have a blocked up nose all the time as a side effect, but it only really bothers me if I am planning to sing, and then I just take a tablet to clear it on that day.


#25

@Stoney @darinfan @Grandma_J @Jen75 Thank you all for your replies. Very thoughtful and balanced.

I also replied in other threads to @Grandma_J but I didn’t catch the underscore in her name before this reply. Sorry about that.


#26

Newly diagnosed with PsA but living with mild psoriasis for the last 30 yrs. The PsA has been getting progressively worse over the last few years affecting mostly my hands and one elbow. I see a Rheumatologist in about a month and will be giving Enbrel ( pardon the pun) a shot. The information shared here has really helped in my decision to try biologicals. Thanks to everyone for sharing the good, bad and the ugly.


#27

Good luck, Orion!!! Enbrel has worked great for me!


#28

Thanks Grandma_J, looking forward to the possible relief.


High tnf blood level?
#29

A lot of people are terrified of having their immune system messed with. I get that, but the truth is that our immune systems are huge and complex, and the biologics block/interfere with only one substance in the whole complex mechanism. That’s the beauty of taking a very targeted treatment. It’s like zapping the bad actor with a sniper’s rifle as opposed to wiping it and the whole neighbourhood out with a bazooka.

We have had nurses and teachers who work daily with germy people, and very few of them have commented on an increased tendency to catch the bugs that are going around.

Along the same lines as what @darinfan says, my move to biologics had a huge positive impact on my overall health as well. Because I had much less pain and fatigue, the biologic enabled me to get off the sofa and get some exercise, breathe fresh air, go shopping, plan and make nutritious meals, and generally enjoy life more. All of those things have knock-on effects. I like to think of biologics as enabling drugs: they enable you to do things that will further improve your health.

Was I scared before I started? Of course I was! But I was also scared of what was happening to me, my joints, and my quality of life. Pick your scared!


#30

I saw my consultant on Thursday and she is over the moon with the latest bloods, and how the biologics are helping. The downside for me is the constant bunged up and/or runny nose, which we have to sort out somehow as it is giving me something of a sore throat, and my mouth from the soft palate back is inflamed - which I hate more than the sore throat, to be honest, as it looks horrible and that’s not good for my hypochondria. But, other than that, bloods are fine. Life has been a bit crap the last few weeks in other ways, but sadly they can’t help in those areas!


#31

Sounds pretty good despite. Hope the rest of things can be sorted out for you.


#32

Finally got to the rheumatologist 2 weeks ago. After examination and x-rays of hands, feet and back, I’m officially diagnosed with PsA. The Doc discussed the various treatment options and instead of starting with biologics he prescribed Otezla. Suprizingly the approval process with my insurance company went quickly, about a week, and I’m on day 3 with the Otezla 28 day starter pack. I have already experienced significant reduction in pain in my hands and feet and my plaque psoriasis on my knees and elbows are clearing. I’m hoping this improvement continues. Only side effect so far has been slight nausea which is very tolerable. I’ll continue with progress reports. Very curious to hear of other people’s experience with this drug.


#33

I had what you believe was secondary effects from otezla. So I quit taking that. However it did appear to work at some level. I have been on what appears to be every biologic out. Blood tests indicate that Cosyntex works for me. I had good luck with taltz and Humira as well.


#34

I had a very bad experience on humira. Had to stop it immediately. I have MS in my family history and my rheumatologist missed that in my chart :rage:

I can say it was working great for the short time I was on it.


#35

Oh no, that’s awful. You finally got “there” and you were having good results when the doc pulled the plug.

Any plan B yet?


#36

No plan B at this point. I have to have another MRI in february to see what damage the humira did. :disappointed:


#37

Oh gosh @Vettegirl, very sorry to hear the issues you had with humira… I have a friend with MS, and it’s definitely no fun!! Here’s hoping that will resolve for you, and quickly, now that you are off the Humira (I seem to remember reading somewhere that Humira can set MS off, but symptoms often do resolve once off it, I do hope that is how it goes for you!!)

I still haven’t had a look at a biologic yet… have another rheumy appt in about a weeks time, will have to see how that one goes.

All the best!! And big HUGS to you!!!