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Living with Psoriatic Arthritis (PsA)

Afraid of biologics


#1

I am scared to death to start Humira. I’ve filled out all their forms for discounts and what not but haven’t been able to pull the plug and place an order.

Sulfasalizine is working ok but rheumatologist thinks i could be better so she suggested Humira.

My question is has anyone tried cats claw? I’ve read it works like a TNF blocker?


Newbie Me involved with Metho..please suggest
#2

Hi @Vettegirl! I haven’t tried cat’s claw. But from what I’ve read, the studies that were cited were fairly short term. My impression is that it might have anti-inflammatory effects, but that doesn’t mean that it will impact joint damage.

The biologics are targeted, and most people do very well on them. I’ve been using Enbrel for (I think) 5 years now, with no problems from it. I’ve had improvement from my baseline, and it’s still doing well enough that there’s not a good reason to consider switching. Biologics are proven, over the long term, to slow joint damage. I don’t know that I would want to try something like cat’s claw. I could see using alternative medicine, herbs, etc, to support my system, but not in place of meds that are proven to work.


#3

Time was I would have run a mile rather than take ‘big drugs’. Humira, however, has been no trouble whatsoever & has helped me tremendously.

I’ve heard it said that taking anti-inflammatories for PsA is like throwing a bucket of water at a forest fire. Worth doing is nothing else is available but … PsA is a potentially destructive, disabling disease and it is progressive. The biologics have changed the game to such an extent that there probably aren’t nearly as many scary PsA damage photos on the internet as there were 10 years ago. I hated those photos but at least they were a wake up call.

If cat’s claw is safe, then you might as well take it. But it won’t tackle the disease head on. My view is that whatever you decide, you should do so with your eyes wide open, so we just have to tell it as we see it.

But as Stoney says, Humira is ‘targeted’ at a small part of the immune system and it does seem to be pretty safe. I’ve been taking it since 2014 and I’d say my overall health has improved, let alone the PsA. Raging inflammation is not at all safe however, it’s bad for the whole person, not ‘just’ joints.

You may have got more than you asked for here. But please tell us more about how you’re feeling. It is not an easy decision.


#4

Hi Vettegirl! I’m sure almost everyone is afraid of the biologics to some degree…I think the moderators here can remember when I joined this group exactly 4 years ago. I wouldn’t take any of the meds, especially SULFAsalazine. My rheumy had me talked into it until he mentioned he’d have to check my liver every few months. No way was I going to risk harming my liver.
The mods here set me straight real quick when I said I wouldn’t take any of the meds.
It’s like dejavoux (sp?) reading your discussion you sound so much like me.
Anyway, I ended up facing my fears and went on Enbrel 3-1/2 years ago. It was, to me, almost like a miracle how much better I felt and it continues to work. I dread the day it either stops working for me or when I retire if Medicare won’t cover it. I think it’s safer than sulfasalazine and I have no SEs. I understand your fear, but I think your rheumy has good advice!
Good luck! :slightly_smiling_face:


#5

I am happy to hear Enbrel works for you as I am about to start on that soon but had lots of reservations and at first scared to agree with my Rheumy.
But my pain is at its worst lately so I have high hopes it’ll make my pain bearable and slow further joint damage!


#6

Like Sybil and GrandmaJ, I’d have run a mile to avoid the pharmacologic “big guns”. And to be honest, I’m still kind of scared of them, after three years of doing extremely well on them, without any side effects.

But here’s the thing: when you’ve got PsA, you need to be scared. It can be a mild disease, but it can also be aggressive and destructive. I’m a case in point. Undiagnosed, and then conservatively treated PsA (that is to say with conventional DMARDs) has left me with two knee replacements, one hip replacement, one hip that is on its last leg, and two feet so badly damaged that I will never walk normally again. Now THERE’s something to be scared of.

Where PsA is concerned, I would take the most aggressive treatment that my rheumatologist is prepared to prescribe. I’d be too afraid of what might happen if I didn’t. Besides, life’s too short to feel like a piece of dirt and biologic therapy quite literally gave me my life back.


#7

:thinking:


#8

@Seenie Your words echo what I feel! I am scared but willing to take whatever my Rheumatologist is recommending so I can continue to be functional as I am only turning 40 this year and my left elbow, left knee, neck to my lower back hurts. I do not want to wait until I cannot move and function as a person or do my job as a nurse because I did not take my chances on these treatments despite their side effects.


#9

I’m in the same boat…waiting for confirmation of patient assistance for Humira. And yes, terrified of all the possible side effects. And also afraid that the Humira won’t work. But my quality of life is so degraded at this point. I rarely go out of the house, and if I do, I pay for it dearly the next few days with even more pain. I never have a good day anymore, and the depression, fatigue and stress overwhelm me. So at this point I’m hoping for any decent quality of life with the help of a biologic. Please let us know how you do with the Humira, and you’ll have lots of support here!


#10

I’m still waiting for insurance approvals but will let you know how it goes .


#11

Seenie, you (and Grandma_J, and lots of others) really put things into perspective regarding the long term of this nasty disease. Thank you for being honest and forthright. :heart:


#12

I was nervous about starting on Enbrel about 4 years ago.

Any worries I had were blown out of the water when my rheumatologist told me of all the other things uncontrolled inflammation affects, other than your joints and that by taking the drug, I was not only reducing damage to my joints, I was also reducing my overall risk of heart disease, cancer, diabetes to name a few. Was fairly sold after that!

4 years on and it’s been an absolute miracle drug, hope yours works for you too :slight_smile:


#13

Good to hear!


#14

I was afraid too. I’m so glad I did take it now. What a difference it made!


#15

Hi, I have been there. I was diagnosed about 18 months ago, shortly after having prostate cancer. Doc started me on Otezla which help some. But last fall I got bad. Doc said I was going to have to consider biologics. He knew my fears because I had had cancer. He pointed me to some knew studies and those along with some support here, I started Enbrel about three months ago.

Some days I still feel like i made a deal with the devil, but I think the research now supports a much lower much of serious side effects that was believed before.

It’s an issue you have to feel comfortable with before you start biologics, if you don’t the anxeity may outway the benefit of the drugs.


#16

It is in your best interest of no other methods are effective to do so. I have been on various biologics for 3-4 years. Nothing to be afraid of.


#17

Thanks. I’m moving forward with it.


#18

All the best with the Humira!! Do let us know how you get on with it!!!
I haven’t qualified for a biologic yet but am hoping at my next appt. (this Friday) we might be able to either look at it or take the next step towards one… I’m tired of hanging around taking heaps of meds that just are not that effective for me :smile:


#19

I’m glad to read this thread and to hear about all of the positive, even miraculous, responses to Humira and other biologics.

I have been afraid to try Humira, even though methotrexate and celecoxib don’t keep me out of pain. Right now I’m supplementing my meds with physical therapy, Ai Chi in warm water, myofascial massage and heating pads. I am finally out of the danger zone with pain but still have a ways to go to be always at a 4 (This is concerning but I can still work) or 5 (Bees?). 6 (Bees!) or above are no good for me.

Part of my resistance is, of course, the possible unknown side effects. Another part comes from an acquaintance who was on Humira and got an opportunistic brain infection from cheese (Listeria). She ended up in the ICU. Of course, the docs won’t even consider a biologic for her now. Does anyone know how common these opportunistic infections are with biologics?

I hear you that biologics might be the ticket for me for less pain, less fatigue, and less damage to the body. I am glad I am trying the less expensive and seemingly less risky methods first, but I wonder what you would advise.


#20

What’s funny is that methotrexate was far more troublesome for me, and far less effective, than Enbrel.