Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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ThisToo 09/09/2016

I have been only on Prednisone, Plaquenil, and Motrin for 5 years now since dx. I had Hep C/Liver disease and finally am cured. That is reason I could not take DMARDS b4.

so now , which is the whole reason he talked me into the treatment for my liver , I am technically cleared to start. Simponi is what he wants me to try. I asked why that one and he said b/c it is less times to get infused and only 30 minutes each time.

I have read just a bit of the possible side effects. He told me if I am scared, that means I've been paying attention. ( He also said if I read the same things for Motrin, etc, I'd also be scared) He says it that way to lighten my mood and fear which I do appreciate.

but I remain very scared. things like skin cancer which I already have, way too often, and respiratory infections which have been more frequent with me already , lately ............and I am such a big baby.

but he knows and I know how much pain and suffering I have every day. He said he wants to be able to see me not suffer so much that I grimace when I see him coming toward me to do my 3 month exam on my joints. ( again I do enjoy his light hearted humor ) Are any of you on it ?

thanks

WarriorGal 09/09/2016

Hi. I am not familiar with Simponi. Been on several biologics, but never that one.

understand your fears but what about the side effects of prednisone and plaquinel? Nothing and I mean NOTHING is without side effect. Personally I would much rather tea a biologic than prednisone. I also had Hep C and am cured for 2+ years now.

I am not sure of plaque or prednisone do anything to stop the profession of RA. For me, already CRIPPLED and deformed by RA, the biologics are a god-send. I was in remission for 6 years on Orencia. Enbrel and Humira also helped but each stopped after about 2 years. RA is a dangerous disease and one not to be taken lightly.

MarleneJ 09/09/2016

I was on Simponi for about 8 months in 2014, and it worked really well, with no side effects. Till I moved and I think the stress made it fail.

I will say, why won't your doctor let you take the monthly shots? That is so much easier than infusions, you don't have to go anywhere, or sit for even 30 minutes.

I am wondering if Arava is the other drug your doctor mentioned. I've been on it a year, and luckily no side effects. But not as strong as I would like.

Glad you are over the Hep C and can take the better meds. And don't worry about side effects. Deformities are the result of being undermedicated and those are assured. 100% you will get deformities if you do not take the stronger meds. Cancer and the like has a very, very low probablity, on the doses we take for RA.

I've been on this med game for 16 years now, and I don't even care what the side effects are anymore, compared to RA. I hope you never get there!

ThisToo 09/10/2016

Thanks to you both. Warrior Gal, I thought your name was familiar. Back in the days when I used to read the Hep C forum but did not have much to say since I was not on tx. So glad I waited though, for the 'better" tx. I had Solvadi and Riba and it got rough for me b/c of the anemia but so grateful , still. As for the plaquenil , my hair has suffered alot which sounds stupid but I mean, it's BAD. copper/unearthly colors and thin yet fried.....from that drug. And then prednisone, we all know how bad that is, yes. And AFAIK, neither does anything to slow progression. Just eases stiffness basically I think.my fingers are definitely shaped badly now, and my toes, too....they are growing sideways on the left foot. Not sure if that has to do with RA but it looks scary. The doc does not seem to worry about the toe thing at all. I wonder, does he hate seeing old lady feet or is it really nothing to worry about ?
I sort of jest b/c I'd lose my mind if I did not.

ThisToo 09/10/2016

whoops, I meant to say , about the one he wants me to take.......there are many variables for my particular body , as RA is not my only disease , and my other non RA meds, things like that. Um, I think the realitivly few infusions are ok with me. Are infusions hard to go through, physically , compared to injections ?

journeythru 09/10/2016

Hi, Thistoo, I was on Simponi Infusions for about eight months. After month four, it worked for one month. I did have an increase in bronchial problems, but I'm susceptible to that.

The Infusions didn't hurt at all. I never felt sick or any discomfort, etc. The one time I got dizzy after the Infusion was my fault because I didn't eat enough before the Infusion. I find Infusion less painful than Injections.

The day before and the day of, drink a lot of water. It's important to stay well hydrated.

Everybody is different. Simponi may work well for you. I hope it does, so you can get out of pain and stop the progression.

ThisToo 09/10/2016

thanks for your reply, Journey. I appreciate that. I dread thought of sinus etc, problems; I do suffer from them enough as it is and I get quite uncomfortable to downright miserable when it happens. I am slightly afraid to ask you, why you stopped Simponi ?

journeythru 09/10/2016

So, remember, you might not have the same bronchial problems that I did. I know people who did well on Simponi. I hesitate to give feedback because we are all so different, and we can have such different experiences. That's why I always say talk with your doctor. I understand wanting feedback from others who have similar experiences. I stopped Simponi because it didn't work for me. I've been waiting for the Insurance company to complete the denial game that they always do. In fact, they just sent me a letter that my appeal has been accepted, so I can start Orencia. My pain is off the chart because I've been off a Biologic since Febuary, just MTX.

californialynn 09/10/2016

Let's put this in perspective.

Here are the stats on the probability of having the following side effects:

Respiratory

Very common (10% or more): Upper respiratory tract infections (nasopharyngitis, pharyngitis, laryngitis, and rhinitis) (up to 16%)
Common (1% to 10%): Bronchitis, sinusitis
Uncommon (0.1% to 1%): Lower respiratory tract infection (e.g., pneumonia), asthma and related symptoms (such as wheezing and bronchial hyperactivity), interstitial lung disease
Rare (less than 0.1%): Tuberculosis

The glass is either half empty or half full. To be clear, the stats show that 16 out of 100 people taking this drug may have rhinitis.

That means that 84 out of 100 taking this drug will NOT have rhinitis.

That should make you feel a LOT better.

ThisToo 09/11/2016

it should ! :) thanks, I will concentrate on glass half full.

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