Doc adding Hydroxychloroquine to my Remicade - anyone else on that?

Posted by pb50 @pb50, Jul 9 1:36pm

I am pretty well controlled with Remicade for 6 yrs after cycling through Methotrexate, Humira and Enbrel over the previous 6 years. I’ve recently had a few more flares than what is normal for me and he wants to add Hydroxychloroquine. The side effects sound dreadful. I particularly hate GI side effects.

What am I likely in for?

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@pb50
I have been on hydroxychloroquinine for 2 years this time. I also took it several years ago for 3 years. This time my doctor increased from 1 tab to 2 tabs daily. I always take it with a meal and have never experienced any side effects. (Although I'm reading here that others have constipation and that is an occasional problem for me)

I also agree that it took about 6 months to feel a difference with (plaquenil). I take the field vision eye test with an annual eye exam. I am on (12) prescription drugs and this one has not been an issue.

I really agree with the info on these posts! And, wishing you well in the ability to cope and transform! I believe that's what autoimmune illness has given me, 2 superpowers (!)

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Profile picture for jw9 @jw9

@pb50
I have been on hydroxychloroquinine for 2 years this time. I also took it several years ago for 3 years. This time my doctor increased from 1 tab to 2 tabs daily. I always take it with a meal and have never experienced any side effects. (Although I'm reading here that others have constipation and that is an occasional problem for me)

I also agree that it took about 6 months to feel a difference with (plaquenil). I take the field vision eye test with an annual eye exam. I am on (12) prescription drugs and this one has not been an issue.

I really agree with the info on these posts! And, wishing you well in the ability to cope and transform! I believe that's what autoimmune illness has given me, 2 superpowers (!)

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Thank you so much!

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I took it for 12 years without any side effects and it worked for me for RA in about two weeks
The one thing I would add is that make sure the eye doctor that does your 6 month exam is very competent and has the currant equipment to do your checks.
That was not the case for me and I now have eye toxicity that I caught very early, so no longer can take it. I don't really notice any difference in my vision at all so whatever toxicity I have must be very mild.
My daughter started taking it after failing MTX. and it is working really well for her and she marveled how much better she feels on it than she felt on MTX.

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Profile picture for pb50 @pb50

That is encouraging. I also have microscopic colitis and on a specific steroid for that - and after a horrendous period to get that diagnosis and treatment, I am very cautious about any drug that has intestinal side effects. So very good to hear that you did not.
Thanks!

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Glad I was helpful

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Glad to be of help. With meds I always ask myself, whatever COULD happen if I take them, what's LIKELY to happen if I DON'T ?Answer; I go take the meds. The only source for the best probabilities of side effects: THE PHYSICIANS DESK REFERENCE, which actually tells you the percentages of patients that get a specific side effect, but be prepared for medical language... Get a good medical dictionary.

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I been suffering with RA since December 2000. Took 1.5 years before they knew. Bloodwork galore. I was taking 12-15 of alleve. They put me methro/plaq which is typical. Made me too sleepy. Plaq was concerning bc of vision side effects. My Mom in 2005 saw a ln ad on Humira. Asked him if I could switch. The RA doc weened me off the methro/plaq stated the injections 2005-2016. Worked wonders. Been on an oral named Xeljanz since.

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Profile picture for delmar007 @delmar007

I been suffering with RA since December 2000. Took 1.5 years before they knew. Bloodwork galore. I was taking 12-15 of alleve. They put me methro/plaq which is typical. Made me too sleepy. Plaq was concerning bc of vision side effects. My Mom in 2005 saw a ln ad on Humira. Asked him if I could switch. The RA doc weened me off the methro/plaq stated the injections 2005-2016. Worked wonders. Been on an oral named Xeljanz since.

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Yea Humira was my first real drug, excluding the prednisone and methotrexate the insurance company made them try first. I stayed on mtx and added humira - like for you, it was a miracle drug for me. Two -three years later my liver enzymes started spiking from the level of methotrexate i was taking. And as they reduced the amount of MTX, i developed antibodies to Humira.

So.. switched to Enbrel. It worked fine. Switched MTX to injectable to bypass the easy path to the liver. That worked for several years until it didn't work any more.

And now I am on remicade for six years. Still working pretty well but Doc wants to add a new drug.

It’s a journey

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Profile picture for pb50 @pb50

Yea Humira was my first real drug, excluding the prednisone and methotrexate the insurance company made them try first. I stayed on mtx and added humira - like for you, it was a miracle drug for me. Two -three years later my liver enzymes started spiking from the level of methotrexate i was taking. And as they reduced the amount of MTX, i developed antibodies to Humira.

So.. switched to Enbrel. It worked fine. Switched MTX to injectable to bypass the easy path to the liver. That worked for several years until it didn't work any more.

And now I am on remicade for six years. Still working pretty well but Doc wants to add a new drug.

It’s a journey

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I see. I told the doc let’s ween me off MTX. So for a month I only injected 2x a month while on MTX only had him dismiss plaq. Then only Humira for 11 yrs. Now on Xeljanz 8-9 yrs. I’m sorry to hear how the antibodies (I call friendly fire) built up! Do you mind if I ask what year you got struck w/RA?

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Profile picture for dkelban @dkelban

Glad to be of help. With meds I always ask myself, whatever COULD happen if I take them, what's LIKELY to happen if I DON'T ?Answer; I go take the meds. The only source for the best probabilities of side effects: THE PHYSICIANS DESK REFERENCE, which actually tells you the percentages of patients that get a specific side effect, but be prepared for medical language... Get a good medical dictionary.

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Thanks!

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Profile picture for delmar007 @delmar007

I see. I told the doc let’s ween me off MTX. So for a month I only injected 2x a month while on MTX only had him dismiss plaq. Then only Humira for 11 yrs. Now on Xeljanz 8-9 yrs. I’m sorry to hear how the antibodies (I call friendly fire) built up! Do you mind if I ask what year you got struck w/RA?

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2012… very bizarre and acute onset. Went from fine to not being able to open a door or a bottle of water within a couple of days.

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