Would you....

[ouchyk]

Continue taking a medication if you thought it was making your psoriasis/psoriatic arthritis worse?

Just wondering....

Karen

[JesseLou]

No. At best worsening symptoms would mean the drugs were doing nothing and at worst it would mean the drugs were causing a new problem. These drugs are risky, and if there is no benefit, there is no reason to take the risk.

Hope your meds are working for you, Karen.

[alli]

A big resounding NOOOOOO!!!!
However, I'm always amazed to read on these boards that people continue to take their meds when they feel like they were getting worse just because they're doctor prescribed them. I'm not going to attempt to find the post, but someone wrote on these boards that he couldn't believe that his doctor kept him on enbrel for 6 months when it clearly didn't work for him. When I read that, I remember thinking.......who was taking the enbrel-you or your doctor???
I sometimes wonder whether people have a working relationship with their doctors or a slave attitude?

[ouchyk]

Thanks Jesselou,

Humira is working however after 5 days it quits dead and my flares are becoming more predictible...as in I know whats going to happen on day 6-9 so I'm dosed closer together.

I wonder if I'm the only person whose joints turn red and swell? They get red hot..I went to my rheumys office a few weeks ago so he could get some synovial fluid out of my elbow(s ) but he was booked solid according to the gal at the front desk, :rolleyes: it's left me with a hard pointy elbow, something is " in " there...I go back in a few weeks so I will have him check it out.

Not sure where to go next or if I want to stay this course, the higher the dosage the higher the possible side effects.

I have a cold, not sure if it is a coincidence or not but my joints are fine, my pain level is a 1...could be that I just injected on Monday but as a rule even on humira I can tell I have PA...today I'm fine... :confused: Not complaining, maybe I should have a continual cold..

Is limbrel (sp ) helping your husband at all?

Thanks,
Karen

[ouchyk]

Alli,

I agree that it should be a partnership. It's like any other relationship. I'm glad that I make decisions " with " my dr...I feel you need to have all the information you can possibly have before hand and if it's not working, move it along if you have options. You have to be comfortable in YOUR OWN personal health decisions, it's ultimately YOUR choice.

Now tell me what to do lol...( kidding )...

Karen

[easydoesit]

My joints look more purple than red when they swell, but yes and they get hot. This is usually only in my fingers though, which seem to be the most active spots for me. The swelling in my other joints tends to be less acute and more of a gradual thing.

Perhaps you have bursitis in your elbow? I think that can make elbows red and pointed looking.

[ouchyk]

My finger joints take on a purpleish/bluish hue as a matter of fact my rheumy told me that was something PA does..and I get that in the middle joints of my fingers.

The other joints and soft tissue areas, wrists, knees elbows & ankles get brilliant RED and almost shiny...I can't tell if my lumbar spine takes on a color or my hips or if they swell..I think they do or at least I will blame my big hiney on that haha..I believe my hips are mostly bursitis of the greater tronchea ( sp way off I'm sure! ) it's on the outside of my hips where they connect to my leg. Cortisone works really nicely for that. I've also had swelling right smack dab in the middle of the back of my hand with a huge lump that is red red red... :confused: Dr said it was soft tissue inflammation. Odd place to have inflammation!

Thanks for the insite...the elbow could very well be bursitis, it's gone down, it was large... however there is something " hard " in there...doesn't hurt just weird.

Sox are at Camden Yards...Baltimore has " black sox " on thier uniforms for some reason..

Karen

[1WeekAtATime]

It's funny that I am a P and PA patient who also sees a psychiatrist- there's a lot of overlap! Slow down for a minute, and ask yourselves these questions: are you having any additional problems outside of the problem you're being treated for? Do you feel as though this may be a flare-up that needs to be petered out with longer use of the medicine or a larger dose?

Be careful about starting and stopping medicines like these. Although Remicade is really the worst, it's possible that your immune system will reject the medicine next time you try to use it. You never know- this may be how the medicine actually works in some people- everyone's biology is different, and you must always ask your doctor first. After all, unless they're being driven to prescribe by drug companies, which is just plain corrupt, they prescribe medicine based on their extensive schooling and new updates on the nature of medicines that they prescribe, which they are required by law to know about, and which come from labratory settings and volunteer tests.

[ouchyk]

Hi,

I'm not quite sure how to address your questions. :confused: I am on a higher dose of Humira or dosed at closer times due to weekly flare ups.

I have been on Humira for 2 years now and never missed a dose.

Karen

[RichJ]

hi karen,
hope you are doing good. any of the meds that i have been on that made my problems worst. i wanted off of and did. my derm had me stop raptiva and i was hoping nothing was going to happen but it did. he said nothing would happen. what was i to do. that is why i we never go back to him not even for all the money in the world. great thread

have a good day my friend

richard

[ouchyk]

Rich,

You did the right thing....What can you do about the raptiva? Not like you yourself can RX something while you got off.

I'm hopeful that the remciade will be very helpful for you.

Hang in there,
Karen

[RichJ]

hi karen,
thank you my friend. but i do blame some on my self for not trying to do some thing to stop what happen to me. i had alot of friends tell me what might happen and it did. i just hope it never happens to any one else. thank you my friend for caring

have a good day all

richard

[Mybadgenes]

Hey Karen....

I have always had blind trust :cool: in my doctors. But that is not what you are asking is it? There is a difference in my response to medicine and what happened to me :eek: and whether I MYSELF would continue to take it isn't there?

Would I continue to take a medication if I thought it was making me worse? I did...but any and everybody could SEE that it was making me worse...eventually even the derm. :( I will make a positive statement now and say NO, I would not. Maybe that is why my C-Reactive Protein is so high right now....not enough meds but I am in limbo.

You must be suffering....gentle hugs,

Juanita

[deemah]

That is a good question, Karen, and I had to think about it for a few days. There are some medicines that may make your P worse before they start working to make it better. If the med only made it slightly worse initially, I would keep using it for a reasonable amount of time, then stop using it if the P was not getting any better. But if it made the P absolutely horrible from the beginning, I would stop using the med immediately.

Ruth

[ouchyk]

Hi Ruth,

Good point with psoriasis, I guess there are cases that get worse before they get better, I would guess that depends on the medication/treatment...

With Psoriatic arthritis I know it can take up to three-six months to hit efficiency with some medications...and then of course there are those who flare thru ( and I believe you can with any of the treatments ) and then there are those who do so well after a few treatments...and some whose treatment loses efficiency after a while. What the heck is up with that? We have really smart bodies eh?

J, I don't think it's blind trust at all! Like me, you have great trust in your doctors, that's so very important to establish that type of relationship...trust is the cornerstone in any relationship... None of us are in the feild of rheumatology or dermatology that post here that I know of. You do your homework, I've seen you! And how many folks have other disorders/diseases/health issues to go along with P/PA? Can certainly make for a challenge for us! I hope that your C-reactive goes in the other direction and something can be found to help you that is in your comfort range..

Ah well. I'm doing okay, need rest lol...I've been on the go-go-go for a while now and I'm 6 days out from my shot and I can tell...

Karen

[LoriASoCal]

Karen,

You are not the only person whose joints turn red and swell prior to your shot. This happens to me prior to my infusions. Well the alternative is for them to be red and swollen all the time? Not sure but I'm not going to take that chance until it doesn't work at all or until something better comes along. Maybe it's time for you to switch to remicade? I hope things improve.

[pgerpup]

Hi Karen!

I have to say that if I thought it was making me worse, I would stop taking it. I was sure the Enbrel was stopping me from healing when I had the abscessed tooth in July. I stopped taking it. I had a really nasty flare in my hips, but I waited until I was sure my tooth was in the past before I started back on the Enbrel. If I started having more pain in my joints then the Enbrel could relieve, I would consult my doc and if I wasn't satisfied with the answer, I'd talk to another doc. Have you had an MRI of your joints? It sounds as if your PA is progressing beyond the help Humira can provide. I'm so sorry. What will your next step be?

Hope you will be feeling better soon. How's the cold?

Fay

BTW I have swelling and heat in my finger joints too. Even with the Enbrel.

[ouchyk]

Hi,

I've had MRI's xrays PT orthopedics..the whole sha-bang! I'm doing much better today, I think I needed a good rest from vacations. :p ...and the Humira is helping too.

I really wish none of us had pain, I'd love to stomp it off the face of the earth! Confident we can flare thru anything..Glad your a bit better Fay.

Karen

p.s. The cold only lasted a few days * whew * but my poor MIL is still sooooooo sick.

[anaxarete]

Id personally stop taking it, because im on so much medication i'll sit there thinking "Well, if its counter-acting half this stuff, im just wasitng money"

[Cheri P]

I am taking Prednisone for IA (Inflamatory Arthritis- Rheumy said it will be two years before he can tell if it is Psoriatic or Rheumatoid- if then). Hooray, I can now move my hands without pain and my palms have cleared for the first time in eight years.

But I got a few new plaques, and lots of guttate spots. The Derm and Rheumy both said the flare could be be from the prednisone and hinted I might want to stop, but I've got osteoarthristis in my back and hip and can't use my canes if I can't use my hands- I'm in a wheelchair then. I'm on antibiotics in the meantime in case it will help my flare.

So the med is greatly helping the IA but aggravating the P. Since I care more about being able to walk than how my skin looks, I'm staying with the medicine as long as I can. But if things get really bad... Everything's a trade-off with this stupid disease.

Cheri

[LoriASoCal]

I understand your point completely. Sometimes it's the lesser of two evils and the time we spend trying to figure out which is which.

Take care.

[Ihurt]

Alli,

I agree that it should be a partnership. It's like any other relationship. I'm glad that I make decisions " with " my dr...I feel you need to have all the information you can possibly have before hand and if it's not working, move it along if you have options. You have to be comfortable in YOUR OWN personal health decisions, it's ultimately YOUR choice.

Now tell me what to do lol...( kidding )...

Karen

This is called BREAKTHROUGH PAIN.
Maybe MXT needs to be added? I know my doc doesn't like to take me off something once it HAD worked, and then stops. He adds something to jump start it, and then the second visit if it's still not working, he takes me off. he's very conservative and sometimes thats a good thing lol

Feel better!

[tmartha]

Glad you were feeling a bit better on your last post here, Karen - hope to hear more from you. :)

[caleb]

I mean, if I were taking say insulin for diabetes and I thought it made my pa worse, I would have to continue it. But if you're talking about a treatment for PA, I think doctors are wrong more often than they are right. I had to fight with my doctor over taking the Naproxen, which is the most effective medicine for me, because he wanted me to take something completely ineffective that was gentler on my stomach. He said, "I'm going to keep you on the Celebrex." I told him, "Excuse me? Don't you mean that you are going to advise me to take the Celebrex, and then defend your position with soundly reasoned evidence?" Then I reminded him that Naproxen was available without a prescription, and I would take it if I wanted to.