Biologics

General Medications
21

Sorry, tntlamb, :-( I'm a negative Nancy! The doc I saw today said I had to do this in my own time, and that was okay. I don't like others making decisions about my health, unless it's an emergency and I need their help pronto.....if it's something I can say, I can deal with this--I never feel perfect, but I always look forward to better days. Now it has come to not being as much afraid to be on meds which are expensive, have to be constantly monitored by a doctor (I hate appointments), etc., as I'm afraid of what the disease has started doing to me. I'm probably annoying to some/most of you guys, but there are others among us who don't want to be on constant meds. The doc showed me some random pics of past pts who wouldn't take any meds. The deformities were horrendous--hands that were totally destroyed! I can tell you, I'd never let it get to that point. I have joint/muscle/tendon pain and a little permanent damage/annoying psoriasis 12% of my body, a couple crippled fingers and weird nails. It's time for me to do something. But, thanks for your support and encouragement--it really helped me make the decision.

tntlamb said:

I have got to Grandma J, say this is the perhaps the first time I have ever heard that despite the known fact treatment is effective in keeping 90% of folk up and moving someone continues to refuse treatment because it might not work.

Martibot is correct about 10% of folks do go into remission (most of those are men) So have got to say it makes absolutley no sense to me to continue in the folly you maybe in the 10% who won't need treatment instead of the 90% who do.

So you might have to change your meds along the way, so what? I change my socks too. Its a part of life. PsA is not going away. Its a part of your life. Incidentally, It isn't only about pain. Its about function. Some peple do have pain, bot they are able to live life, something you have a tough time doing on the couch when your joints are gone, your heart goes flooey, and the costo has control of your chest making it hard to breathe.>

22

Its about time for Seenie to pop in and tell you her story about mild disease...... Course I could tell you mine. You are not however annoying, we all take a different route on our journey. Just keep in mind I won't stop, because I do care. I can see you might be a tough one if you didn't fold after seeing the mutilans pictures. You can have very severe damage and not see it coming, or stop it in time says the man who started treatment six years ago and has had one of six required joint replacements. AND I knew better........ Hang in there we are with you.

23

Did I hear my name? LOL Yes, Grandma, we’re with you. I’m a bit of an evangelist here for early and aggressive treatment, as you probably know. I came to this view the hard way: I had a rheumatologist who was convinced that my case was mild, and refused me biologic treatment because, according to her, my disease wasn’t severe enough to warrant it. Meanwhile, my friends here (in the most diplomatic way, of course) encouraged me to seek treatment as aggressive as I could get it. I trusted the rheumatologist. Well, after a year of DMARD science experiments, both hips crumbled (my knees had already been replaced). At that point I sought a very specialized second opinion. They said that, regrettably, my damage was very severe. They put me on Enbrel asap. But it was too little, too late. I have had one hip replaced, another needing it, and my feet are irreparably damaged. (“Terrible” was the adjective the specialist used yesterday.) I just saw the foot surgeon (again) yesterday, and this time he talked about debridement, cadaver bone grafting, steel plates and 3-6 months non-weight bearing. That is, if the rocker bottom soles which are going to be cemented onto my industrial-strength orthotic equipped combat boots don’t help.

And that’s why I’m a proponent of people seeking treatment as early and aggressive as they can possibly get. I played roulette and lost. A lot.

Don’t want to scare you … but, OK, this can be a scary disease.

24

I’ll be very honest. Before anyone need read any further, this discussion has made me very angry, so all are forewarned.

I can’t read this and not be angry. We have a disease that absolutely, positively, and without a doubt WILL get worse. Pain is the very least of it. We lose our ability to, not only, do the things we like to do, we also lose the ability to do things that we need to do (like change our socks). Imagine not being able to get yourself out of bed, or bathe yourself, or to even walk. Imagine simpler things, like holding a spoon or a glass, or, as Lamb mentioned, breathe. Imagine four joint surgeries in your life, including the year long recovery for each to get back to baseline. Imagine having more surgeries than that in your lifetime. Imagine your heart failing so that it no longer pumps blood sufficiently and the consequences, which are pretty horrible: not being able to breathe, carrying fluid where you shouldn’t be, not being able to breathe… So what makes me angry is this: why on earth would someone choose that life when they could avoid it? It makes absolutely no sense to me.

If you don’t like doctors visits, then I don’t know what to tell you. Either way, get ready because they are in the cards. You can choose to be well and just get check ups and medication management or you can choose the other route. I can guarantee that a poorly managed PsA patient is going to spend a whole lot more time in the doctor’s office than one who isn’t. I have been there, and it is not pretty. It is some of the worse suffering I have ever experienced, and I have never been more terrified. You think I’m doing poorly now? Well, you should have seen me then.

I’ll say it again, one of the things that drives me crazy about sites like this is that new patients and old, complicated patients hang out here. So, new patients who are impressionable, and just beginning treatment get to see all of us “worst case scenario” patients who the meds don’t work for, or have weird issues with the drugs. Who you never see here are the MUCH LARGER population of people who get their injections, see their doc every six months for a check up and labs, and then leave and go play professional golf or climb a mountain or something.

This disease continues to try to steal my life from me, and I continue to beat it back. It will do the same to everyone else, so I’m not really special, but I just don’t get it. We can either live (bios, dmards, NSAIDs, routine exams, labs, etc) or we can deny that we are sick. I won’t belabor the consequences of that again. I just can understand why there is a choice here.

Please KNOW without a shadow of a doubt that I don’t dislike you. This is a really tender spot for me.

25

I am sorry Grumpy, I know this is very painful for you. You have had a long and winding road and more to come. But you are a fighter and you will rise to the occasion.

Grandma J Grumpy is right. With PsA you either deal with this with deformities or choose to deal with it before the deformities start. You, unlike some here, are lucky to have a choice. Don't blow it.

What we have learned so far:

Fear the disease not the meds.

Accepting the disease is when you start to get your life back. Some say fight the disease. I say accept it and get on with your life. A lot of us spent too much time trying to pretend we did not have it and lost precious time.

Every day will have pain. What else it will have is up to you. Get out and find it.

Take your meds, do your exercises and eat properly, every single day. Be grateful you can and pray you will be able to tomorrow.

Now kiss and make up. The monster we need to fight is PsA, not each other. We need each other too much to fight the beast.<3

26

TNT, grumpy, seenie and Michael: I'm sorry if I made any of you angry. I didn't mean to at all. Before I joined this site I had no idea how severe the disease could get. I sincerely apologize for upsetting you. I want to be friends on here, and all of your advice, warnings and encouragement have helped me and changed my attitude about the disease and how I need to accept it and do what's necessary to help fight it. I was just not being very rational--thinking I could somehow just tough it out on my own without doctors or meds. I'm hopeful that the enbrel will be approved and my labs come out OK so I can get started asap. Please accept my apology for seeming insensitive to those of you who have been hit so hard with the disease.

michael in vermont said:

I am sorry Grumpy, I know this is very painful for you. You have had a long and winding road and more to come. But you are a fighter and you will rise to the occasion.

Grandma J Grumpy is right. With PsA you either deal with this with deformities or choose to deal with it before the deformities start. You, unlike some here, are lucky to have a choice. Don't blow it.

What we have learned so far:

Fear the disease not the meds.

Accepting the disease is when you start to get your life back. Some say fight the disease. I say accept it and get on with your life. A lot of us spent too much time trying to pretend we did not have it and lost precious time.

Every day will have pain. What else it will have is up to you. Get out and find it.

Take your meds, do your exercises and eat properly, every single day. Be grateful you can and pray you will be able to tomorrow.

Now kiss and make up. The monster we need to fight is PsA, not each other. We need each other too much to fight the beast.<3

27

Oh Grandma J I am not angry with you and I am your friend. I know it is very hard to come to terms with PsA and to learn to accept it and the challenges it makes. You are more than welcome for any information and support you have gotten here and I look foreword to working with you more in the future. Then you can pass it on to other members! That's how it works.

Have you read the book Seenie recommends "The Facts: Psortiatic Arthritis" It is informative and easy to understand.

28

I hope that people realize I get angry because I care. That is my role in life: mother, wife, nurse, highly paid and acclaimed moderator…



We only get to hem and has for a little while before the crap hits the fan, and sometimes we need a reality check to get moving. I’m raising three boys, so I’m also good at that.

29

Thank you for your gracious apology, Grandma J, but no apology is needed. I wasn’t angry with you, but I did want you to knowww a bit more about the adversary you are facing. Nor were Grumpy and Michael.
Some of us here on the board have PsA that is controlled and limited. As Grumpy says, they don’t generally spend a lot of time here – they are busy at work, hiking somewhere or playing golf. Others of us, though, have had our lives and bodies completely rearranged by this disease. Some of us have suffered greatly because of misjudgements, either our own or those of others. What we are saying is: be careful. Don’t underestimate this disease. Early and aggressive treatment gives the best prognosis. Fear the disease, not the drugs. We want the best for you, because you are our friend.

30

Grandma J, I’m so very glad you have finally decided to make the plunge, and that our support and information has helped with that decision.

The decision is difficult for everyone, though it can sometimes be hard for those of us who had a brutal onset with multiple complications to understand the hesitation of those with a more gradual experience.

I hope you have the marvellous experience I have had with biologics - excellent disease control, vastly improved quality of life, very little pain, and significant REDUCTION in infections (yes, you read that right).

I appear to have disease complicated by IBD and possibly some organ involvement, which show their head during flares that i get underlying the treatment (but I out myself in harms way that probably causes these flares). Even with this, the biologics have given me back my life.

And I can verify what Grumpy says - when my disease is well controlled, I take an injection once every two weeks (Humira), occasionally turn up for blood tests, and see my doctor once every six months.

When I have poor control or some terrible underlying flare, I’m in the eye doctors, the physio (PT), the cardiologist… The list goes on. I’m a bit like Grumpy - 39 (actually she’s younger than that :), with a young family and career that’s important to me, so I make the choice to spend the least time in doctors offices possible.

I know its been a long road for you. Stay the course, and know we are here for you.

31

Thanks everyone. Got my labs done today. Need to verify with a pulmonologist that my lungs are good and there's no chance of histoplasmosis returning. The derm I saw wasn't familiar enough with histo to know if it could come back after 15 years free of it. I don't think it's an issue, but she wanted to be sure. She gave me a Rx for prednisone, but I'm hoping never to use it, since so many of you said it's so bad. I sure love the way that stuff makes me feel, though! Take care, everyone--I hope you're having a great, or at least, ok day!

Jen said:

Grandma J, I'm so very glad you have finally decided to make the plunge, and that our support and information has helped with that decision.

The decision is difficult for everyone, though it can sometimes be hard for those of us who had a brutal onset with multiple complications to understand the hesitation of those with a more gradual experience.

I hope you have the marvellous experience I have had with biologics - excellent disease control, vastly improved quality of life, very little pain, and significant REDUCTION in infections (yes, you read that right).

I appear to have disease complicated by IBD and possibly some organ involvement, which show their head during flares that i get underlying the treatment (but I out myself in harms way that probably causes these flares). Even with this, the biologics have given me back my life.

And I can verify what Grumpy says - when my disease is well controlled, I take an injection once every two weeks (Humira), occasionally turn up for blood tests, and see my doctor once every six months.

When I have poor control or some terrible underlying flare, I'm in the eye doctors, the physio (PT), the cardiologist..... The list goes on. I'm a bit like Grumpy - 39 (actually she's younger than that :), with a young family and career that's important to me, so I make the choice to spend the least time in doctors offices possible.

I know its been a long road for you. Stay the course, and know we are here for you.
32

Its sorta like getting ready for christmas.....

33

I am so happy to see everyone on the same page today… Clearly there is a lot of passion felt by members of this group with regard to PsA. Pain and suffering sort of do that to people… Just my two cents regarding biologics… I have had horrible side effects from DMARDS, and two biologics. I am on Stelara now and so far very happy with it… I believe biologics are our best chance for remaining active and living the best quality life possible. I appreciate everyone in the group sharing their experiences, and certainly their fears as well… We are a support group, and it feels good to know that your support is out there in a world that really has no idea what PsA feels like… Thank you! And thank you to Grandma J for sharing her fears… She is not alone I’m sure, so hopefully clarifying this issue for her has helped other people too.

34

Grandma J, I totally understand wanting to stay the heck away from doctors' offices and off drugs. I have a list of drug allergies/sensitivities as long as my arm. I'd love to just walk away from the whole bad business. BUT.

You say you would never let your hands get as bad as the horrible photos. It's not that simple. I've been in Rheumatology World for a little over two years now, although you might think after having six orthopedic surgeries before that, someone might have put the pieces together. Anyway, after two+ years, I'm maybe, just maybe, starting to get on something that works. My first rheumy closed her practice suddenly. Three-month wait to see the next. He was hopeless. Four month wait to see the third, adding up to almost 8 months without continuing care. Side effects from the first two biologics, long waits in between. A couple of appointments had to be rescheduled while getting ready to start the current biologic, 6-week delays each time. There goes three more months.

I won't go on any further, but you see the point. There are no guarantees your first try will be "The One". There's no guarantee you'll still have a doctor next week, and in most parts of the country that's catastrophic. If your doctor feels you qualify for a biologic, and they do not hand them out like candy, take that very seriously. Glad to see you are reconsidering using them.

Good luck, and I wish you quick results.

35

I love this place cuz we can bare our souls, complain and go into great detail describing our symptoms and everybody is interested, understanding, and willing to help. Have a good weekend everybody!

36

We’re glad you found us, Grandma J, even if it’s too bad that you needed to. By supporting each other, we help ourselves as well! That’s the beauty of Ben’s Friends.

37

Ok, so after reading all of this I am willing to try the humera that my doctor has perscribed, but first I have to wait on the dept of health to give me the meds I need because of a first time positive tb test after taking the MTX. Then there is the question of "how do I pay for it?" My copay on my insurance is 631.00 a month. That is literally half my monthly income. My other question is will I get as sick from side effects from the humera as I did from the MTX? I thought the MTX was gonna kill me, literally.

38

I'd bet you'll have NO side-effects from the Humira at all.

I thought MTX would kill me too, Leflunomide I thought 'agreed' with me to begin with but that was likely responsible for some awful skin reactions and has left me with peripheral neuropathy in my forearms.

Now on my second biologic, Humira didn't help me and Simponi is doing something, but definitely no side-effects. In fact I never even considered side effects on the bios as a likely possibility.

Give the Humira a try ..... you can always stop it if you get unacceptable side-effects but more likely it will do what its intended to do and make you feel better with controlled PsA.

39

Thanks Jules, now I just have to figure out how to pay for it.

40

Mariellenl, the worst that is likely to happen is … nothing. Biologics generally have very little in the ay of side effects because they are so carefully targetted.

Call the consumer helpline for Enbrel and discuss the finances with them. All of the manufacturers have plans, I just picked the first and oldest one as an example.