Am I the only one afraid to take Enbrel?

General
1

Hello Everyone:

I am new to this site and new to PSA just diagnosed in Feb 2012. I Love this support group its been so helpful to just listen to everyones stories and KNOW that I am not alone. That in itself has lessened the stress I was carrying so thank you for that!!!!

On to my question. My Rhuem. wants me to take Enbrel but my insurance wont cover that unless I fail two drugs first. I can say that I failed Htdroxychlorquine with severe hives UGG that was not pretty at all and then have to correct the allergic reaction with high doses of steroids and other meds.... now I am to start MTX this weekend which my dr has told me that he dosent think that it will help my PSA but lets stay hopeful. I have started the folic acid supplement to help reduce the damage that MTX causes. His goal is to put me on Enbrel. I dont want to take this type of medicine the fear of the possible Lymphoma, blood disorders, neurological problems, other cancers and lets not forget death.

I read on here that most everyone that takes the injections of enbrel is very happy with that. Am i being paranoid or am I just not sick enough yet with PSA???? My body does not like most meds and it scares me that if I reduce my already compromised Immune system with a med that can have such severe effects on my body that i could end of with a life threatening condition.

scared and confused pretty much sums it up.

2

Hi, Trishdett! Welcome to our group, where we're all in the same boat, that is, your boat! I think most of us are scared, not only of the biologics like Enbrel, but of the DMARDs as well. My insurance covers biologics, but my rheumy refuses to prescribe them until I've tried the alternatives. And I'm realizing now that means all of them! So I've been on MTX since September, without effect. Then I tried triple therapy with sulfasalazine and hydroxychloroquine, and still no improvement. I was hoping for a biologic this week (never thought I'd say that because I, too, am scared silly of them), but this week Dr. Rheumy started me on Arava (leflunomide). I was so disappointed, I cried. Another four months of wait and see ... and I seriously doubt it will help. By the time I get to something like Enbrel, I will have been on drug therapy for a full year. A year of pain, fatigue and disability, on top of the time I did before diagnosis. (LOL, "the time I did" sounds like a prison sentence, doesn't it? In a way, it is...)

Paranoid? Not at all. These are heavy duty drugs with severe effects. But there came a point when my PsA was having such a negative impact on my life, that I was ready to try anything that would give me my life back.

I agree with you, this support group is wonderful, isn't it? I've made many good friends here, and they are friends that really understand what having this is like.

We're here with you, Trish!

Seenie

3

You have far fewer side effects with the Biologics than the DMARD's. That being said While it is wise to read the drug information That doesn't give a real picture/

Let start with infections.... They talk about an increased risk of infection but they don't saa why (Do they) My understanding there were two sources one from surgeries which significantly increased infection rates anyway. Simple solution, gonna have surgery quit taking it 10 days before - No enbrel in your system The other major source came from those taking live vaccines (chicken pox and nasal flu) again an easy one. Have a cold flu etc. call your doc ask them if you should stop or not. The studies done since the FDA studies have shown no greater risk of infections (hospitalization required) with biologics than not.

The cancer is a tough one. it seems the increased risk is just shy of 1% greater. Cant explain that one away as easily other than the fact (I used to teach statistics) you have a 30% chance of getting cancer in your lifetime anyway. A 1% greater chance in the study means little (unless you are the one with cancer) as 1 in three had a chance of getting it anyway because the number of those getting it was WELL within 1 standard deviation a statician would tell you its 100 times more likley that that extra 1% was going to get cancer anyway.

The others (Blood neurolgical etc) TO ME ( its individual decision) mean nothing I know LOTS of PsA folks with all of those things and more. is it the PsA or the Meds my bet is on the PsA.

There is fairly prolific writer (can't think of his name) who believes its all diet and can be fixed with massive teracycline. problem is I asked him why then does he still have it? (seems like a fair question to me) He told me its because he took tylenol for 10 years and it made it worse. Asked him if it was possible that maybe (like all of us) it got worse in 10 years because that's what PsA does. Anyway our email discussion came to a screeching halt.

I hope something works for you soon what ever it is. Many have been helped by your current regime. BUT the process you are going through to get to the Enbrel has very little to do with "side effects" and everything to do with cost. I'm private pay. We started with enbrel (once we had a definitive Dx) the NSAIDS were doing little.

We hear a lot of fancy terms but heres my read FWIW (and probably not much)

NSAID's "Take two aspirin and call me in the morning" (really that all it is, we got tylenol and few others now but thats what it is. Oh if your stomach falls out and your liver fails we'll find something else

DMRD's "they kill cancer maybe they will kill your PsA too. but take two aspirin while you are at it and call me in 3 mos and again if your stomach falls out and your liver fails we'll find something else.

Biologics "We have some humanized hamster DNA that is the first drug specifically developed for your condition, lets try it and see what happens. Along the way we'll give you give you some aspirin and mayby some steroids to reduce the inflamation (it works for NFL football players) if your body seems to not like hamster DNA (humanized of course) but it seems to be working, we'll give you some of that cancer killing stuff to confuse your immune system some more but at least we won't have to worry NEAR as much about your stomach falling out and your liver failing.

Its a crap shoot, but if you really want to see me shoot (literally) try and take my Enbrel from me.

4

I surely did not dig deep enough with my beginning research of Enbrel to catch the Chinese hamster ovaries, and forgive me for having to look for myself, but you are right on about that. I guess maybe I only wanted to read the part that told me that I should have less side effects after a stomach ulcer from the Sulfasalazine and far too many blisters to count inside and outside of my mouth from the Methotrexate, in the mean time more and more of my hair is falling out, and the PsA just escalates! I surely hope that I come to feel the same about Enbrel as you, tnt! Thanks for the statistics, they make the warnings make more sense to us. But you know if it were made out of the vilest things on earth, and someone claimed relief, we would at least consider trying it. BTW, My NSAI of choice is Oxiprozin, the med for Sciatica is Lyrica (may very well be the cause of the hair loss) and Opana is the narcotic of choice to break the pain cycles.


tntlamb said:

You have far fewer side effects with the Biologics than the DMARD's. That being said While it is wise to read the drug information That doesn't give a real picture/

Let start with infections.... They talk about an increased risk of infection but they don't saa why (Do they) My understanding there were two sources one from surgeries which significantly increased infection rates anyway. Simple solution, gonna have surgery quit taking it 10 days before - No enbrel in your system The other major source came from those taking live vaccines (chicken pox and nasal flu) again an easy one. Have a cold flu etc. call your doc ask them if you should stop or not. The studies done since the FDA studies have shown no greater risk of infections (hospitalization required) with biologics than not.

The cancer is a tough one. it seems the increased risk is just shy of 1% greater. Cant explain that one away as easily other than the fact (I used to teach statistics) you have a 30% chance of getting cancer in your lifetime anyway. A 1% greater chance in the study means little (unless you are the one with cancer) as 1 in three had a chance of getting it anyway because the number of those getting it was WELL within 1 standard deviation a statician would tell you its 100 times more likley that that extra 1% was going to get cancer anyway.

The others (Blood neurolgical etc) TO ME ( its individual decision) mean nothing I know LOTS of PsA folks with all of those things and more. is it the PsA or the Meds my bet is on the PsA.

There is fairly prolific writer (can't think of his name) who believes its all diet and can be fixed with massive teracycline. problem is I asked him why then does he still have it? (seems like a fair question to me) He told me its because he took tylenol for 10 years and it made it worse. Asked him if it was possible that maybe (like all of us) it got worse in 10 years because that's what PsA does. Anyway our email discussion came to a screeching halt.

I hope something works for you soon what ever it is. Many have been helped by your current regime. BUT the process you are going through to get to the Enbrel has very little to do with "side effects" and everything to do with cost. I'm private pay. We started with enbrel (once we had a definitive Dx) the NSAIDS were doing little.

We hear a lot of fancy terms but heres my read FWIW (and probably not much)

NSAID's "Take two aspirin and call me in the morning" (really that all it is, we got tylenol and few others now but thats what it is. Oh if your stomach falls out and your liver fails we'll find something else

DMRD's "they kill cancer maybe they will kill your PsA too. but take two aspirin while you are at it and call me in 3 mos and again if your stomach falls out and your liver fails we'll find something else.

Biologics "We have some humanized hamster DNA that is the first drug specifically developed for your condition, lets try it and see what happens. Along the way we'll give you give you some aspirin and mayby some steroids to reduce the inflamation (it works for NFL football players) if your body seems to not like hamster DNA (humanized of course) but it seems to be working, we'll give you some of that cancer killing stuff to confuse your immune system some more but at least we won't have to worry NEAR as much about your stomach falling out and your liver failing.

Its a crap shoot, but if you really want to see me shoot (literally) try and take my Enbrel from me.

5

Seenie, tntlamb & SK:

Thank you for your support and input.

Trish

6

Trish, I was diagnosed in Oct or 2011 and have only been on piroxicam and meloxicam. I am in the same boat as you are. My grand father died of lymphoma, so I am horrified when I hear the Embrel commercials. I am around children all the time, being an art teacher, and can't imagine doing that with a lowered immune system. So far the anti inflammatories really do nothing. I can watch the joints in my fingers changing and swelling daily, and know that the progression in all my joints is happening way too fast. I'm active and have horses and two new baby grandaughters, I can't let this thing progress at this speed. Besides the joints, my skin is itchy all over my body...just tiny little chill bump size bumps, but they inflame red with stress and itch like hell, including my scalp. I should be grateful to not have the obvious silver plaque psoriasis, but this is maddening and sometimes I totally freak out about it. I hate this disease, I have no idea why I picked such a sucky disease! lol. Sorry to whine and be of no help, I am new here too and just spilling my gutts.

7

Welcome Shawn, sorry you are here, but glad you came. The cool thing here is we all approach this thing differently. BUT we can respect each others choices, and that doesn’t happen too many places. We have ALL been where you are. It sorts out, really it does.

8

I was petrified to take Enbrel. I can't take mtx, anti-inflammatories, or DMARDS due to other health issues, and I've made huge dietary changes that haven't helped, so biologics are my only choice at the moment. Now that I've been on Enbrel and have regained joint mobility in my ankles, wrists and hands and have much less pain in those areas, I'm thankful I decided to take it - it still freaks me out, but not nearly as much as before I started.

9

Hello NYM,

How long have you taken Enbrel, and how long did it take to feel a difference? I have only taken 1 shot so far.

Everyone has been very helpful to me, thank you all.

SK

10

No you are not the only one afraid of the side effects. I too wrestled with that when my doctor wanted me to try methotrexate. I had to chose between the POSSIBLE side effects or the very real & present fact that my joints were "fusing" on me. I lost the use of my one wrist. The methotrexate made me sick. So after three months on it, my rheumy tried me on enbrel. Three months later & the enbrel has no effects, now my ankles are fusing and I am developing diabetes. For me it was a choice between the possible side effects & the very obvious loss of the use of my own body. We all have to make choices in life. We all do. Some choices are easier then others. The choice for PsA sufferers is the POSSIBLE side effects or the CERTAINTY of fusing joints. Everyone chooses what they think is best for themselves. You can choose to do nothing at all. There is no right or wrongs here. It is your own preference. What ever you choose, will be right for you. Best of luck to you, and welcome to our group. Hope we could all be of help to you. Keep us updated & let us know what you deceide.

11

I think that the choice, knowing it is a very difficult one, has to come from you in the end, I have had PSA since I am 22 years old, and I am 48 now, I refuse to take most medications, not because I am not in enough pain, but because the risks to ME are just to much. But, this is a choice I made for me and my family. It does not mean that you will make the same choices. You must decide what you feel is good for you. No matter what medication you decide to take, there are always going to be risks of many different sorts. The real question is how are you dealing with the illness and do you feel that it is nessecary to take the stronger meds or not. How many have you tried, and what reactions have you had. This illness is ugly and hides like a thief in the night, people sometimes don't see the uglyness of it. But we do, and each person struggles to find peace and comfort from pain.

I sure hope you find the answers that you are looking for, and especially finding something that can help you!

But this site is a great place to start and to seek out info!!!! Hugs

12

My motto is "fear the disease not the meds" I have only pain without humira and MTX . I have spine and all large joint involvement. At first the rheum talked me into taking MTX it worked and rapid (very rapid) disease progression scared me more than the meds. I really feel healthy on these drugs and am a hysterical mess without them . It is definitely a

personal choice though good luck :).

13

I'm not trying to sell anything here I promise but..... 2Tree brings up an excellent point. If it is side effect's of the drugs that concern you, and they are an important consideration, you have got to realize those (serious) side effects happen 1% of the time OR LESS.

Make a list of side effects from failing to have your inflammation under control here's a few..... Sometime WE forget that this is not just a bad form of regular ol' arthritis.

Iritis happens to 30% of PsA patients can lead to blindness or severly compromised vision. Corticosteroids injected directly into the eyes of patients with iritis are sometimes necessary to decrease inflammation toprevent blindness.

Organ involvement in untreated PsA occurs 5 - 30% of the time. Aside from the gut problems inflammation in and around the lungs (pleuritis) causes chest pain, especially with deep breathing, as well as shortness of breath (also rare). Inflammation of the aorta (aortitis) can cause leakage of the aortic valves, leading to heart failure (the disease not actual heart failure.

It was Heart Failure BTW that lead to my Dx. You want some nasty drugs.... I was being evaluated fro an implanted pacemaker defibrillator to stretch things out.

The thing is this disease is not just joints and "pain" SOME kind of treatment and intervention is necessary. When the NSAIDS fail and you move to the DMRAD's and they fail then Its time to realize YOU have a real problem Make sure please that "fear of Drugs" as 2Trees alluded to is not denial. This is a very serious disease with very serious complications and progression.

It is a choice but make sure it is a fully informed choice.

14

Everyone!!!!

Thank you all so much for your words again the best thing about this group is knowing you can say think or feel anything on here and its ALL OK!!!! Empathy is very healing for the heart.

still confused and scared but i Know as everyone has done or will be doing I will make decisions and hope that they are the right ones but if it turns out not to be the best choice I will give myself permission to make another choice

15

Finding a good Dr. that you can confide in and discuss this will mean everything to you. Just remember that this disease will not wait to progress. My GP told me that once you loose your joint health, nothing will ever bring it back. Most of these meds can slow the process, prevent further damage, so you have research to do and decisions to make, but the Dr. can help you with this. All of the Doctors I know are very impressed with the biological drugs, they are considered the drugs of the future.

Let me add that you have been given very sage advice here, I have re-read all of the input and you are very fortunate to have been given such wisdom to choose. I chose the best quality of life that I can have right now, I have do do all the things I can in the present, these grand kids of mine will only be little once, they will only consider me 'cool' enough to want to come visit for a short time. That made my decision for me!


trishdett said:

Everyone!!!!

Thank you all so much for your words again the best thing about this group is knowing you can say think or feel anything on here and its ALL OK!!!! Empathy is very healing for the heart.

still confused and scared but i Know as everyone has done or will be doing I will make decisions and hope that they are the right ones but if it turns out not to be the best choice I will give myself permission to make another choice

16

Well, Trish, up to a point: everything and anything is OK, until you start saying that it's all in our heads. LOL -- kidding, of course!

Seriously, this is a wonderful group of people, and we're glad you're here. Sorry you've had to join our club, though.

Seenie

trishdett said:

Everyone!!!!

... the best thing about this group is knowing you can say think or feel anything on here and its ALL OK!!!!

17

Today is my first day taking Arava (leflunomide), and after reading the information on it, I wasn't feeling too cheerful about it. This morning I actually wondered (briefly) whether I should just quit everything except the pain meds. As always, my friends here talked sense:

The choice for PsA sufferers is the POSSIBLE side effects or the CERTAINTY of fusing joints.

This is a very serious disease with very serious complications and progression.

My motto is "fear the disease not the meds"

I know there are some who can't or won't take DMARDs or Biologicals, and everyone needs to make this decision themselves. But for me, the input on this thread put things into focus again. On with Arava, then.

Thanks, everyone!

Seenie

18

I am just devouring the information you guys are sharing because it is exactly what I need to hear too. I am in the same boat, and not on anything to slow down the very rapid progression this disease is taking now, even though I actually had this since my 20s and didn't know it. When I read what can happen to my joints if I don't stop this now..even as I can watch my hands changing dailly....I know I will have the courage to go on Embrel. It seems to be the one chance I can take to prevent every joint , back, neck, knees, ankles, hips, and wrists..not to mention my hands, from deteriorating daily. It's so difficult to even accept that this is happening. Thank you all for your wisdom, honesty and openess in this group.

19

Good for you Seenie, glad you decided to give it a try! The regular blood tests and Dr. visits will help you make sure this is the one for you. Many brilliant scientists labored many a year to perfect these for us.

My Grandmother lived to be up in her 80's, she was stooped, hunched backed, could hardly even manage a walker because her upper body could not hold up the rest of it, and every bone in her body was full of hair line cracks, like an old bone china cup. She also had Gillian barrre syndrome, that was terrible too.

I wish she could have had these biologicals! She suffered beyond belief, took so many anti-inflammatories that we thought she would bleed to death years before she actually died, because that was all she had available!

My Mom said her mother, and her grandmother were also hunched and humpbacked and could hardly walk, so I owe it to them and to my grand kids who all have Psoriasis to embrace the best meds I can possibly get! Even herbs have side effects if you take too much, for too long, or the wrong combination.

I took my second shot of Enbrel Friday, have worn my Tommy Copper blouse and shorts day and night except to wash them, and I have had a very good day, a productive one! Something is starting to work. I just got the TC knee, and ankle brace, unfortunately they are both too small, so will have to send them back for larger. I wear them under my clothing. Didn't have trouble sizing the clothes though, they were a perfect fit, started wearing these before starting the Enbrel, but I may have a winning combination here, may even look into copper supplements, and BTW, on 2trees advice I increased my calcium intake for the muscle attacks! Those are a horror I can definitely live without!

Not only did I ride in the car without sobbing, I actually bent down and cleaned all the seats and the floors before we went, have the grandsons, and NO narcotics were taken! Let me tell you that is spectacular for me!

I may be crazy but I can feel Enbrel going through my body, can't explain it any other way, have not had this experience with any other med, so I am not only hopeful, but excited about it!

Shawn, glad to hear that you decided to try it too, it is worth a try! Nothing ventured, nothing gained, you are a beautiful young woman, this disease can rob you of your beauty and youth in a hurry! If you can't take it just call the Dr. right away, there are other choices.

The choice to take this or any other med or treatment has to be yours, I do not have any intention of pushing something that any of you cannot yourself embrace.

I wish you all the very best! Be well, be happy! Thank you all for your wisdom, your experiences, and your friendship!

Hugs to all,

SK

PS, sure hope I feel this good tomorrow!

PSS tntlamb gave us some excellent info on statistics, read them again!
Seenie said:

Today is my first day taking Arava (leflunomide), and after reading the information on it, I wasn't feeling too cheerful about it. This morning I actually wondered (briefly) whether I should just quit everything except the pain meds. As always, my friends here talked sense:

The choice for PsA sufferers is the POSSIBLE side effects or the CERTAINTY of fusing joints.

This is a very serious disease with very serious complications and progression.

My motto is "fear the disease not the meds"

I know there are some who can't or won't take DMARDs or Biologicals, and everyone needs to make this decision themselves. But for me, the input on this thread put things into focus again. On with Arava, then.

Thanks, everyone!

Seenie

20

2trees, so glad that you found a good combination for you! Humira surely covers a wide variety of arthritis types.

SK

2trees said:

My motto is "fear the disease not the meds" I have only pain without humira and MTX . I have spine and all large joint involvement. At first the rheum talked me into taking MTX it worked and rapid (very rapid) disease progression scared me more than the meds. I really feel healthy on these drugs and am a hysterical mess without them . It is definitely a

personal choice though good luck :).