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Posted 8/29/2005 3:50 AM (GMT 0)
Hi: I'm a new member,have ra for about 20 years.been on many different drugs with some relief but in the am I will take my first shot of ENBREl, does anyone have any suggestions or support,I am a little apprehensive as it is a new drug with little known long term effects.===Thanx Dug nono

Post Edited (dug) : 8/28/2005 10:06:27 PM (GMT-6)

Posted 8/29/2005 4:08 AM (GMT 0)
Hi Dug, and welcome to the community. One tiny suggestion, some of our members have vision problems and your color is rather hard to read. A little darker would be a world of help. Thank you.

There are quite a few of our members on this medication and I am sure they will be along shortly to welcome you and share experiences.

We are glad to have you and hope you continue to post often,

warm wishes to ya,
flopsie
Posted 8/29/2005 2:47 PM (GMT 0)
Dug,
Welcome to HW! I am so glad you began Enbrel therapy. I was on it for over a year changing between 25mg twice weeklies and the once a week 50mg's. (The 50's sting a bit, you might find that out!)
I was very very pleased with Enbrel. In a course of 6 weeks I was better at sitting up in a chair, it helped immensely with spinal RA and AS and eased the inflammation around my chest and ribs and lungs, and there was a good improvement in my fatigue as well.
I feel the rare but possible side effects outweigh the benefits of Enbrel.
I became very immunosuppressed from it, and also I was being monitored for Lymphoma. The lymphoma was clear; still immunosupressed but no big deal. Having yopur WBC's go low is one of the more common long term side effects.
If you had a history a MS....I would just keep an eye on your body and report any weird numbness/weakness or vision problems. And of course always get a TB test or Chest XRAY when the doc calls for one.
I worked in a hospital for the whole duration of Enbrel therapy....AND NEVER CAUGHT ANYTHING!! I owe that to good hand washing and not touching my face. I even had my face in people with pneumonia, TB and bronchitis too! So just be cautious of germs and buggies around ya and you'll be okay.
When you get like a fever or the flu....the doc may want to pull you off Enbrel till you get better.
I'm sure you heard a lot of this stuff already!
But honestly, the drug did make a lot of changes in my condition for like 7 months....some people who are on it go into a chemical remission and there set! Hopefully it works well for you & I hope it does.
Oh, the nurses on the Enbrel ENliVen hotline are great! They answer any questions you have.
I wish you the best
Erin
Posted 8/29/2005 4:18 PM (GMT 0)

Hey Dug,

I have to start Enbrel shortly myself - let me know how it goes. Do you have a pretty solid immune system? If so, I think there is a good chance you won't have troubles as long as you use extra care with hygeine like Erin said.

Erin, didn't you say something about icing the area first or something to help the sting? I have to take the once a week 50 mg shot (yuck! But, I guess it's better than twice a week!) and I'll need all the mind-numbing support I can get! tongue   Ha ha!

So, once they can detect lymphoma in your blood stream - it's too late, right? Once there you have it? Is that a side-effect for all TNF's as well as MS?

**

Posted 8/29/2005 4:41 PM (GMT 0)
My understanding is that Lyphoma is a side affect of all of the TNF inhibitors.
I am also concerned about the possible long term affects of Enbrel and MTX, but I don't see that I have much of a choice.
Without it was miserable, not how I want to pass my time.

We have discussed recently that for some, Enbrel and MTX seem to take several weeks to kick in, don't get impatient and stay with it.
... Craig
Posted 8/29/2005 6:01 PM (GMT 0)

hey Camama,

there's this theory that people with RA have a higher risk of Lymphoma anyways...so is there a real correlation to the TNF's??  not really, but sorta... but it is something docs want to look out for just like TB.

same thing with the MS.  if you're at risk for MS, these drugs might increase the chances of it a little and or bring it on faster, or give you MS symptoms that go away after therapy.

i honestly think that TNF's are much better and safer than steroids in regards to effects.

auoimmune diseases are funny.  experts say that MS may stem from an autoimmune etiology; and since our immune systems are lymph nodes, why not lymphoma!??

i think it all has to do with vulnerability to the side effects.  read the studies done in the booklet that comes with enbrel & it explains  alot of the "at risk" stuff....the studies are interesting.

yea, some folks like to put ice on the area for a few minutes before injection.  it might work for some people...but it's the liquid med that does the burning, so of course you'll feel it a bit. no pain no gain???

the Humira burns!!  oooh boy!  i guess we'll all grimace together!

take care

erin

Posted 8/31/2005 12:59 AM (GMT 0)
hey Dug,
just wondering...did you take your shot?? what dosage 25mg twice a week or 50mg singles??
if you find the 50's intolerable...you can ask to change to the 25's (you feel absoluety nothing with the 25's)!
i am rooting for you!!
erin
Posted 8/31/2005 1:52 AM (GMT 0)
Dug, welcome to HW. I too take the enbrel 25's. I have found that injecting in the stomach is the best place. You can rotate the sites like they do for diabetics and hit stomach, arm, thigh and then start over again. I just inject in the stomach. I tried the leg one time and the burn and pain were almost unbearable. It took almost 2 hours for the sore to go away. As to long term affects? We all would like to know. Unfortunately that is one of the downsides to taking a newer med. They haven't been tested to see what the effects are long term. Short term it seems that all most people seem to find is that they are more succeptible to infections and once you got one it took a while to get over it.
Keep posting here and let us know how you are doing. How did your first injection go?
Oreo
Posted 8/31/2005 3:32 AM (GMT 0)
Have you ever tried your arm Oreo? Did it sting just as bad?

Do you have to change WHERE in your stomach you give yourself the shot?

Posted 8/31/2005 9:49 PM (GMT 0)
Dear Camama,
I didn't wanna jump the gun on this question because I believe it's geared to Oreo. The thing with injection site rotation is to prevent like cellutitis of the area. In the abdomen you inject in a place and like the next week move the inj to a say an inch apart and so on and so on, and both sides of the abdomen. And then eventually you can follow the same pattern. In other words...trying not to exhaust one certain area of skin.
The reason the Enbrel 50 mg burns is because the pH is lower...meaning it's more acidic, and it does not contain the alcohol derivitive either which is in the 25mg diluent water.
The enbrel 50's stung EVERYWHERE I tried it!! But ... if you can take a little heat it is worth it. But keep in mind that they do still make the 25mg twice weeklies if the 50's are truly intolerable. Honestly, I would chop off a finger every week if it meant getting better!! Everybodies different.
When do you start Camama??? Are you going on anything else as an adjunct to the injections?
take good care
erin
Posted 9/1/2005 3:24 AM (GMT 0)
Camama, Erin pretty much said it all. I haven't tried the arm mostly because I find it very akward to hit the fleshy part of the opposite arm. I just do the abd. I alternate sides. Usually I will have 3 bruises of varying colour so it is pretty easy to not hit the exact same spot less then 2 weeks apart.
(just an FYI, something to add to those little tidbits of info that we all seem to have floating around in our brains) they only make the 50mg strength in the USA. It has not been approved for use in Canada yet, so those of us Canucks only have the one option. From what I hear they are hoping to get FDA approval within the next year. I am fine with doing the twice weekly thing. I find if it is unpleasant I tend to get a pschosematic response to the med and have a very hard time taking it. (I think back to taking Mtx as an injection and for the longest time after I stopped taking it I couldn't smell rubbing alcohol without getting nauseous (?) because the mtx made me nauseated and I associated the smell with the feeling.) Our minds play a major role in what we do and feel.

Oreo
Posted 9/1/2005 4:51 AM (GMT 0)

I hear ya....oy...I'm REALLY bad with getting medicine injected - it really hurts me! Even the numbing stuff kills me.  I was thinking of having my husband do it for me, but if I have a hard time with it, the safest place for him to inject it would probably be the rear end where I can't swat his arm with my hand. But, I don't know if you can get it there!

I still have to take a blood test and make an appointment - I've been stalling for a couple of reasons, but dont have time to write about it now.

**

Posted 9/7/2005 2:32 AM (GMT 0)
Dear CaMama,
You were so there for me when I was procrastinating on getting the TB shot and starting Humira.
You supported me. It was your encouragement and the others here that forced me to get my act together and finally begin. I am due for my fourth shot now.
The shot does hurt. There is no denying that. I have checked with the nurses at Humira, and they inform me that the pharmaceutical company said it is the preservative that they have to put in the biologics that causes the burning pain. There is slight pain, for a second or so during the initial injection, stab part, but mostly the pain comes while the medication is being introduced into your body. That pain lasts about 15 seconds. It is painful.
I give myself permission to use a bad word during those fifteen seconds. I have warned my husband to not stop with the injection just because I am using an inappropriate word.
Once it is done, I just lie there for about 20 minutes to a half hour. Then I get up and notice that I can walk a little better and it makes those few seconds worth it.
I also notice a decrease in that constant FATIGUE!!!! The kind that makes even the simplest of jobs around the house seem like I am climbing mount everest.
So dear CaMama, I will pray for you. If you want I will call you and talk to you on the phone whilst your husband injects to try and distract you. I find it easier to let Martin do the injection, but that is just me. I have injected in the legs and abdomen. I have more fat on the abdomen so I think I will stick with it.
I really hope you can do this soon, and start to feel healthy again. Hang in there. I have you in my thoughts and prayers. Sorry I have not written I have been feeling a bit down.
Judy/Effie :-)
Posted 9/7/2005 2:46 AM (GMT 0)
Hey Miss Effie,

I know this was directed at Camama, but I need to jump in for just a moment..ok....ready..here goes..kerplunk...splash..(whew, flopsies says swimming to the side.) Ok now, Sorry you are not allowed to feel down today, uh uh, no siree. You need to go to the fun threads and have a good laugh, think about our orphan Erin in her red head..ok?

But in case you don't feel like doing that..I am so sorry to hear you are low, hope things start looking up for you soon. Try to join chat tomorrow, ok? We will make you feel better..promise,

flopsie

Posted 9/7/2005 2:48 AM (GMT 0)
yea Judy...post on our fun thread!!!!!
Posted 9/7/2005 6:03 AM (GMT 0)

Thanks for the encouragement, Judy. I appreciate it....I will get it....I know part of it is procrastination and part of it is fear....but some of that fear is justified (I guess) in the JUST IN CASE scenario this stuff makes me sick like Remicade did - I can't afford to take that risk just yet. However, as the joints act up.....you gotta think, "which is the bigger risk?"

I'm sorry to hear you are down....feel free to vent it out..I"m here to listen. I hope you are able to work through this spell quickly and successfully. I hate feeling that way. sad

**

Posted 9/7/2005 6:13 AM (GMT 0)
Effie, Camama made me go back and look at my post.Hon, I was not saying not to vent..just trying to make you laugh a little. You know we are all here for you, anytime you need to let it out. I just get overzealous at times..ya know.

Just remember we all love ya here, but above all God loves ya too. With Him all things are possible.
Posted 9/8/2005 3:48 PM (GMT 0)
Hey Flopsie, I got the humor, I'm sure Effie did too  - I didn't mean to make you feel otherwise!

Effie, I hope your spirits are starting to lift! I'm struggling with mine as well, but it's that season, time of the month, and I've just got issues. eyes   Did I just admit that? Maybe.   tongue

Posted 9/8/2005 4:53 PM (GMT 0)
Issues Camama, surely not. I hope both of you are in better spirits today. Fall is coming, maybe we will start to feel better.
Posted 9/8/2005 5:41 PM (GMT 0)
Thanks.  :-) Autumn is not very  friendly to me...I itch all over, I've got some rashes starting (psorisis breakout? Maybe), allergies and a flare, I am adjusting to my oldest going to school every day and her complaints about how much she hates it (though, when I pick her up she says she had a good day),  some lone parking vigilante at the school who is a busy body loudly wondering exactly WHY I use the DP parking some days when clearly my children are fine and I am walking w/o any help from an apparatus. PMS adds to this down cycle.

Okay, that's enough venting. This flare will eventually end - and so far, it's not that bad unless these allergy/cold symptoms are more than what they seem so far, Amy and I will figure out a way to adjust her better in school, and I shouldn't care what other busybodies have to say about where I park - it's none of their business.  As for the female issue making it worse - a few more days and I should be past that as well.

:-)

**

Posted 9/8/2005 5:56 PM (GMT 0)
Dear CaMama and Flopsie,

Thank you for your kind offers of support. Flopsie, I did not take offence to your post. In fact it brought a smile to my face, imagining you jumping in the pool and swimming to the sides. You should write a book, your words were very descriptive and brought me joy.
CaMama just knowing that you are offering to lend an ear also brings me joy and warms my heart.
I just simply can not explain quickly what is going on. I wake up every day and try to fight this horrible depression. I want so desperately to return to work, to be able to clean the house and cook meals without incredible pain!!! Anyway maybe shot number 4 will do the trick. I want to feel like the lady in the movie that they send you with the Humira.
CaMama I know what you mean about the risk of getting sick while on a biologic.
about a year ago I had an argument with my best friend of over 20 years. We went to University together and she was also my family doctor.
After she put me on a strong narcotic she informed me that I had to choose between her being my friend or my doctor. I lost my temper and said I wanted neither. I never should have done that. I grieve the loss of her friendship and she now has moved 5000 miles away. No forwarding address. However she did give me my medical records.
This summer I spent some time perusing my medical records. I noticed that over ten years ago a doctor had suggested I have follow up done on some tests he had done which showed something about early stage squamous something. So this summer I had phlegm samples sent to my doc. They came back showing I have a staph infection in my lungs. He told me it would be difficult to treat and I would have to stop Humira and go on antibiotics for anywhere from 6 weeks to 6 months. He also told me I could choose to stay on the Humira and deal with this once I felt a bit more mobile.
Well I chose the Humira. I do not know if that is a mistake or not. I will give the Humira a few more shots.
It is a big decision. I hate having to make decisions, yet alone health ones. I mean I know nothing about any of this. When I had my best friend for a family doc, I was really spoiled. She would have researched this and given me the best medical advice.
So I understand your fears. For the time being, I am just taking a strong cough medication to help my lungs not get so congested. I know you were very sick b4, so no wonder you are scared. I guess it is a bit like a balance scale. What is worse, aching everywhere from arthritis or possibly developing an illness because of compromised immune system? It is especially hard when you have young children. All I can suggest is that if you try the enbrel you can always come off of it if you get sick and I will pray that you do not pick up anything.
Well I just want to add if you feel like venting feel free to email me and maybe we can both somehow not feel so down.
I know for me a big part of it is I wish I was single again. However I can not articulate all the reasons, it is just too long and complicated.
Take care. Thank you both of you, it is amazing how much better I feel knowing I have friends.
Judy/Effie :-)
Posted 9/9/2005 5:40 AM (GMT 0)

Oh Effie! sad What a sad post! I know exactly what you are going through! (well, as close as anyone could, I think.)The sadness you feel about daily life - I'm there, I've been there, and I'm sure I'll be there again. I meet these other moms who are on the go and have a more or less organized house, I'm so ashamed of myself! Not able to do more than 1-3 activities with the kids - a WEEK (not a day.) That I have things in the house that have needed to be taken care of for YEARS (not months or weeks.)  That keeping the kitchen tidy is an enormous task initself, let alone the rest of the house! Now I have to worry about additional/secondary problems because of years of gaining weight...the weight is now a huge factor in  my viscious circle of problems.

I'm so sorry to hear about your arguement with your friend. There must be someone who can get you contact information. Maybe you can call and have a heart to heart with her via phone or email. Though, 5000 mi. is a pretty far move - where'd she go, timbuktu?

I'm concerned to hear about that staph infection. Those things are pretty nasty and w/any AID, you are going to be more susceptible to thoes things. But, one in your lungs???? I"ve never heard of that...yikes! Any ideas how long it's been there? How bad it is? You NEED to get that taken care of, please don't delay.....I know it's a tough decision, but the staph infection could be contributing big time to your serious pain/flares right now....forgive me if I'm wrong and maybe one of these nurses will step in and tell me to shut my mouth. I say, if  you don't feel better w/humeria after a few more shots (how often do you take it?), get that infection taken care of immediately! If that has been lingering in your body - getting rid of that may be the biggest help you need. I know antibiotics put your body thru heck, but it is important to rid yourself of that infection!

As for your marriage, mine has been seriously on broken ice more than a few times. I truly think the stress between my husband and I last year contributed greatly to the shut down of my body. My illnesses take a huge toll on our relationships. He completely and utterly has NO ClUE to what I go through at time, even the simplest things.

I wish you the best in your recovery, peace in your decisions, and only happy thoughts in your mind.

**

Posted 9/9/2005 6:21 PM (GMT 0)
effie,
keep a close eye on that infection. an untreated infection while on biologics can lead to sepsis, and then you'll land yourself in the hospital! it is worth getting treated for the infection first and foremost! what has your doc said?
erin
Posted 9/9/2005 6:56 PM (GMT 0)
Thank you Erin. I did not know that. The family doctor did not tell me that. Maybe this is why I feel so tired all the time. I see the rheumy on september 21st so I will get a copy of the lab report and bring it to her to peruse. My new family doctor is not very good. when my friend was my doctor I had the best doctor in this city. However when I tried to find a new doctor, I went to twelve who said my case was too complicated to take on. The doctor I have was the 13th doctor I had been to. the other reality is that he is the only doctor who would agree to give me pain medication. Even though the meds I am on have been recommended by my rheumy, the fibro specialist, the pain doctor, the neurologist, the endocronologist etc, but none of them want to be responsible for writing the script. the pain doc would but he is very far away.
I appreciate your info.
thank you.
good thing I have erin watching out for me,
Judy/Effie
Posted 9/10/2005 2:34 AM (GMT 0)

Judy Judy Judy!

i forgot to tell you...be sure to take your temperature!  just to be safe until you get treatment for the infection.  i would really get to the doc for antibiotics.  you don't want to end up with pneumonia or sepsis or anything.

be careful hon...okay?

{{{{{{{{{ hugs }}}}}}}}}}}}}

erin

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