starting Remicade

I'm guessing there is another post regarding the fat lip? I'll take a look.

I'm glad your starting Remicade. I hope it does wonders for you!!!! I'm sorry you have to wait 6 weeks though, that is a LIFETIME when you are in the kind of pain you are in!

I've never taken Immuran, let alone heard of it before here.....I'll have to look that one up. Is it helping anything yet? Or is that one that needs to "build up" in your system for a few weeks before you see any results?

Good luck, I'm thinking of you!

Hang in there, Erin. I hope it works for you as well. You so deserve some relief!!! Focus on that before you plan your next college and career move, though !

Wife, eh? Something I missed???

I did not have any stinging problems with Remicade. I just rmeember how coooollllld the saline solution is before they give it to you!

**

Dear Ducky,

My wife just sentenced me to this site: no insult intended. My point is I had a discussion with a relative who was taking Enbrel and she was all over the board--to not having p/a; to taking Enbrel with no complications, and being cured in one day(!); and from having no complications from Enbrel, my questioning led her to say that she was taking Enbrel while pregnant and went full term, but the baby was born dead (I remember that sad occasion, but I was not told why the baby was dead.); then she said she had congestive heart failure while taking the drug.

See what I mean by "sentenced"? I've been deteriorating since June, seven months, and I am now under the care of a 4th rheumotologist. The first one treated a sore elbow with a cortisone shot. I soon had pain in my index, middle and ring fingers on my right hand, same side as the elbow. She prescribed "The Purple Pill" and Mobic. For each of four visits she asked me why I had rashes on my knees. I told her I had no idea that I did. She suspected lupus, but I had one marker out of four, and she dismissed it. My father's sister has Lupus.

Soon I was nauseous from the mobic and Nexium, so she took the Nexium away. Strange move, I thought. I happened to tell my pharmacist that my stool was black and he told me that I was having upper stomach bleeding from the Mobic. I quit it and the doctor.

My second rheumotoligist found ankylosis spondilitis and p/a, but he wouldn't treat either until a dermotologist confirmed the psoriasis, which is now truly psoriasis. My kneecaps and elbows are a deep purple; they sometimes bleed, and I am a regular at the dermotologist now. My dermotologist is a good doctor, whom my wife went to a few years ago, and he was disgusted with having to make my diagnosis. That was enough for me to look for another rheumotologist.

My third put me on sulfazine, which made me car sick, and I'm on the road every day. She said she was going to be available to me--but turned out to be a "pill." By the way, she disagreed with the Ankilosis, and chalked it up to aging. I'm fifty-two and in great shape, although I battle major depression, OCD, etc. "What a strange trip it's been...."

She criticized the dermotologist' meanwhile my body continued to deteriorate and the sulfazine did nothing. 

My wife squeezed the name of a good rheumatologist out of him, and I see him now, my fourth. He diagnosed me with p/a, ankylosis spondilitis, tendonitis, one more condition, and AGE. He has prescribed Enbrel, but his receptionist/? dropped the ball when my drug plan refused to fill the 50 mg./weekly prescription. It's eleven days later, and no medicine. I don't want to blow the whistle on her, and my reading about Enbrel scares me. (Some people manage to get dealers'-size dope from their doctors, but I was offered no pain medication, and I'm suffering, afraid to ask, lest I be labeled as someone seeking percs, etc.  

My father died at thirty-eight of coronary thrombosis; two of his brothers did; my grandfather did--at age fifty-five or so, and I've been on cholesterol-lowering medication for sixteen years. I figure at fifty-two I don't need my immune system compromised. I'm afraid that heart disease or some other latent disease is going to surface.

I'm thinking I should find a wind tunnel and search for The Tin Man and hang around with him.

My right elbow now has a quarter moon of fluid and debris between my forearm and socket. The ligaments there have pulled away and have hardened into a lump. The elbow feel as though it's on a string--I shoveled snow yesterday and my elbow is pain today. I bumped it earlier and wow! My right fingers are stiff and sometimes feel as though they are splintered and bones are pushing into my hand. I have the bottom two discs--L4 and L5 bulging; the cartilage is going, going....and I have deterioration in my pelvis. My neck gets so stiff and painful by the end of the day now. My shins feel as though someone whacked a bat across them. My knees are going. My fatigue is bottomless. It takes me three to four hours to loosen up and have a mind in the morning. I can then work--mildly, hardly--for two hours or so, and I'm turning into an oak chair again.

Any advice? I work a full-time job and I teach two college freshman English courses a semester. It's a matter of time before my full-time employer starts asking why I'm not a top producer anymore. Where am I going?

P.S. My wife's looking at the length of this message and she says you'll probably lob tomatoes at me for my longwindedness.

Hey Erin,

1. Yes, I know you and you did leave a few hints in your post about your "plans" - I can see you now planning your phd and private practice before your first infusion!

2. I've told you before about my Remicade experience before, but here goes: At the time of my infusion, I was a mess with pain but also my psorisis had gotten so bad in my hands that my thumb was loosing chunks of skin. It was so painful! After my first infusion - I kid you not - my skin improved w/in 48 hours, I was also feeling slightly better (but maybe that was because my thumb wasn't so painful! ha ha!) By the 2nd infusion I was definetly feeling better. And by the 3rd intial infusion, we went on a family camping trip in to Colorado where we got stuck camping in snow and rain at 9,000 ft. I was in Remicade heaven! I was floored at how GOOD I felt and how I was not bothered by anything!

From that point on, I was loving the med. I could finally fight a cold instead of it being a 3 month ordeal. My joints felt much better. I had denied taking solumederol due to a past problem with Deltasone. I did take Benedryl. I do have small veins and getting the IV was the worst part. I did eventually start having mild perpetual cold symptoms, but nothing that knocked me down or interfered with my life.  I did 8 weeks for quite a while and moved to 7 weeks.

Unfortunately, after 18 months, I slowly started having some allergic reactions during the infusions, eventually it lead to a couple of bad flares where it was like I got the anti-remicade infusion. Then, I started becoming seriously ill with infections.  Mind you - I've always had a very weak immune system and was stricken with actue mono 7 months before starting Remicade that affected my liver and spleen and probably should NOT have started the infustions so soon afterwards. I had started w/ a new rheumy who didn't quite "get" how sick I was with mono, in fact, I had just been given the OK 6 weeks prior my 1st infusion to lift more than 5 pounds. After my 2nd infusion, I had a mild relapse with the EBV. Because of all the health issues I have in general from the psoriatic arthrits and the weak immune system, my system gave out and my liver went bad last year after about 20 months. I stopped Remicade and have slowly been recouperating this past year. My liver has improved, though appears to be slightly damamged - this could be because over the years I've put on an enormous about of weight from immobility and have not been eating well due to depression gorging.

Do not let this scare you. I know a number of people who have GREAT long term results with Remicade for CD AND ARTHRITIS! As well as people who did NOT get relief from Enbrel or Humira, but did from Remicade!

Good luck! ** (no, I still have not started Enbrel)

Glad you found us here, and I am very happy that you decided to post!  Welcome to Healing Well... Hhhhmmmm were to start.. Well, first of all, I'd like to say thank you to CaMama for welcoming you to the forum as well as giving you some great advice.  Thanks CaMama!  You're the best!

A lot of what CaMama said is spot on... I don't think she put it in her post, but she suffers from PA also... seems as though we are finding a lot of people have it, which is great, it helps with the diversity on this site...

I am sorry to hear about your relative and her baby.  It makes me wonder what her rheumy was thinking?  Before I got put on Enbrel, my rheumy asked me if I was pregnant, I replied No.  He then asked me if I had planned to have more children in the future.  Again, my reply was No.  And he said, "Good, because you cannot go on Enbrel if you are pregnant or trying to get pregnant."  I didn't ask for any other explanation other than that since my hubby and I have both been taken out of the gene pool.

I am sorry it has taken you 7 months to finally find a rheumy that has diagnosed you correctly.  I don't know if you are familiar with my story, but here it is:

Oct 2003 - Noticed 4th toe on rt foot swollen and purple.  Went to dr. Diagnosis:  Jammed toe

Nov 2003 - Noticed toe wasn't getting better, went back to dr.  Diagnosis:  Hammer toe, due to jammed toe.

Dec 2003 - Noticed pain in toe was spreading to other toes.  Diagnosis:  Flat feet, you need orthotics.

Jan 2004 - Referred to podiatrist for orthotics.  Did a bone scan.  Diagnosis:  You have multiple fractures in your toes, feet and ankles. 

Feb - Dec 2004 - Underwent MULTIPLE tests, MRIs, Bone Scans, X-Rays, Labwork. Diagnosis:  Neuroma?  Arthritis?  We have NO Idea (that is actually what my podiatrist said).

Jan 2005 - The pain is now in both feet and 8 out of my 10 toes are swollen and purple.  I start looking online to see what I can see about my mysterious pain.  On an arthritis website I find a little blurb about PA.  I clicked on the link and all my questions had been answered. 

Jan 2005 - Took all that I had printed off the internet to my Podiatrist to see if I had diagnosed myself correctly.  His response?  "Why didn't you tell me you had psoriasis?" 

Mar 2005 - I get to see my rheumy for the first time.  Within 10 minutes of looking at the plaques on my hairline, scalp and back and seeing my toes he says, "Yup, you've got PA.  I'd like to start you on a relatively new drug called Enbrel."

Prior to Oct 2003, I had ALWAYS been very active.  I am a 32 year old mother of 3, and I am in the Air Force.  I am an aircraft mechanic, so I have to keep somewhat in good condition to be able to work the long hours, and do a lot of the heavy manual work.  I read all the literature on Enbrel and saw a lot of the sites out there that HATE it and think it's the worse thing for you.  But what it boils down to is what CaMama said, you've got to weigh your options.  There are side effects for everything out there.  I brought these same concerns up with my dr.  I remember the conversation clearly...

"Lymphoma, did you say chance of lymphoma?  Are you kidding me? "  His response, "Rory (my real name), did you take birth control pills?"  My reply, "Yes", Him:  "Did you ever smoke, or have you ever been around 2nd hand smoke?"  Me:  "Yes."  Him:  "Do you breath air that has been polluted with carbon dioxide from car exhaust?"  Me:  "Yes, Ok. I get it.  Everything causes cancer, right?"  Him: "Pretty much.  But with medicine you have to tell everyone that there is a chance, it is slight, but there is a chance.  Tylenol, people use it all the time.  Use it to much and it can destroy your liver.  It's up to you, weigh your options.  Try it, and if it's not right for you, then we can try something else."  So I did.  And since then, 95% of my plaques have cleared up.  My toes aren't swollen anymore.  I can walk without a limp now.  I can stand for longer than 5 minutes.  I can even dance again.  I can chase my kids and my dog around the house and play.  I can work on airplanes and not have to sit down to rest.

I too have a history of bad health.  I have a whole truckload of things wrong with me auto-immune wise.  My dad has high blood pressure.  My mom has diabetes.  My grandfather died of CHF.  My grandmother died of a stroke.  My aunt just recently had a stroke and both my sisters have thyroid diseases (as do I). 

I get bloodwork done every 3 months to make sure everything is going ok with my body and the Enbrel.  If you have a good doctor, he/she will continue to monitor you since you have a history in your family of multiple diseases.

Like my rheumy told me, the choice is yours.  They aren't gonna force it on you.  But for me, it has been a godsend.  I also know people that it didn't do anything for and they are still out there looking.  I wish you the best of luck BlackJack, it is a tough road. I know, we have all been there. 

Please forgive my long windedness, but wanted you to know, that you are not alone in your plight.  We all have very similar stories.  And what works for me, may not work for you.  Hopefully you've got a good rheumy now and they can steer you in the right direction. 

I wish you pain free days, please let us know what you decide. - Duck

Hi Blackjack,

I too wanted to welcome you to HW. I do not have any of the conditions you have. Instead I have severe osteoarthritis in all my major joints. I have had 2 knees surgeries a year ago. The final dx from those is I need 2 new knees. I am 52yrs old. I have constant swelling in my elbows, right really bad and its very painful. I cannot take any NSAIDS, its like drinking gasoline on my stomach. I also have crohns disease and have been on Remicade for 3 yrs every 4 wks.

I have arthropathy of the facet joint @L5-S1 which causes terrific back and hip pain. I had a morphine pump implanted June of 05, to help controll the pain that is all over my body. I do not tolerate morphine so I a cocktain of 4 different drugs in it. Its finally beginning to work. I go into congestive heart failure rather easy on certain medications, all steroids and opiates. My increases in my pain pump are done at only 10% of a noraml dose.

I am monitored by my gi since I am on Remicade and people with CHF have to very careful, some can't take the Remicade because of this problem. I do labs every 4 months to check the liver. My pain dr also monitors me as well. I do feel like I spend 90% of my time wither at the hospital or a drs office, but hey if they can keep me going its worth it.

Depression-oh what a bugger. Yep got that too. I take Lexapro and it really keeps things in check for me. I am not a weak person, you will find we are all very strong peeps, the average bear would not endure what we do in order to have some kind of a decent life. Get to a dr & get your depression under control. You will be amazed at how much better you will feel.

As for the gal that did not order your meds. Well, I just don't know what to tell you there except you will have to keep a check on her.

Again, welcome, hope you will hang out with us. Hugs, Susie

WOW! I'm in need of sincere people caring--and that pocket's filled now. I hope that I can return the love and help.

Well, this note will be short, but I have to post so that you know that you've reached me and given me hope and that I haven't turned a cold shoulder.

I'm just so fatigued, in pain, and overwhelmed. Straydog, I've been treated for depression for the past eighteen years, since I turned thirty-nine. Depression became too demanding a lover, a relationship gone bad. We met when I was seven, reeling with grief and disappointment. I've been called a melancholic--a hard-sounding word, but as good as any, I guess. I don't think I will every completely let that lover go. She's got what this brooding man needs.

I'm being perfectly honest.

I've tried to make my avocation my vocation, to borrow Robert Frost's words, since they hit the mark. And I'm a professional poet and writer--a part-time college teacher, as well. I say this so you know which one of me leans on metaphor. Yet, I'm letting myself fall away from that, somewhat. I was caught up in the "power play" literary writers shove each other to get into--though once I squeezed through that door, I experienced the ugliness of ambition and the various crumbling cliffs friendships sit on. I've been "in" with some successful writers, but I made a good run from them. I love literature and seeing students linger at the end of my class. Helping a student smile about learning and finding that amount of self-esteem he or she's been looking for is a blessing upon me whenever I  get to be that kind of teacher.

A long digression..., but I want to let you know a bit about me.

Anyway, I've had all kinds of meds for depression--and one doctor who's an ambitious @#@#@ and had me in a study without informing me, until he nonchalantly slid it by me. I was more stressed out by him and the drugs I was taking, which were developed and used to treat  pyschoses. When I realized what I was into, I stopped seeing him and quit a multitude of drugs without thinking I should step down from them slowly. What a physical and psychological crash. I cried in bed as often as I could get there--and panicked through the day, as only two close friends cared to care and say they saw what I was going through and helped me. But, I shouldn't blame anyone: I've become a master at hiding my various pains, so, really, who could know what I was going through.

What's devastating about the psoriatic arthritis, which is hitting me harder and in more places everyday, as well as the spondylitis, which has me squirming in pain as I sit here typing, is that I'd just recovered, found strength in myself after four years of coming up from that fall, and I quit a nullifying drug I was taking at a high dose--nortryptilene (sp.?)--and for a month before I was pulled under by the four types of arthritis I have, I was feeling pretty well.

Anyway, I have to go now....The spodylitis is a murderous bonus to my p/a. Someone told me that my neck will eventually lean forward. I don't know about that, but I have to say that last week I took three days off from work--and felt guilty--but I couldn't hold my head up and I had about two hours a day of energy. Do any of you have spondylitis? Do you feel what I am from that darned monster....I was paralyzed last week. Actually, I have been for awhile and still am. So much at once. The p/a, I'm finding out is a fiend: I'm getting familiar with sore eyes and blurry vision some days, a kneecap or a leg or an arm swelling up, a new node somewhere, worsening psoriasis--I have a little hole in the skin of my left elbow. I have to give up leaning on my elbow!

There's more, but....I have four syringes of Enbryl in the crisper, but I can't start it until a sudden-onset prostrate infection gets cleared up, and it looks like it will take that refill to clear it. So, after laboring over starting Enbril, coming to a decision that I have to take it--even though I work in a "sick building," now I have to wait.(Isn't it beautiful how we have to swallow such euphemisms--the building is "sick," not me? There's mold spore in the ductwork and the issue is being dodged for about six years now.)

Heck, a long note after all. Too much whining? I just don't know. Supervision at work is being judgmental and I realize I have to watch what I say. An unwanted and unwarranted job change was already tossed at me today. Man! I had good reason to be stressed about going into the office today after being away from work insanity for five days.

What is it about sickness, that it brings out the worst in employers? It's worse than ironic. People you have coffee with at break time, talk about your dreams and dilemnas with, they always manage to stun me with their hardness and ignorant rush to judgment and coldness?

Sickness hurls us into unforeseen dimensions, and without sharing it with others who are suffering too, you can go mad from the absurdity of the collective mind we all live with and by.

Thank you all, and I apologize if I'm off topic here.

Sincerely and with best wishes, Black Jack

Have I alienated anyone. If so, it's never been intentionally. I hope to hear from you CaMama, and all the other members who have reached out to me. Blessings all, Black Jack