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!
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.
You asked and here goes; When I started Remicade 3 yrs ago I had terrible veins to begin with. After doing some infusions and the nurses becoming very frustrated because all my veins wanted to do is blow, my dr rec a port be put in my chest. This decision was made after it appeared I would be a lifer on Remicade until something else came down the pike. Keep in mind Remicade is the only med I can take. I did have a terrible reaction on my 3rd infusion, Remicade site says that is when it usually happens and it happens right after they increase the rate of flow. I fit the picture perfect. I was given iv benadryl & soluable medrol immediately. Waited a awhile and resumed the infusion at a lower rate. From that point on I am given pre-meds and have not had one problem. I did a little research and found that Imuran is also given for arthritis. By the way dogs are given Imuran for arthritis. When I first stared Remicade not only did it help my gut, but it also helped my joint pain for a long time. Then the OA kicked in full force and Remicade does not help OA.
The only pain I ever had was from multiple sticks, a nurse pushing the iv pre-meds too fast. My veins actually got burned once from a nurse pushing the benadryl too fast. An area of veins turned beet red and it was weird looking. The Remicade is mixed with your saline drip so there is no burn there.
Do not expect immediate results from the first or second infusion. Most can tell a difference after 3rd infusion. I have rarely heard of peeps getting good results on 1st or 2nd one. Lets hope you are one of the lucky ones that do get immediate relief.
The infusions for me last 3-4 hours, due to pre-meds I take a long nap. Be sure to take a book or something in case you don't fall asleep on your own. The nurses monitor your temp/bp and iv site every 15 mintues the 1st hour. They are in there messing wih you every time you turn around. They will ask if you are doing ok. So take something to entertain yourself with. I drove myself until the 3rd infusion but I no longer do it now.
If you have a reaction on your first infusion don't panic. They can give you benadryl and soluable medrol and you will be fine. Insist that your dr tries it again with pre-meds. On the cd board I have read some peeps reacted on 1st infusion and dr refused to let them have anymore. Thats wrong, they need to be given pre-meds. In fact, I don't know why they don't pre-med everyone thats on it.
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)
Hi Black Jack and welcome to Healing Well.
I'm so sorry to hear your experience these last 7 months. Unfortunately, most of us here (if not all of us) can releate to your situation AND pain!
You have done the right thing in your continue search for the right rheumatologist. So many of us have limited choices and have the same problem with them. They all want to "start from scratch" and pooh-pooh other doctor's diagnosis. My new rhuemy (because my old one left the practice) did the same in wanting a dermatoligist to "confirm" my psorisis after all these years, and the dermatologist did the same thing yours did.
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.
awe, thank you so so very much. that means a tremendous amount to me. i wish you & your Gracie & family nothing but the best in 2006.
GodBless, Take care,
Hello, my friends. Erin, I didn't thank you in my last post. I want to apologize to all of you for being a bad correspondent. I am just "dazed and confused." Tonight I turned up Leonard Cohen's cd FIELD COMMANDER CODY and expected to share his immense sadness. But I broke down. I'm starting to cry now. darn. CaMama, you tuned in on my depression. Well, it and I have been kicking each other around all my life. I've been on many different meds for about twelve years. (I had many years of self-treatment. Thank God my wife is a forgiver. I'd always been able to jump safely from whatever wire I'd been dancing or dying on. It just kills me: I had this depression behind me for a good month before I came down with p/a. Have I mentioned that I have ankylosis spondilitis? L4 and L5 disks are bulging; cartilage evaporating and pelvis bone deteriorating. As happy as I am with my rheumy, he acknowledges that my neck is stiff in the morning. "Stiff!" Pain and not being able to hold my head up. Last week I took Wed, Thurs. and Fri. off--to have a long weekend, to try to get my footing. I also have tendinitis and a fourth arthritis--I didn't care to remember it.
I can't forgive a great portion of humanity. Leonard Cohen made me think of a duality with his words tonight. He sings of "the broken-hearted many, and the open-hearted few." I don't want to offend anyone and add those who don't belong on my list, but we are those people, no? I've listened to those words at least fifty times, and only tonight did I realize that it is often the "broken-hearted," or, let's say, those who suffer, who are the "open-hearted few." I'm privileged to find all of you. I work with a lot of broken hearts and they are hard as my bones used to be.
This p/a is horrible: one day my a leg swells; often now, I have pain, swelling, and a little trouble seeing; my right forearm is out of its socket and I try to go on as I always have--strong, a good work ethic, but I pay for it. My right index, middle, and ring fingers are stiff and painful. My lower spine hurts so bad tonight that vicadin can't relieve it--the pain has traveled down my left leg all day. I don't know how some of you do it, but I hoard my vicadin and don't take what I need. Doctors just don't like to give me pain killers. Is it because I "put on a happy face" and pretend that I can handle whatever comes my way? My rheumy refers to "stiffness" and I wonder if he's ever known real pain? Right now, I hurt in many places; I'm fatigued; I'm lonely; I feel as though I aged into a seventy-year-old man who's woken up on a bench under the El in NYC on a mid-January afternoon. When my father died at thirty-eight of a heart attack, I lost my man, my hero, a love that's irreplacable. He had three brothers, but none of them stepped forward for my brother and sister and I--though Uncle Davy tried, but he was so far gone into alcoholism that he'd lost his job soon after my father died. When my grandmother died, he ended up sleeping on that bench I mentioned above. What a tragedy. My mother, who has suffered a lot of pain in her life, turned bitter very young and she became a true sociopath. That's a story for another time, perhaps never here: you all have your own histories, for sure. But my mother inflicts pain in all its guises. I turned to loving (with an unavoidable undercurrent of rage and self-pity) and I never was able to save her. She lives now as King Midas did, unable to hold any living thing. Okay....I'm the complainer on this site, aren't I? But I'm scared as hell. I have depression, liver that makes bad cholesterol and I keep the ratio of good and bad in check through meds, since I can only lower the bad (There's no good in me! Laughter.), in order to keep the ratio right. I mentioned to my supervisor that my eyes sometimes bother me and, and don't know how some people shoot right for your gut, how they seem to do it instinctively, but he said that maybe I should not work on the road, i.e., driving four days a week. But as my wife says, if I were taken off the road, I'd still have to drive from Branford, CT to Hartford and back everyday--a good eighty-six miles. (There, Erin, I didn't forget your question about whether or not I live in the U. K. Well, I have to add this: I'm a bronx boy, projects in the fifties, where I loved friends of any race and religion they happened to be. My first girlfriend was black. We held hands walking to and from kindergarten. Erin, there's nothing like growing up in NYC without prejudice and what a time I had. The sixties and early seventies were youth- and people-friendly years. What's happened? No one has enough and they envy what the other person has. When my first professional chapbook of poems came out, a close friend--a full professor, where I worked as a part-time adjunct in the English dept., actually said he "envied" me. I knew that was the end. The word passed into me like a rattler. When my second chapbook came out, he turned his back on me. I tried to soothe his ego, but I let go, eventually. Let me tell you: there are power circles in every field. I was in with a few groups of big-crap--whoops! I mean "shot" writers, and I learned that too many were businessmen and women; I was into writing for the love of words and communicating feelings and thoughts as one. The only way I can relate to the world. I can't be either emotional or intellectual alone; the two are married in me. Well, here's a big crisis today, besides the fact that I am constantly thinking about why I can't get enough pain relief from doctors (I have a prostrate infection, by the way, and it did not clear with fourteen days of Levaquin. I'm continuing it for another five days and then in to see the urologist. What the hell will take place at that time. Doctors, doctors, labs, labs, x-rays, x-rays, pain, pain, new symptoms, unsympathetic supervisors, working full time and teaching one course, which I love, but I can't keep up the pace. I am so tired, so stressed out, so wanting to have the time I need to adjust to what I've become, and what's to come. I'm fifty two and I've worked for money since I was thirteen. Always excelled, but the rewards didn't follow--likely, because I'm an individualist. I don't carry "yes" on my lips and I don't like clicks. I like people and Christ and whatever sect and race kind people are; I like to give away whatever I can. Anyway: I received a call fromt the editor of a national literary magazine. It gets around and the editor has turned it into a well-known literary venue, where top poets publish. So, it has reached its twenty-fifth anniversary (I'm not even sure of the age!) and out of thousands of poets who have published in it, forty of us have been picked to reappear in its anniversary issue and we are further blessed: we are each writing a few paragraphs about our lives as writers. It's really great....I guess. You know, I can't make contact with the editor. I am so far under that I can see letting this used-to-be-golden-opportunity to open myself to others--and have them open up to whomever, as a consequence of my writing....Well, I don't know why I won't allow myself any joy about this, and I don't feel any accomplishment, either. I am afraid that I am going to remain stunned in my new life, and say, "the hell with everything. Nothing means anything to me anymore." I don't like what's happening to me, and I know that a key to my living again is to leave my full-time job. Yet, I've joyfully invested so much in my children's lives that I'll remain broke into my next incarnation. I feel like a man in a coma dreaming that the medical establishment, my supervisor, et al, suddenly realize that I am alive and pleading for humanity under my shroud of outward unconciousness, that my tears have carried my song of lament, and they realize they know the words and the tune--it is in their souls too. And as they look upon me without judgment, without fear, I wake up. More nonsense, huh? I am glad you are out there, my friends. I fear that, however, that you are becoming sun, and I am rain. Black Jack