Currently on Enbrel/MTX, but it is not effective. I arranged with a local free medical clinic to administer Remicaide if I can get reapproved for their patient assistance program so I'm pretty psyched. Except that the doctor who works in that clinic is not up to speed on autoimmune diseases, so I'm having to take a very hands-on approach to dealing with things. We are learning together.
My old Rheumy is 700 miles south of where I live now, and I can't get a Rheumy here to even see me because I'm uninsured. So this is pretty much the route I have to take if I want to get to a place where I can stand to be in my own skin and skeleton (literally). So my question is this: When I was on Remicaide previously, the doc had me taking premeds of IV steroids and IV benadryl. I was being infused at the local hospital, and they had this stuff already, so I never really paid that much attention to what they were doing, except that the benadryl BURNED...but that's beside the point. Obviously a tiny, free medical clinic is not going to have those premeds on tap, so I need to figure out what the translated dosage is from IV meds to oral meds. Is there a website that will calculate those dosages, or what would you all suggest that I do to figure out the correct oral dosage? Of course...first I have to figure out which steroid he was giving me and what the dosage was that I was getting via IV....grrrr.
I have scheduled an appointment with my old Rheumy for when I go down to visit my family over Thanksgiving so I can get the IV dosages from my old chart. Chances are good I won't actually see the Rheumy, but rather, will see the PA and I'm not sure that she will be able to just calculate this in her head. Actually, to be completely honest...I don't know if there is even a difference between the IV dosage and the oral dosage. And now I'm rambling. Anyway...any advice, or ideas would be greatly appreciated.
This is a great question - I’ve featured it so it will sit at the top, and there are plenty with expertise if you have a couple of days I’m sure they will chime in
sybil, thanks for responding. Every time I try to call my old Rheumy I get a member of his staff who are all, in a word, nitwits. They will not leave a message for the PA or doc, but rather, connect me to a very sweet nurse who barely speaks English. It is...unhelpful. She is kind and sweet and all those things you WISH all nurses were, but I can't understand 90% of what she says, and to be truthful what I do understand usually has nothing to do with my question (I don't think she is understanding me any better). I used to live right on the U.S./Mexico border and my Spanish is okay, but not detailed and specific enough to actually ask and understand medical stuff. I do not have the Rheumy's email address.
Jen, thanks, also, for responding. I have some time because I'm just starting the process to get approved for the Remicaide patient assistance program again. Hopefully someone will just happen to know the answer. You never know! That's why I posted this :)
Ask a pharmacist for the conversions, he'll have them at the tip of his tongue..
Frankly I can't believe I'm answering. This whole thing is a bad idea.
If your free clinic doesn't have or doesn't know what the premeds or have no plan of administering them then there sis absolutely NO WAY they should be administering the remicade. Its has become increasingly rare that remicade is administered anywhere BUT a hospital infusion center.
Unlike many of the other meds we use serious reactions to Remicade months or even years after the first infusion. Regular infusion centers are not equipped to handle these type reactions (we are not talking a rash....) Even if you avoid reactions the infusion of remicade is absolutley critical to its success. The pre med period followed by the flushing is very specific. The rate of infusion based on a number of factors is critical as is the equipment used to infuse (this isn't "plug and go") Then there of course is the mixing and preperation of the remicade. The infusion nurse/pharmacist has to be specially trained. This stuff is "made" it doesn't come RTU.
All that being said the clinic may be able to do all this in which case you don't need to worry about premeds.
You will have to worry about Remicare after the first of the year however. They won't commit as to whether they will even be around. The ACH is a bit confusing on this point. You see Its illegal for any "assistance copay etc" to be offered with any government sponsored or participating healthcare if you opt for an exchange policy and recieve a tax credit, you technically have a government funded and are ineligable for the assistance programs. The the drug assistance programs are prohibited from providing assistance when the patient is eligable for federally funded programs (up to now just medicade, medicare etc) The don't really want you to know they take federal dollars to help you out......I understand En-courage has a plan Humira does as well that will allow continued help so long as your insurance allows you to choose your pharmacy. (something you NEED to have the flexibility to do)
lamb...once again, you are potentially saving my life. For real this time, not just my continued mental well being. :)
I will print this response out, take it to the clinic, and see what the doc thinks. Once he sees all this, he may renege on his offer to infuse. Its funny...my old Rheumy's office infused Remicaide (charged $600 each time JUST for the infusion), but gave oral premeds instead of IV ones, and merely hooked people up to IV's and walked away with no monitoring. I know this because many times I sat and watched it happen while waiting to see the doc. They liked to use the infusion lab as an additional waiting room....
Now, when I was infused at the hospital, they charged me $75 each time (MUCH BETTER!!), and continuously monitored me. Gave the premeds via IV, then took blood pressure, pulse and temp every 15 minutes. Silly me...I thought they were being overly paranoid. While I know that people can develop issues at any time while taking Remicaide, I never had a single, solitary infusion-related issue with it. In fact, I was so incredibly amazed that by the end of the first infusion, my psoriasis showed a marked improvement, and by the next day had cleared by about 75%. By the day after my second dose, I had no visible signs of psoriasis. Seemed like magic. When I found out I had to go off, I (literally) sat down and cried because I knew that nothing else I've tried worked nearly as well for me. I even asked the patient assistance program if I could learn to give myself an IV and infuse it myself. They were willing (strongly recommended against it, you'll be happy to know), but still had to ship to a doctor's office, which (at the time) I didn't have so I decided against going that route.
I am getting patient assistance through the Johnson and Johnson foundation, not Remicare, so I'm not sure if this will be a problem, but its good to have a source of knowledge to check in with. Again. Thank you.
Like I say how you get the infusion is critical. At the right rate so it can be absorbed instead of dumped (my theory BTW is to fast cause the reaction) and the drug does wonders. Too fast and its in the toilet by morning. The center/docs here will actually slow the infusion rate further if it doesn't seem to being the job before adjusting dose or meds.
Followup: Went to the clinic today, and as it turns out they have infused Remicaide before, so I'm all good on that point. However, I got some strange blood results. 3 weeks ago (before I was sick) they drew blood, and did a CMP and CBC. No big deal, right? Except I got the results back today and he said that 3 weeks ago my white blood count was over 15,000. Normal range for WBC is 4,300 to 10,800. Now, my question to the doc was why would I have had an increased WBC when I was perfectly healthy. His answer...I don't know, but it probably isn't good. nice.
So...now I am sick, he didn't take any blood, but said to go to the ER if I develop a fever over 102 (my temp has ranged between 99-100.2 for the last couple of days). Oh...and not to take the Enbrel shot I'm scheduled for tonight, but to still take the MTX tomorrow. He gave me some long complicated explanation as to why he felt it was a bad idea to give me any antibiotics, but gave me an antihistimine to treat the sinus infection that I've acquired instead. He said something about the antibiotics may not work and will only kill off the weak bacteria, leaving the strong to develop into an invasive bacterial infection or some such thing.
During the appointment, I shoved up my long sleeves because I was hot, and he stopped, mid sentence and said, "this is new." I mentioned in an earlier post that I've been getting lots and lots of new patches of Psorasis, and apparently he noticed. So then he insisted on looking at my legs, which are also getting lots of new patches and asked, "are you even taking the MTX and Enbrel?" He seems very concerned that the Psoriasis is flaring up so bad all of a sudden, and gave me another dose of Prednisone to take (20mg 2x per day for 5 days). He feels that treating the PsA and Psoriasis are his first priority, and wants me to get on the Remicaide as soon as humanly possible. As to the muscle spasms in my back, still no pain killers or muscle relaxers, but instructions to go to the ER if they get "too bad."
Should have mentioned that the clinic has a nurse who is aware of and trained for the Remicaide protocols. My head isn't working right tonight. :)
After further research, it appears that a WBC of 15,000 or so is pretty common in people with autoimmune disorders, so I'm just not gonna stress about it. Now if I can just clear all this creeping crud out of my head, I'll be in good shape. Think I'll try to go to bed early tonight (try being the operative word in that sentence...)
I know this is a bit of an older thread but wanted to say that stress can cause inflammation and raise the number of white blood cells. I've seen people in the hospital after a fight with their significan other with a wbc of 14 or so. It can happen.
Thanks, Sunny. I have to admit, there is a significant amount of stress in my life, though quitting my job helped a great deal in the "confrontations-with-angry-people-on-a-daily-basis" kind of stress. Now I stress about how we'll pay our bills each month...so I'm not sure which was worse. :)
Funny I haven't checked my mail for days. I look in and the first thing I see is you two discussing stress, it's fate. This has been the worst week for stress with my spouse health issues as well as the money issue thing and I can barely walk..... my legs are so weak, and of course all the oldies but goodies are showing up. The twitching, muscle spasms, inflammation, sore muscles, swollen and sore joints and the horrid fatigue for the last three days . My vote goes to ........the ever present stress.
Hey CL....been missing you! My step-daughter, her boyfriend, and her two toddlers just left after 2 days here. OMG I forgot how loud, testy, and frustrating toddlers can be. As soon as they walked out the door I took a vicodin, a flexeral, and a migraine pill and I'm getting ready to go to bed. Yikes! Oh...and my house looks like WWIII took place in my living room. My kitchen is the grossest I've ever seen it...and one of the grandkids had diarrhea all over the bathroom floor. Can this day get any worse? Oh wait. yes, it can. My husband feels like it isn't his job to clean up after any of it, and was barely engaged with any of them (including the constantly screaming kids) for two days, and my son is ready to quit our family because my hubby is telling him he has to clean it all up (plus his bedroom became the room where the guests slept so he hasn't gotten a decent night's sleep all weekend).
Added to which, at the board retreat for the school board (I'm a member) yesterday I stupidly jumped out there and volunteered to chair two more committees. I should just be shot. Now I have a meeting tomorrow to revise the mission statement (chairing that committee), a fundraising committee meeting on Tuesday, a regular board meeting on Tuesday....and I volunteered to be the ONLY person to compile and flesh out the goals and action plans for our 5 major areas of "needs" on our strategic plan (obviously chairing that little endeavor as well). And the nonprofit my parents are starting is now officially incorporated (I did that), and now I am applying for their 501(c)3 status. Thank God I already wrote the bylaws, the articles of incorporation, and many of the necessary policies (conflict of interest, equal opportunity, etc) so I won't have a whole bunch of that stuff to do. All this and my damn short term memory is shot. What in the heck was I thinking???????????????????????????????????????????????????????????????????????????????????????????
Oh yeah...I forgot....the clinic still is blowing me off, so I have no remicade infusions, no enbrel, and no MTX. The only thing I'm taking that may have any effect on the PsA right now is the dexamethasone and the sulfasalazine - which is doing its job too well on the IBS so now I have the opposite problem from diarrhea. I think I'm going to the main office of the clinic tomorrow and camping out until either 1) someone sets up my appointment for infusion, or 2) I have to leave to go to my committee meeting. Then I'll go back Tuesday....and Wednesday...and Thursday....and on and on until I get the appointment. It has been 3 weeks since my last Enbrel shot and I'm getting really worried about the whole PsA thing. My Psoriasis has exploded (again) also. I'll try to get some pics and post them so you can see how much worse it has gotten.
Oh my, I was exhausted just reading your last two posts lol. I hope things turn around for you at the infusion clinic and also hope the cleaning fairy visits tonight while your sleeping. You certainly have your hands full, its wonderful to some extend but hope you didn't take on too much. Wishing you the best of luck, take care
thanks Easternlady. I'm exhausted myself (but didn't get to bed yet, as you can tell from the fact I'm posting again). I've decided to tackle the kitchen tonight. Hubby cleaned up the mess in the bathroom (mostly), and I'll leave the living room until tomorrow.
