New here...questions.... | Arthritis Information

I came across this forum in my hunt for costs on meds, and wow, y'all seem to be a great resource.

I was diagnosed with RA in the post partum period after having my second child. It's been about 4 months now that I have been dealing with this, and getting the run around from Drs.

The first rhumatologist I saw told me I had to wean my baby ASAP, or he wouldn't help me. Unfortunatly due to the circumstances around my son's birth, and everything that happened afterwards, weaning cold turkey was IMPOSSIBLE (idiot Dr doesn't seem to be able to get this through his thick head). So we worked out a "plan" for two months...where he would "allow" me to take painkillers and prednisone (5-10mg a day, 1 vicodin a day...THATS IT), since I refused to go right on either Remicade or Humira (seemed a little extreme!!)

Of course that solution isn't working, and I'm in so much pain I can hardly get out of bed in the morning. I am in the 4th month of "weaning" (long story short, I had enough milk to feed triplets, and because I get infections easily, I had to wean very VERY slowly....or else I would have ended up in the hospital, which has happened in the past), and am about finished. However, I called his office last week to see about what my options are once I'm fully weaned, and the ONLY option he is "extending" to me is Humira, with nothing else.

Seriously. He doesn't believe in painkillers, says that the "pain" I am feeling is all in my head, and I need anti-depressants, not painkillers (which I am already taking Zoloft anyways....doesn't seem to be helping the pain any!!)

So, I fired him. Yesterday I got a copy of all my medical records, and his "letter" to my "future" doctor. The man has ALL the facts WRONG! He has the dosages on my meds wrong in this letter, the dates of my OFFICE VISITS WRONG, and even how he examined me WRONG!!!! He said I showed NO signs of RA, and he thinks it's just post partum hormones, and I'm "seeking" painkillers because I refused Humira or Remicade. To make matters worse, he didn't even mention the nodules (sp?) that I have on both of my ankles that I pointed out to him (these popped up about 3 weeks after my joint pain started).

Is there any recourse to all of this?? I am so angry about it, i cannot see straight. I have an appointment with a new rhumey on the 2nd, who is HIGHLY recommended (took me 3 months to get the appointment), but I'm afraid he's going to think I'm some sort of lunatic after getting this letter from the first doctor I saw. Also, should I call my GP and tell them to NOT refer patients to this guy anymore? Just because he seems like a moron, and can't get the facts straight??

More backstory....every time I have called with a question his nurse has told me I'm putting my baby in danger by continueing to nurse (I can't control this!!), and that i need to "get over" my breastfeeding obsession. WTF?! She actually told me that I was harming my baby by NOT giving him formula, because formula is FAR superior than breastmilk, and I'm just stupid if I don't understand this. This is also the same nurse that told my PHARMACIST not to give me my refill of prednisone, because I was on Humira now! (not true...haven't ever taken a shot of that!!). They also were just going to "call in" the humira for me, and expected me to inject it myself AT HOME for the first time. I'm not a nurse, I don't do shots, I have NO FREAKIN' clue how to give a shot!!!

Grrrrrrrrrr. I just don't know what to do.

I know this has GOT to be RA...the symptoms are all there, it runs in my family, and when the weather gets colder, I get worse. I just think the RA factor hasn't shown up in my bloodwork yet, because I've caught it so very early.

Sorry this is long, I hope it makes sense. I'm just at my wits end. I shouldn't have to suffer and be in this much pain, should I?? (the Dr feels I should)

Thanks!

Kindly send a copy of this doctor's summary of your medical history to the state medical review board along with your own letter stating the true facts.

It is cruel to be treated that way. I have seen some doctors that do that. It called "blame the patient." Nothing that he or his nurse are saying makes any sense. You don't pull someone off prednisone the minute that you start Humira. It takes awhile for Humira to kick in.

And, as mothers, we all know that breast milk is still highly superior to any formula. I wonder if this nurse has any experience herself. You are not stupid and you also have a choice over your body and the medications.

I think if you will take the time to write up all the contradictions that you have to what this doctor has said and then present that with your records, then you will be fine. The truth is in the scientific evidence of your condition.

This was a really, really bad doctor. I really think you should have a talk with your GP and OB/GYN and state how dissatisfied you are. But really, reporting his behavior is going to do the most good.

And, not to have you come in and show you how to do the shots is just ridiculous.

Try this. Have your new doctor read the notes. Wait. See what he has to say. If he seems to be taking this doctor's side, then pull out your list of corrections to the record. A good doctor can usually spot a bad one right away.

MsMidge,
WOW... what a horrible time you are having. First, I would definitely call your regular MD and tell them what you just said. It's so aggravating to have a doctor that doesn't listen. Sounds like you are atleast going in the right direction with a new rheumy. The prednisone should be helping you control the swelling. You said you are taking 5-10 a day. You should be on a plan that keeps you on 10 or more a day for a while. You should be able to see some improvement if you don't adjust the dosage downward and stay on that one dosage each day. As far as putting you on remicade infusions so early without even trying an alternative drug, such as humeria or enbrel (with methotrexate) is a red flag where this doctor is concerned. He isn't listening to you. I have a great primary care doctor that is involved with my Rheumy, and she knows quite a bit about RA... therefore she can explain to me where the RD is going with my treatments. Hopefully you can discuss this with the primary doctor. Sounds like you are on the right track getting a new RD.. I don't know how all these meds interact with breast feeding. You may want to use the internet and see what you can learn, since the old doctor is such a pain!
Good luck... and you have come to the right place... so many great people with much info to offer you!! Welcome!!!
Oh wow...that was so fast! (the replies) I ran off to eat and feed my daughter (my oldest)

Well, see the thing is, with the nursing and medications, I shouldn't HAVE to wean really. I have an entire book on medications and mother's milk, and I actually took it WITH me when I first saw this moron. He discounted it saying it wasn't "up-to'date" research. It was right then and there I KNEW I needed a new Dr. (I got another refferal from my OB/GYN and my neurologist that afternoon...I just had to wait 3 months to get IN because apparantly the guy is really really good). This Dr sat there and told me that taking Tylenol would harm my son, because the amount that gets into breastmilk is harmful (um, okay, my baby was sedated when he was born, how is some tylenol going to hurt him, when he's already been on morphine in his young life!!! He was sent HOME from the hospital on tylenol for his first week!! Thats another story though). So yeah, this guy's a real gem.

Um, no niether of the nurses in his office "believe" in breastfeeding, and he doesn't either. He said his wife didn't do it, because they felt formula was a superior nutrion option for their kids. Which is fine, everyone has their opinions. I'm not one of those "I have to breastfeed" people, it just worked out that I am bessie the moo cow when it comes to making milk (I make TOO much milk, I don't actually nurse my kids, I've always had to pump and bottle feed, because they would never be able to empty me, and my body doesn't know when to stop producing milk. Example....when I first was diagnosed with the RA, I was pumping 90ozs of milk a day. My son was only drinking about 25ozs a day. Yeah.....there was NO way i could quit cold turkey. I think my breasts would have exploded!!)

I don't have a problem with weaning at all, I know ultimatly I need to take care of myself, and get on the right combination of medications. However, I don't feel that going straight to a TNF blocker is the right option at first. (my insurance won't cover it anyways yet, I have to "exhaust" other resources before they will authorize it...which is fine with me) I told him it was going to take some time to wean, because I have to do it slowly because of my past history with mad amounts of milk, and breast infections (which I am guessing could be worse with the RA now). For some reason, he didn't seem to understand this. It was like banging my head against a brick wall.

I now have enough milk stockpiled in my freezer to get my son through the first year, and if he has to have some formula, fine. But I was determined to get him to the 6 month mark, so he would be able to catch up growth-wise (he was early, I had a VERY difficult pregnancy, and it was touch and go when he was born....scary!!), and get on the charts. I've had a lovely chat with my OB/GYN (who is amazing) and am on a 1-month plan to be completely weaned (I'm still at 40ozs of milk a day...it's taken 3 months to get from 90 to 40). But that wasn't good enough for the other Dr.

I don't get it. I mean, seriously, how do these people get off being in practice?! His partner is actually worse too! He was out of town last week, and I called to find out how much ibprofen was safe to take in a day, and the other Dr in his practice said I shouldn't be taking ANYTHING, and if I'm so "adamant" about nursing, then I just have to suffer the pain because I'm too stupid to listen to what they are telling me I need to do. (or at least, this is what the nurse told me he said!!)

Oh, and the whole painkiller thing. My god, I got stronger painkillers after I had my baby, and was pumping milk more often, so the drugs were more potent in the milk!! (hydrocodone has like a 6hr half-life....so if I take it right when I pump, and then I wait 12hrs to pump, there's less than .01% of the maternal dose....which my pills are 2.5/500 anyways...and I only take half. It's SO small!!!)

Gosh, I'm sorry this is all so long. I hope I'm not boring anyone with my story. My poor husband is just at wits end because there's nothing he can really do about it. :(

My other question....why did he start the prednisone? I was speaking with my uncle who's a surgeon, and he thought that was a stupid treatment course....he was shocked I wasn't given Celebrex instead. *shrugs* (which is fine for nursing.....even HE knew that!! And he doesn't deal with pregnant patients!!!) He said (my uncle) to just pop ibprofen like it's candy and keep heavy food on my stomach until I see the new Dr (he tried to get me in sooner, as they are friends, but this guy is SO busy, he couldn't get me squeezed in any sooner!! ) It takes the edge off, and I just take the vicodin at night so I can sleep (with mass amounts of benedryl. helps dry the milk up)

God, I feel like a pill store!!

Oh, yeah the prednisone....I take 5-10mg, because I sometimes forget to take it at night. I take 5 in the morning, and try to remember 5 more at night. I'm taking so many damn pills, it's hard to keep up!!!

Thanks again for all the replies, and shoot, for just letting me vent about this. It helps to be able to type it all out (even though the typing hurts. lol)

Yes, I have already requested a complaint form from the state medical board, I did that last Friday after the nurse told me I was an idiot for insisting on being a "breastfeeder" (which really irked me...It's like she was labeling me as some freaky bra-burning moron!!! I wasn't given a choice when my son was born...the NICU sent me home with a pump, and a log, and really pushed me to do it. They said it was the one thing I could do to help the little guy get through the rough spot he was in...I never dreamed I would end up with so much dang milk!!)

:)

Thanks again

Hi! So sorry you got a dumb *&% for a doc. My response to you was going to be pump all the breast milk you can and freeze it for your baby but it sounds like you already got that covered. So now you can take more pain meds if you need them. Can you go back to your GP or OB-GYN and maybe get a refill for something to hold you over until you can get into to see the rheumy doc? I would also ask them to give you something like relafan or celebrex to help with the inflammation and pain.. also....I take cymbalta (anti depressant) which also helps with the pain of RA. If that doesn't work go to urgent care. That is where I got my RA diagnosed. He gave me prescriptions and a referral to the ra doc. I hope things work out for you. It is hard enough to take care of a baby being well. Good luck and good vibes your way.

I would call your GP to get them to stop doing referrals and also report this idiot to the state medical board and to the AMA if he is an AMA member.

I simply can not believe the way people treat other people nowadays. I agree that going to a TNF blocker right away is ridiculous. That should be done after all other options are exhausted. My insurance wouldn't cover my Humira either til everything else possible was done.

Hopefully your GP or your OB/GYN can give you the Celebrex til you get in with your new and improved RD.

Hang in there! Thinking good positive thoughts for you!! Vent anytime! I think we all have done it at one point or another here.

I wouldn't bring the letter from the current RD to the new RD. Just start over. Tell the new RD that you didn't get along with the last one and you needed to find someone who fit your personality better. YOU can pick up your records from the old one - don't let the old RD fax them to the new one. You control it (if there's any that you even want to pass on).....

Personally, I'd just start over. Rheumatology is not a black and white field....it's "littered" with opinions. Some RD's are better than others.

Good luck!