I have had to register again, not sure why. I have been to see my rheumy today and I think he knows nothing. I am on Humira and was told by my humira nurse that if I am on antibiotics I cant take my humira. My rheumy said that I must take it with antibibotics????????? I also had xrays for a spine problem and my g.p. said i had a disk problem with my neck. My rheummy said its lower down and my neck is fine. My feet have been a problem and a few of you on here suggested parrafin wax foot baths, I asked my rhemy and he said "oh thats no good just soak them in warm water(tried that and it hasnt helped) he said just keep on doing it????????? He gave me a steroid injection in my bum and now I am in agony all down my leg. I have waited ages for this appointment and I feel so let down. unfortunetly he is the only rhuemy in my area.
I think the rule with the antibiotics is that if you are taking then for an infection than you can't take the humira. I had strep throat a few weeks back and needed an antibiotic and had to skip a week.
I love my paraphin was spa! I have a bigger one so I can dipp my feet in it as well. It only helps temporarily but I'll take whatever relief I can get and it makes my skin very soft.
I'm sorry your appt didn't go as well as you hoped.
Try just heating up a big pile of uncooked rice in the microwave and putting your feet in that. I admit I haven't actually tried this myself but I think it might work. I have a stocking full of beans I heat up and put around my neck and it's yummy. It also doubles as a bed warmer on those cold Canadian nights when my SO is somewhere else!I believe if you have an infection that you are supposed to skip. You could call the Humira help line.
But since you cannot change doctors, I would suggest that you call back and state what you said here. Point out that you felt very confused after the appointment and you want some clarification because heaven forbid you don't follow your doctor's instructions correctly and something awful happened. Just see what happens. I bet they will get a lot clearer. And, I would ask to see the reports and read them yourself. Point out that discrepancy as well between the two doctors opinions and ask that they talk to you and clarify that as well.
I HATE WHEN DOCTORS DO THAT. And, they do it all the time.
Hello,
Was this your first visit with your rd? I ask because my first visit was crap. But, I decided as a patient I was going to take charge of my own health care. I researched as much as possible, asked lots, I mean LOTS of questions on this board and went to him armed with information. My last visit (Monday), I TOLD him what I wanted to do and he did it.
Don't give up and be your best advocate. I can't answer you about the antiboitics. I can attest to the beans in the socks. It is wonderful.
Hang in there!
Lori
What antibiotic was your rheumy referring to? Paraffin baths are supposed to help, also a physical therapist mentioned the rice idea for my hands, 'tho I haven't tried it yet. I don't blame you for feeling let down after waiting for so long. I think finding the right doc is one of the biggest problems we face. Warm water, indeed! he should go soak his head in it, in my opinion, and just keep on doing it. Thanks for your wonderful suggestions, they were great. I am on antibiotics for a UTI . I have been seeing the same Rheumy for about 3 years but saying that with the way appointments go in UK i have only seen 4 times.I have just been to see my G.P. and he reccomends that i go with the Humira nurse and stay off Humira until after the antibiotics. I feel so good today after my steroid injection, the first time I have been virtualy pain free in 4 months.I've had numerous UTI/Bladder infections and stayed on my meds during antibiotic treatment. Maybe it just depends on the type of infection you have.
Nothing major will happen; I THINK; it just makes the healing process slower.
Either way you're in charge. If you skip; it's your choice to make. You're in charge here. Phatgirl is so right. Once my RD discovered I was well informed, he's let me take an active roll in my treatment. 90% of the time I tell him what we're going to do next and he's usually more than happy to go with my recomendations. (Provided they are educated ones and are in fact good options)
Are you on Humira Lovie? Its just my nurse said the Humira and antibiotics butt up against each other and can stop the one from working as well as it should. Because I feel so well I just dont want anything to go wrong esp. so close to christmas
Yes; I'm on Humira and MTX.
Trust me; there have been plenty of times when I've been taken off my meds for other reasons (Other infections); but that was the one infection my RD doesn't take me off for.
I do trust the folks at the Humira hotline; but IF I WERE YOU....I'd just go with what my RD says. Especially if you are feeling good. Being off your Humira would likely not hamper your progress (RA wise) very much) but it might.
I should repeat that this is what I would do in your situation. Other's might not agree; but I have a great relationship with my RD and trust his judgement where my RA meds are concerned.
NOW; if your UTI doesn't clear up after your antibiotic; you might want to stop your Humira and try another antibiotic at that time and see if you can get rid of it then. Humira may be interfearing with the healing process and there fore you may have to stop it to get this cleared up. A UTI infection that doesn't get better can get into your bladder....then your kidneys and that's when it becomes a real problem. Just be aware of that.
Good Luck! I know it's all very confusing....but it's not as complicated as it seems. Over time you'll get use to it and learn to gauge what to do and what not to do. That's where this place and other's like it come in handy. Just keep in mind that even here not everyone agrees.....and we've learned that not all of our doctors do either.
Thanks for your wonderful insight and information, I will think seriously about all you have said to me.I hate it when doctors don't listen.
I have anemia and methotrexate actually kills red blood cells. So while on it, i got sicker and sicker and they kept telling me to take it. I had to stop it on my own only to find out with the new doctors that mtx was causing all my problems.
Im now on Arava and it works just wonderful.
It is interesting about how some doctors think they know what is good forI find my MD treats me like a "china doll" when I go in because of the RA and the drugs I am taking. I find I have to tell then what I want and they they do it. Example: they were not sure I should have a flu shot and I told them the RA doctor said to get one every year. Which when you think about it--it is scary the regular md didn't know it was entirely necessary.
I am playing with my Mthx. I have been having some side effects and we were discussing them. He said I could lower my dosage--I was up to 20 and found the day I take it, it just becomes a non-functioning day--nausea, fog head, etc. Instead of taking 8 pills, I am trying 6-he said I would know right away if it was not ok. I also take Humira. The good part is I am controlling my dosage and I like that. I also insisted on the Leucorovin Calcium.
I hope you can get a better relationship with your RA doctor because you are going to be dealing with him or a long time. Tell him what you want.
From my experience ( and I have been doing this all my life na djust dx in 1991) I have learned how to read my body to a certain degree. Although all my bloodwork comes back ok these days, I can feel something is just not right and that my RA is back ( I am in remission supposedly.
Regardless, when I was on my meds it never dawned on me to stop taking any of my meds, I was never instructed to go off of them either, but keep in mind this was quite sometime ago and there has been more research adn more medications available, especially the Humira, Enbrel, Remicade ect.
I Was ill alllllll the time with my meds, Always a cold, took several rounds of antibiotics to get over a bout with anything requiring an antibiotic. SO to me, this is all indicating that researchers and Physicians have learned over time that it is better to go off the meds for a short time during antibiotic treatment than to have to do several rounds while continuing on the RA meds. All may not agree with that but just by looking back on my experiences that is what I have concluded.
The meds stay in your blood stream for a bit ( at least in mine) and you may feel a bit more like you are in a flare without them but overall for the so called"mechanics" of your body function I would have to say that it would be best to go off the RA meds...but that would be just for me. Everyone reacts differently to all these meds.
I am on AP (antibiotic protocol) which is a low dose antibiotic in an attempt to fight the infection connection as many on roadback.org have resumed normal lives using this protocol. I am also on MTX 20mg and will be starting a biologic in Jan as the MTX only works a little. My doc approves of the AP and understands that I need to keep the swelling down and get out of bed hence the MTX and biologics. There are many on the above mentioned site that continue their regular RA meds while trying the AP.
I want to say how very blessed I am to have a great rheumy and PCP who work together. Most of my appts. are 45 min to 1 1/2 hrs.
Hope this helps some.
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