I guess that is all. If I remember anything else I will let ya'll know.
Oh moral of the loooong story... I thought about scheduling RD appts and infusions on the same day, but after today and 5 hours of sitting in her office, not including the hour drive each way... and how messed up my mind process is really messed up after an infusion... I think NEVER!
joonie2009-07-28 22:57:46Hmmmmmmmmm? Well I was not taking pred for six months. I think what ever pain the pred could cause me? Well I do not know if I can relate to that. I guess it is better still to take the extra MTX. Scince they sure need to do something to help you. So we may not understand that the pred is causing you pain. I do understand that I would rather see you get a handle on your RA. You have had way to much swelling. We need to take better care of you Jonnie. So I really hope it helps you. for someone w/ so many issues due to RA.... you would think your RD would be a little more aggressive w/ your selected treatments....
If I were you.... and obviously I am not..... I would opt to be bald rather than have as much discomfort as you have.....
vanity schmanity, joonie.........
the hair loss stops..... take biotin (ask wantto) it helps w/that....
I did not care about the hair loss, my RD cared about it. I did not even bring up that I have a small amount of hair I lose every time I wash my hair or that I can see my scalp again from the front straight to the back. I told her I was all for upping the MTX when she asked, and she said how about 7 pills? I said sure. Then she looked at me and asked about my hair loss. I told her it was not as bad as I thought it was going to be.
I have been really bald from the Arava. I mean not even biotin helped it. Only thing that helped my hair loss on that was to stop it all together.
The problem I have with MTX is that it makes me hurt worse for a few days after I take my dose. It started out with my toes hurting, then my toes and feet, then my toes, feet, and ankles and so on. And now it is my whole body that hurts. It is not in my head. I take the MTX on Friday evening and come Saturday my toes will be hurting and the pain spreads and then come Wednesday the pain slowly goes away. Then the cycle starts all over again come Friday.
I told RD about it all a couple of times, and I agreed to tuff it out and I still am. I have not complained about the pain I get after taking the MTX for a couple of visits now, because I promised I would tuff it out.
Everyone else gets tired and/or sick after taking their MTX dose... me I get more pain. That is my only side effect other than the hair loss, which I do not see as a side effect, just expected.
I wonder if RD thinks it is a osteonecrosis? I did some research on what she might have meant by it was the pred and when I typed in hip pain and prednisone... it came up with osteonecrosis. She was more saying it was the pred causing my hip pain after the x-rays she took... where she said the osteopenia was visible on the x-rays.
Well... RDs office called this morning... she is sending me off for yet another nuclear bone scan for my right hip again. UGH! It will be on August 24th, I believe. Oh Joy! Not! Gotta waste someones day in order to go.
Probably that is what she meant. She probably wants the bone scan before she says the words damage or osteonecrosis. That way she can know how bad it is or if that is what it is for sure. Let us know. Good luck with the raise in MTX. Yeah... I just thought it was odd, that she never once mentioned why and how the pred was causing my hip pain. She just kept saying "oh no it is the pred causing this problem." Or "It is the pred. we have to get you off of it."
RD is aggressive with treatment, it is just that she is scared of me having another TIA and that I am allergic to sulfa... so I am limited in the meds I can take to help control the inflammation. The TIA is why it took her so long to finally up the Remicade another 100mg. She did make it to where I am getting the Remicade every 4 weeks now. So... lets see how that works. She still reminded me about going to the ER if I felt wierd after my infusion and to call her if I go to the ER.
She really does not think the Orencia or Rituxian would work as well for me as the Remicade can and does. I do not know why she thinks that, but that is what she says anyways.
Joonie, it sure sounds like you are having a rough time! I am sorry about that. I hope they find some answers with the bone scan. Try not to worry too much about it, it may be nothing other than a marker. I sure hope so anyway.
I have such a love/hate relationship with pred.... love how it makes you feel when you feel bad/hate how it makes you feel when you have been on it a while and the things it does to your body. I felt that about the MTX when I was on it too. It sounds like its a good thing RD is having you come off of it.
Take care Joonie, and I hope you find some peace.
Hope you get some answers!I am doing well. Thanks for all the well wishes. They seemed to have worked.
Copyright ArthritisInsight.com