I have an appt with my rheum tommorrow and I don't know what to say when she asks how I'm doing. I keep track daily, but I always have pain, always have nerve problems and fatigue. Overall I think I am a little better, although a couple weeks ago I had the worst flare ever and have the RA in several more joints now. My hubby says I do not seem much better but just have adjusted. Should I be seeing more significant improvement if the meds are working? Of course I will tell my dr all this but just wondered what some of your experiences have been. I have been on immuran now for 4 months.
Laker
Hi Laker,
I am new to this board and also to the RA diagnosis. Tonight I was reading through all the posts trying to learn what I could about this disease. I can't help at all in the time frame in which a medication should work or can't tell you what's normal when taking these meds. I do know human nature though.
You sound like me. You don't want to be a whiner and a complainer and don't want your doctor to think you can't handle this disease. Big mistake. I have been doing that for years, have always made jokes, pooh poohed the fact that I felt ill, acted cheerful and happy (even though in the car on the way to the doctor my poor husband was listening to me cry about the problem) and, in general, allowed the doctors to think all was well. It wasn't and they never took me seriously.
Please tell the doctor exactly what you have posted. i.e. that after four months you see no remarkable improvement, that you have progression in your joints and that you have had severe flares. Bring your log with you.
My rheumatologist told me that sometimes drugs have to be changed every few months until you find one that works and when you do, you'll know it. I have no experience in this as I have yet to take a drug, but I am reading posts from all these boards and that does seem to be the case. Perhaps the doctor made this appointment as this is about the time period that she will know if the drug is working or not for you.
I don't know anything about RA. I am just learning myself but from what I have been reading this is so much a disease of trial and error.
Good luck at your physician's appointment and I hope that you find a drug that makes you feel wonderful.
When you get on the right medication Laker you will have noticable improvement as Danielle says.
I've responded very well to almost all the DMARDS and biologics I've used over the years. I always know when my medications need to be adjusted because all of my symptoms begin to return. After numerous years on certain medications (Often less than that) the effects begin to wear off or they don't work as well in my experience. In the beginning it often takes time to find a combination that's right for you.
I'm not saying that you will never have pain and that it's not good to accept and adjust to the disease; but on the right medication (or combination of medication) there will be noticable improvement.
Be honest with your doctor. Telling him that you haven't seen a lot of improvement doesn't mean you have a negative attitude. Your doctor won't think that. It's in your best interest to let the doctor know exactly what's happening so he can work to help you. RA isn't always visable. It's up to you to let him know everything that's happen.
Good Luck!
Simply tell your doctor that the meds are not working!!
New cocktail please!!
Your replies have been very helpful. I do tend to put on a happy face, say I feel fine and keep going even though I don't feel better. I just feel like such a whiney person and somehow sort of hate to admit it's not working. I really didn't know if I should be able to tell much of a difference. Hopefully they will just add another med, there has been some talk of putting me on cytoxan and I don't want to have to resort to that (another reason I hate to admit this isn't working well enough). I'm glad I got your responses before my appt. Thanks again.
Laker
Hi, we've all gone through this and all hate to take 'the drugs' , but you know what we HAVE to take them. Please, know it is so much better that the drugs are available (and lots of choices), you'll be better off just blurting everything you are feeling OUT to the doctor. Read down you list, let the doc know what doesn't feel good in your body, etc. THey really do need to know. I know it is a long process and you do sound very brave, but don't be so brave that you prevent your joints from being protected. When you find the right combination of meds you may be able to reduce or drop something. Please be honest with your doctor. Sarah LyndaJust got back from my appt. - 6 hours of driving for a 45 minute appt and our air conditioning was broken when we got home.
She offered to switch me now to methotrexate and said she would talk to the neurologist to see if he wants to consider iv ig (?) some sort of transfusion(?). I have so much time invested in the imuran I thought I may as well wait it out to make sure it doesn't work. She said I could increase the pred up to 10 but I really hate to do that unless I am really non-functional, I will have to think about it.
She wants me to go to either Mayo or Cleveland Clinic to see what they think and if they agree it is vasculitis, if it should be treated more agressively. Said I may have a type that responds only to steroids. Oh goody. I'm trying to find out if I can cut back to a 4 day week at least for a while. I have a lot to think about.
Laker
I did a little research on treatment for vasculitis and I found on the John Hopkins site that Cytoxan is often used in conjunction with pred as a tx for vasculitis. It can be done IV infusions or orally. Could that be the IV thing your rheumy was talking about?Grammaskittles,
I woke up and remembered it this morning.