Hello, I am new to post but have been reading messages for some time and I like this board so thought I would give it a shot to ask a question.
I am looking for advice on how to approach my next RA visit. Here is the situation. I have had RA like symptoms for approx 6 yrs, however, its been really bad the last 2 yrs. 6 months ago I was seeing a RA who treated me with MTX, Prednisone and several NSAIDS but nothing really seemed to work. She asked me to get second opinion at Cleveland. They ordered MRI of swelling in left hand but said could not definitively dx RA. RA factor negative (positive only once in past), sed rate normal but CRP very high. MRI did not show definitive synovitis. Thus, RA said nothing wrong with me. I went to primary physician, he's upset, starts trying different things to help me (like colchicine, etc).
Now, 6 mos later, I have been out of work for 2 months due to terrible pain in most of all major joints and swelling in BOTH hands is significant. Went back to Cleveland and Dr noted swelling in both hands and ordered MRI's again. Now they come back as synovitis WITH BONE EROSIONS. My primary Dr gets report and advises its obviously best to see RA again to possibly start DMARDS and/or corticosteriods ASAP. He wants me to see previous RA since I already established a relationship.
I am open to advice on how to approach the RA in my next visit. In my honest opinion, I am EXTREMELY upset with the RA because he allowed this to continue and now bone erosions have occured. However, I desperately need treatment for swelling and need to get to work to support myself.
So, any suggestions towards an approach and/or medications I should suggest would be helpful.
I am allergic to plaquenil and already tried methotrexate.
I don't think your RA treated you very well at all. Frankly, I would want to go to a different RA. Just have all your records sent over ahead of time. But you need treatment. It sound irresponsible of all the doctors involved in your care. What century are they living in?
You do not have to have it show in your blood work or as erosions before they start treating you. I was three years into this before xrays showed any RA. If my doctor's had taken the same approach with me as yours did, with the other complications I have had, I just wouldn't be here.
The only time I've had this kind of mistreatment is when I was on a HMO. Your primary doesn't sound too bad, but the RA and Cleveland did not do their job.
I think you should raise a fuss and get into a doctor pronto!
One more thing, you asked what you should say to your rheumy next. One list all your symptoms and how often they hit you. How much is your life diminished by time? How are you affected at work and at home?
Also, go out on the Internet and look up RA and see what all applies to you. It might not be RA, but a lot of sites have questions listed to ask your doctor. Being informed is essential to making doctors respond to you. If you find something really applicable, then print it out and take to the doctor's visit with you. Go with a list and don't leave the office until they answer everyone of your questions.
Sorry, it makes me really angry when doctor's ignore someone's health until they have permanent damage. It is so unnecessary.
Good luck and keep us posted.
Also, since you are already not working, go ahead and file for disability. They will require a medical review during that process. If you doctor's know this is going to be reviewed for possible disability, it might help wake them up a little. You should file with Social Security and your state office. You might get some financial help while this is being sorted out.
Then, you can possibly go back to work after they get this under some kind of control. In the meantime, you have started the ball rolling in case things get worse.
Deanna, I appreciate your advice. It has been somewhat of a oddessy that I have been on and I feel that I am part to blame for the lack of diagnosis. I just kept taking aspirin, sometimes up to 6-8 per day, as the joints hurt and then work, work, work, work. I should have been more "informed" of my own body's pain. However, I agree that both Cleveland RA and my local RA aren't treating my symptoms properly.
I think your idea of putting together a list of symptoms, life dimished and how it effects work/home should help me communicate to them what is happening.
My mother has auto-immune issues (they both know this, sigh) and she has done some really good research into various AI diseases. Thus, I feel that my symptoms point to RA, especially when like I read articles in eMedicine or Google, etc.
They both focused on how my RF was negative and thus I should've have RA. I have been reading about seronegative RA and quite frankly, it seems like I fit the PERFECT pattern. It sounds like I need to take this reasearch and my own info re my pain, life diminish, etc and present this in my next visit. I feel that this is such a very important visit because I need to find an answer and get relief to live my life.
Again, truly appreciate your advice. Hope you are having a nice holiday.
You are more than welcome. I've made the same mistake in not being assertive with the doctors and then losing function because of it. It's just we don't expect it to happen so fast. Plus, we all have our period of denial.
But you already know what you need to do. Here, I'll give you a little push. That's all you need. I think your instincts are right about RA.
When others get online, I'm sure that they will agree.
Having a wonderful weekend. Doing only things I love. What could be better than that?
I think if you go back to the origional rheumy, he'll probably eat humble pie and treat you a lot differently. If he doesn't , then you need to find a new one. It took me 8 years going to the same rheumatologist to get a positive RA diagnosis. Only when the rheumatoid factor turned up positive did she sing a different tune. Since then she's diagnosed me with other auto immune diseases too: Sjogren's fibromyalgia, in addition to the origional OA diagnosis. These diseases are complex and can take a long time to figure out. I personnaly think you should stick to the same doctor for a while.Hello!
I'm in agreement with everyone else so far. I have had the pleasure of having RA for the last 13 years and have yet to have a positive RH factor. Hopefully you can convince them to wake up and stop keeping you from being miserable.
Good luck!!
Its been 4 years for me i have also had one come back pos RH the rest have been borderline also my GP has tried to help . My rheumy sent me to Charleston she told me if he said (the doctor there) RA she wouldn't believe it. Last visit she said she might send me to Cleveland . I don't really want to go just yet. What web site did you find your info on seronegative RA? webmd.com is another good site. I know how hard it is and what your are going threw. They can dx RA threw mri and maybe you will get your answer next visit. Deanna very good advice.Thank you all! I am going to make an appointment to see the RA and after carefully considering this and discussing with family/friends, it seems the majority of individuals pretty much agree with what was said in this board. I am bringing with me a word doc that I created which has a history of my symptoms, pain, stiffness and lifestyle changes. It provides a pretty good picture of how progressive and degenerative this has been on me.
I still have some followup questions for the group if anyone would care to answer. It would be truly appreciated.
#1 - Any suggestions towards what medications I should ask for? Since Methotrexate didn't seem to work and apparently I am allergic to plaquenil. Would it make sense to go right to something like Enbrel now?
#2 - Would any of you recommend that I start steriods for SHORT TERM ONLY until the DMARDS kick in? I have MRI that says bone erosions and I want to PREVENT permanent damage. So, in your experiences, would it be wise to ask for steriods while waiting for DMARDs to kick in?
#3 - Lastly, I have been going to a pain management clinic for about 7 months and have been taking a strong pain killer, Kadian 80 mg per day total. Since I am still not managing my pain well, they wanted to increase it but I am hesitant as I do not want to take these types of drugs if at all possible, and if so, at lowest possible dose. Therefore, is there a particular pain drug that works well with RA? Before going to the clinic I already tried Celebrex, Bextra, Ibuprofen, Lodine, Naproxen, Relafen, Ultracet and Voltaren. None seemed to work that well except for Bextra (sigh). So, I kept taking aspirin until I couldn't take it and now on this Kadian. Thoughts?
I think you should let the doctor prescribe the next meds rather than asking yourself. Everyone is different and a rheumatologist will know what to try next. I started out on a low dose of prednisone 2 years ago and am still on it in addition to plaquanil, methetrexate and enbrel. In general, the insurance companies have a hierachy of drugs they want you to try before they opt for the expensive ones like enbrel. They start prednisone, plaquanil, metetrexate first and move on up to the biologics. Keep detailed records of your reactions to your meds and take it with you to all MD appointments. Every visit I ask for a copy of the doctors notes. It really helps when you're seeing more than one doctor to have notes from all of them.I agree with LindaK about the medicines. It is complicated. What you want to do is to pressure the doctor to take another step towards finding a solution to make you feel and function better.
In regards to the pain specialist (my daughter sees one), it is best to coordinate between the doctors. Do what Linda suggested and always, always carry an up-to-date list of your medications with you. What you can do to get the best care is to sign something in both offices so that the doctors can talk to each other about your care. There can be a conflict in doctor's opinions in what is sufficient pain control. But, in the end, it is your decision, not theirs. However, they can prescribe combinations that work well together and you will have fewer problems.
My daughter's pain specialist wants complete control over all the pain medicines and I wish that we had not agreed to this because I don't feel like she is seeing the RA doctor enough. But she is old enough to make her own decisions. The quality of pain specialist and their techniques of treatment seem to vary quite a bit. So question anything that you are not comfortable with.
But if you are not getting sufficient pain relief, that is another reason to push your RA doctor to do something. One of the problems with the stronger pain relievers that sometimes they can mask developing problems. As much as I hate pain, I don't want to do that.
Well, I thought I would give you guys an update re my last visit.
I informed my primary physician of what the Cleveland Clinic RA suggested (start DMARDS and steriods for immusupprosive treatment) and that she would be sending him a letter confirming this. We both agreed that the Colchicine IV treatment was doing very little (unfortunately) so, we decided to stop this treatment. He then said he was going to try to get my previous RA in to see me ASAP, like that minute! Remember, they both work at the same facility.
I heard them talking outside and they started arguing. I could not make out all the words, but he shouted "he needs treatment now, not tomorrow"!!! Needless to say, I was now a little nervous as I did not know what to expect next. The RA came into the room and was looking at my swollen joints (MCP, wrist, thumb, etc) and asked how I was doing. I advised her that its continued to be downhill from when she last saw me plus its been about 2 solid years of progressive, degenerative symptoms (pain, swelling, stiffness, night sweats, extreme fatigue).
She started explaining to me that these things are difficult to diagnose and that all my previous blood tests were not "consistent" enough to have her diagnose me, especially the non positive RA factor. She said she agreed with Cleveland and that she wanted to begin treating me ASAP. I could tell by the look in her eyes that she truly felt bad for seeing me go thru this, especially since 6 mths ago she said there was nothing "rheumatollogically" wrong with me and now I have permanent damage from the swelling (bone erosions). Without coming out and directly saying it, she was apologizing to me and said if I agreed, she wanted to start treatment ASAP.
Sooooooo, that left us where she said she was going to squeeze me in her schedule no matter what. She said that it was one year since I had all the TB, HIV, Hepatitis tests, etc and that she needed to do them again before we started the DMARDS. She started me on 5mg prednisone, twice a day and asked for me to come back in one week, when the tests would be done.
I want to thank both Linda and Deanna, and the others, for your helpful advice on this visit. I suppose I was more nervous than I should have been, but I feel like I have been misdiagnosed or rather non diagnosed for YEARS and I needed help badly. I think now I will be moving in a more positive direction and hopefully, things will get better. If I can "embrace" my condition, I think it will allow me to be more positive in life because all I have done in the past is wade in my self pity.
In any event, thank you again for your help and I will keep posting if I have good questions or answers for someone.
Take care
I am so glad that they are approaching this more seriously. Nothing like getting one doctor mad at another. Yeah, I think that was an apology. But you should have never been treated like that in the first place. Just shows stubbornness abounds in all professions.
I really hope that they get you to feeling better. Thanks for updating us.
Wow, all of that and only 10mg per day of Prednisone? I dont want to be the bubble -buster...but that doesnt sound like much of a leap. When you go back you really need to push for one of the biologics. If you have failed MTX and cant take Plaquenil and your symptoms are so severe that you cant even work...you need the big guns now. Are you still taking one of the NSAIDS or Celebrex? You need more than just the Prednisone to fight the inflammation.