Rheumy Questions - Please Help!! Need advice | Arthritis Information

I went to my regular doctor back in 2002 with very swollen/painful hands and wrists. A blood test came back with in RA factor of 52. I was assigned to a doctor in my plan and this guy is supposed to be the best in the area.

I've been seeing him for over 6 years now, and I feel like nothing has been solved. He won't even diagnose me with actual Rheumatoid Arthritis (will only call it a "connective tissue disorder"). I feel like I'm constantly brushed off because I'm not 80 years old or a serious enough case for him.

We've tried a few different things. He has me on Naproxen, Methotrexate, and Hydroxychloroquine. I feel like the MTX has helped significantly, but I'm STILL IN PAIN, and tell him this every time I go. He has basically said that he thinks I'm not swollen and that I can live with the "small" amount of pain I'm having. I always leave and get to the parking lot in tears.

It will occasionally get bad enough where I limp, can't hook my own bra, can't straighten an elbow, and it hurts to shake someone's hand. I've gotten fluid off of my knee and cortisone shots in my knees, hip, and wrist in the past from him, but only because I came in and complained of the pain.

Every time I see him he says the blood tests seem fine and "Everything looks good" so he sends me on my way. So what if the tests aren't showing anything "significant" enough for him or if he thinks I look fine. I'm NOT FEELING FINE.

I can't sleep because of the pain. I am in tears as I type this - for the pain and just sheer frustration. I have questioned him numerous times on why I can't try something like Enbrel or Humira and he brushes it off like I'm not serious enough of a case.

WHAT IS GOING ON? I checked my plan and there's only one other doctor in my plan in the area, and I've heard even worse things about him than the one I'm going to now. What can I do? Suggestions? I'm so lost. I thought it was wise to treat aggressively?

~ In pain and sleepless in Neenah, WI

superb33s2008-10-13 09:40:16I find naproxen helpful. Don't know about the others. Maybe someone who has experience with MTX can respond or you might read some of the other posts about this.Find a doctor out of your area and enjoy the cruise. Quit crying and take action. Crying does do some good but not much. It is found that tears actually help eliminate toxins.

LEV

QUIT CRYING? nice advice. Hi,

Sorry you are in so much pain and not getting much help. Where are you? Maybe someone here knows of a good Rheumy that you can travel to.

Hi Pam! I am in Neenah, Wisconsin. There are two doctors in my plan in Neenah/Appleton, and one in Oshkosh. TELL your RD that you want to try another dmard or have an increase in the MXT and you want to try Enbrel. Don't ask, tell him/her. Have you had any xrays of the joints that are the most painful? You need to find out what your last RF, sed rate, and CRP was. Know what the norms are and if they're elevated then you need to insist on a change in your medications or find an RD that will treat the disease. Some of us have been through half a dozen RDs before we got help. I've been through 4 and the last one was a keeper. He's aggressive and I'm now in clinical remission after 11 years. It can happen. Take care and keep us posted. LindyThank you for the great advice. I don't really know what's normal and what's not since I've only been to one doctor. I have had xrays of my hips, hands and wrists. Which he said showed no significant swelling. I had a nodule on my wrist that eventually went away.

I have asked if I can try Enbrel, and he says no and that he can't make a diagnosis that I have RA in the first place, just "connective tissue disorder". I've been to the websites on diagnosis and can definitely make one based on what the sites say (at least 3 of symptoms on their lists), but he still won't. He's old, and old school. I think I need to find someone younger and more aggressive.

Thank you again for the advice and I will ask for my next blood test results.

Supurb,

I didn't mean it in a mean way. I meant it as it was. Take action. If you were offended by my advise, I find you suspect. Have you never told your children to quit crying and fix it? Does crying do any good. Six years seems like a long time to be so casual about such a serious condition. None the less, good luck on your journey. Oh, and keep crying and take no action if it makes you feel better.

LEV

I was asking questions and getting direction so I could take action from there. This is supposed to be a support forum for people who need advice. You shouldn't tell people to "quit crying", regardless of how you mean it. I wasn't offended by your advice. I just think it was useless and crude. Now you find me "suspect"? Yep. I go on RA sites and post random stuff for fun. What a weird, weird comment.

I don't have kids. I am a single 31 year old female. I was not trying to be casual about anything - I have a United Health Plan and do not have many options. I've been as firm with my doctor as I can be and have not gotten far with him. This is the only doctor I've ever had and didn't/still don't know what is normal, so I have nothing or no one to compare him to.

superb33s,

First, welcome to the board. Sorry you have a need to be here.

I've always been happy that my RD treats me based on how I feel, not how I look or what my inflammatory markers are at the time.

I very seldom swell, but that doesn't mean I'm not in pain. Actually, some of the worst pain I've had is when there wasn't any visible swelling. If you are in pain, something is wrong. I would encourage you to tell your RD what you have trouble accomplishing. Tell your RD exactly what you said to us about dressing, shaking hands, etc. If your RD still won't take you seriously, I would seriously consider seeing another doctor. There's nothing worse than a doctor that doesn't listen. Besides, a second opinion never hurts.

I was on Plaquenil and Methotrexate and was still having pain. I dropped the methotrexate and added Enbrel in Decmeber of last year and it made a huge difference. I just recently had my first flare since starting Enbrel but it only lasted a few days.

I hope you feel better soon.
So,

You can't drive a hundred miles to another rheumy? I thought that I gave you good direction, do what ever it takes to get to good. I just don't sugar coat. I thought that you were a grown woman and that you could be given advice as if you were an adult. I find that not being well cared for for six long years and doing nothing about it to be very casual. I can't imagine going a week without excellant care, before I would take action, but that's just me. Six years with such a serious disease as rheumatoid arthritis, a disease that can cripple and even cause death, and having a casual "there are only two doctors in my area" and therefore you take no action but cry everytime you leave the doctors is very casual, very casual. Good luck to you. Maybe you should see a pediatrician.

LEV

super33- I am sorry for your pain. I am in a very similar situation. Today was the first day I posted also about my situation and there seems to be very little understanding for people that do not have the exact same situation or that are new to this disease on this forum. They appear to act like you are either"suspect" or you are just stupid to it all. Well what I have learned from this message board is that everybody's symptoms are differant. And I guess there are people on this forum that has had this disease for so long that they have forgotten to sympathize with people that are newly diagnosed or still unsure of why they are in so much pain. There are too many people on here that seem like they are all to sure of themselves. And with out knowing you judge. I hope they will never get in the situation where they find themselves in unidentifiable pain and come here for advice or a shoulder to lean on for a minute. Because I am afraid this board is no longer like the post I read from months back where their where people that actually cared about others. This does not apply to all posters here but those who say stop crying have a lot of nerve or they trully dont have it themselves or they would understand your pain.Sorry things are not good. Definitely expand your search area. When I get my infusions, there are people there who have driven over 3hrs. I love my rheumy and he is one of the top on the east coast. I have had 3 different rheumys. One I lost due to a move. When I got to my new place, I just found one in the phonebook. After a few months, I realized that we didn't click and spent time researching a new one. Your dr. is going to be with you for a loooong time so make sure you feel confident in them.

I there a large hopsital nearby with a Hospital? This is often a good place to start looking.

Hope you can find someone to give you relief.

Obviously you aren't here to help and would rather start little forum wars and push buttons. Seriously, get a life.

I'm so glad for your post Islandbaby. You are exactly right and I can't thank you enough! Would you like to email each other? I don't really like this environment here...glad you agree.

SuperB and Islandbaby, Please don't judge the forum by the posts from a certain individual. Those posts don't represent the accumulated knowledge that's part of the forum.

There really isn't any norm for how people react to RA or how RA affects us. We're all different. The latest literature and studies have shown that early stage RA be treated aggressively and that usually means starting with a dmard, and if no relief when at max dose add a biologic. All studies have shown that the biologic works best when using a dmard with it. Some doctors start off with a dmard and a biologic, it all depends on how aggressive the disease is. No one can give you absolute answers because that's not the nature of the disease. It's an individual thing. We can only ask questions and try and guide you in the right direction.

Sometimes we're blase about how much someone is suffering because we've been there and back many times. All one can do is help you understand the disease and give some guidance. I'm not a particularly huggy person but I do have some knowledge about the disease and try and share that knowledge.

Like I said before ignore the non helpful individuals and take to heart the advice coming from the individuals who have some knowledge. Like life itself there are many different personalities on the forum. Lindy

Superb33s-sorry. I don't know how my post was meant to push buttons. I was just trying to help. I was just trying to say to keep looking and not give up. Yes, please don't let one odd apple scare you away.

I am so sorry and I totally understand! I think sometimes RD's don't spend enough time looking at your chart and remembering the whole course of things or focusing on you as a patient. I am RF negative and was sort of being treated the same way (complaining about joints but because no huge swelling, just dismissed). But then erosions showed up and RD tune changed. And this is a guy I like. But apart from the erosions I was having limits and pain that he wasn't totally focused on either. So part of me is like, well, I had all these issues before and I guess erosions mean something but my pain was there regardless. Sounds like you are dealing with a lot more and I hope you can find some help!

superb33 check your messages

rockydd - I did not mean you. I'm sorry.rocckyd I dont think she meant you I think she meant LevLarry and apparently this is not the first time he is involved with problems on this board, according to previous postLinB-

Thank you for your input - it means a lot. I understand your point of view, and understand how others can be sort of "blase" about it if they've been there and back. But that other post was just heartless and unnecessary, and that's the last thing you need to read when you come here desperate for help.

I am on 4 MTX every Sunday. I was on 6 but he brought me down to 4 due to the heartburn it was giving me. As I said I'm also on Hydroxychloroquine and Naproxen as needed. It's not helping very much.

I just called and switched to a young new primary care physician that my Mom goes to. That is my step one. Maybe from there she can recommend a good new rheumy, even if it means traveling an hour or two to see him/her.

Emily

Emily, I'm glad that you're going to a new primary because then you can talk over the whole situation with them and hopefully you'll get a referral to an RD that will take you seriously.

There is a medication that you can take to protect your tummy from MXT. I changed from tablets to injectable MXT to bypass my stomach and it's worked out great. Also the response from injectable is a little more than taking tablets. You're only on 10 mg. of MXT and that's a very small dose. Most RDs start at 12.5 mg and work up. Hope everything works out and keep posting. Lindy

Hi LinB,

I asked if I could take injectable MTX instead but my rheumy said no, that it had something to do with insurance and that it wasn't necessary. Ugh!!!!!

Well, at least I am changing to a newer younger Primary. She can recommend a new rheumy from there.

Sounds great, Emily! Hope you like your new primary doc and find a great new rheumy that takes good care of you!

You really do need a change in RD! He's lazy and not current. There are many of us on injectable and our ins. covers it. He's too lazy to write a letter of necessity to your insurance company. Ok, I'm done ranting. You're on the right course now in seeking another doctor. Lindy

Hey Supurb! Love the name -

Yes, please excuse you-know-who. He's all riled now because somebody

I do think you've been given some good advice. Changing docs is paramount for your health. If you can't find one near, you have to either go out of area or switch to another primary who has more options of rheumies to pick from.

Also, seriously, get all your labs and copies of your chart PRIOR to moving down the road. When you get those look for 'hints' on what is going on - my first suggestion is to check mineral panels and thyroid function. If those are 'off' even a little, it can really up our pain levels.

Also, you might consider probiotics - not the cheap stuff - get some high powered guns at the local Vitamin Store. If you search here, you'll see a lot of traditional meds people report a serious drop in pain levels when they started using them.

Yes, it's wacky CAM stuff - but it works.

Hugs and welcome ~

Pip

Injectable methotrexate is just as cheap as oral methotrexate, even without insurance. Your insurance company would much rather have you on a cheap drug like methotrexate than one of the expensive biologicals, so I can see no reason why they would prevent a move to the injectable form.

If naproxen isn't working, ask for something else. Have you tried ibuprofen? Any other NSAIDs? There are plenty out there. Naproxen works wonders for me but celebrex does nothing; some folks are just the opposite. Keep trying different ones until you find something that works.

Have you tried fish oil/omega-3 oils? As it says in my signature, fish oil (10 capsules per day) has been my miracle drug. Of course, don't try taking such a high dose on your own - definitrely run it by a doctor first! It's not without side effects. It generally takes a few weeks to feel the effects. Again, your mileage may vary.

Definitely get a medrol dosepak if you're not taking any form of prednisone. As others have said, it is therapeutic (short-term) as well as diagnostic.

You need to find another doctor. You're pretty close (all things considered!) to UW-Madison and Milwaukee - there are world-class doctors in both of those towns. Your health and well-being are worth a couple of road-trips per year, right? If you're single with no kids, make an adventure out of it! Get some girlfriends and stay overnight when you have your appointment. Go out and have some fun!!!
You got good advice from people who have lived it for a long time. Don't let your feathers get ruffled and be stubborn about the advice you have been given. Put your big girl panties on and go take care of business. You can do it! Take control of your health! Find a doctor that you like and that takes care of you.

Best of luck,

Phats

People deal with things differently. Some cry, eat, don't eat etc. It is not my place to judge how someone deals with difficult things. I think there was good advice to pull yourself up by your boot straps and try to solve the problem, but it is sometimes hard to see the advice when it seems to be putting you down for your emotions. I think kindness can go a long way. I hope you get some pain relief soon, and if you need to cry...cry, but then get yourself together and take care of yourself. If you aren't advocating for yourself, no one else will. Dr.'s can be intimidating, but just stay tough and get what you need.

My thoughts and prayers are with you.

Laurie

I've found that you either need to confront your doctor or find one who will get with it. What you want is an action plan to keep you up and moving as well as possible. Every time you go to the doctor with a symptoms history in writing. Discuss it. Decide what medicine, exercise, diet you need to do. You need a diagnosis. Get it.

I'm sorry to hear you are hurting, but I think it is definitely time to find another doctor if he won't treat you effectively. [QUOTE=Laurie0926]People deal with things differently. Some cry, eat, don't eat etc. It is not my place to judge how someone deals with difficult things. I think there was good advice to pull yourself up by your boot straps and try to solve the problem, but it is sometimes hard to see the advice when it seems to be putting you down for your emotions. I think kindness can go a long way. I hope you get some pain relief soon, and if you need to cry...cry, but then get yourself together and take care of yourself. If you aren't advocating for yourself, no one else will. Dr.'s can be intimidating, but just stay tough and get what you need.

My thoughts and prayers are with you.

Laurie

[/QUOTE]

I don't think anyone was putting the OP down. I think it is experience talking. But, I see how these posts can be taken as we are picking on the OP. The most important thing is to be your own advocate. It is so important to take control of your health and don't stop until you get the answers you need.

Phats

Well, well well.. I find it hard to believe that you can't give your old RD whatfor after giving it back to Mr. lev

Get angry with him.. you should be angry w/ your RD!! He's just tagging you along and keeping you in pain and discomfort without any advantages!! he needs to get w/ the program. Get some articles or threads and take them into him.. enlighten him...

There are loads of people on here.. with varying disease activity and discomforts... We are here to help you... but you need to stick around and see all the information available here.

if you have a question about something.. put it in the search link and you'll probably find tons of threads about that subject!!

You won't find smarter people anywhere about this disease than you will here... not everyone sugar coats things.. but you will get the straight story.

Hang in... seems like you give as good as you may get [QUOTE=superb33s]LinB- Sorry to hear about your problems. I take MTX too. I also take zantak morning and evening for the heartburn. It really helps. If you aren't taking it you might suggest it to your RD. I wish you luck with those issues too. Finding a good RD is essential. Someone you trust and feel he has your best interest at heart.
mom2

I agree Phats, but you know it is hard to tell when you read something. There is no tone of voice to go by. It can be taken a different way than it possibly was meant. I have gotten a lot of great information from this board and it is a good place to post.

Laurie

Hi Superb and welcome. I'm sorry that you've had such a hard time. I hope your new Dr. is able to help you out. I was very lucky to get a good RD on my first try. My blood work is also good but I have a lot of pain and swelling in my fingers and wrists. I have always had a negative factor. My x-rays didn't show much damage but the MRI's did. Because of this my RD has been aggresive in my treatment.

I hope you find a Dr. who will listen to you. It is so good to be validated. I am of the mind set that if you want to cry then you should go ahead and do it and not worry about anybody else. It's nobody's business but yours and I certainly wouldn't take advice about emotions from a man. There are many men, my husband included, who wouldn't understand the need to cry if it slapped them in the face.

Good luck!

The way I see it, imagine if it was your child. Imagine you had a child who had indescribable pain, fatigue, unable to keep up with kids on the playground, and for 6 years, the pediatricians said "oh well". You'd go to the ends of the earth. That's what you should do for yourself. Whatever it takes. Take care. I really feel for you - although most everyone will tell you that any auto-immune disease is difficult to diagnose. You have to understand that the actual diagnosis is not what's important, in my opinion being given advice or meds or whatever that can ease the pain and give you some quality of life is far more important than knowing what you have and putting a name to it.

I was diagnosed with PRA and am attempting to control the syptoms (ie pain) and if luck goes my way get me into remission within 3-5 yrs with diet & AP therapy. After I realised that there is no cure for this I started questioning how I got it for about a month then I realised it didn't matter how I got it, I just did. When I came to that point I then went searching for some way to control the pain and after a few months of research found that I could put more space between flares by going gluten & dairy free and watching my intake of foods that could aggrevate inflammation. Along the way I saw 3 rheumatologists and dismissed 3 rheumatologists. They wanted me to take medications that in my opinion would destroy my own immune system - that wasn't something I wanted to do. Add to that the fact that in short order I would be trying to control the side effects of the drugs rather than be trying to control the symptoms of the disease I had. Finally I found a doctor who listened to me, one who would include me in the fight to control the symptoms of the disease. You have to take some responsibility along the way by doing everything you can to ease the symptoms; ie watching your diet by attempting to eat gluten & dairy free if it is at all possible and drinking at least 2-3 ltres of fresh water every day to detox your system thereby giving any medications you are taking a better chance of working.

Be informed, take some control, be positive and have a goal to work to.

Good luck

Maz

I have seen the same RA doc since 1986 and I dread the day when he'll retire. Patients come from hours away to see him, cuz he's a dedicated, caring doc.

You need a doc that will work with you, not against you, managing RA is a team effort. When my insurance plan stopped convering my RA doc, I switched plans during open enrollment to continue to see him. Perhaps in the future this could be an option for you, giving you access to other RA docs. Sometimes insurance plans can be restrictive and a hindrance to getting the care that is best for you.

Re: methotrexate, my insurance doesn't cover injectable (but it does pills, go figure) but w/out a prescription it only costs me for a month supply and needle/syringes are very cheap. Bypassing the stomach saves me from a lot of GI problems that I had had after years of taking naprosyn. Be sure to talk to your new primary about precautions/or meds to protect your stomach.

For me, it took methotrexate and enbrel to reduce the pain and inflammation of RA, I hope perhaps with a new RA doc or with the help of your primary you too will find a treatment path that will bring you some relief.

There is another website, that the Arthrtis Foundation sponsors, that has a forum with a very nice and supportive group of RAers, you may want to also check them out. Good luck, hang in there, there is hope. Take care.

So sorry you are having this problem. I have been on Remicade since March with no results. I am going to demand that my RD put me on something that will give me my life back at my next appointment. Mostly he acts like I am nuts and he is always in a bad mood. He is RD #3, but he is close to home. We deserve better than this.

Try calling United and tell them you are looking for a new RD near you that is on their plan and see if they can help you.

Hugs

bumpbumpedy bump bump bumpI am the real inflamed0nline............ I like to stir up the pot........................

This place rocks!!!!!!!!!!!!!!!!

alright................now i can have all 3 of me posting IO, I0 & AAfind a rhumitoid dr. You may have to travel a bit, but it will be worth it. I don't think a family dr. can give you the correct care.
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