Hi, my name's Randy. I'm a 37 year old carpenter/real estate investor with an as yet undiagnosed case of RA.
I have none of the blood markers for RA, and all of my x-rays, CT scans, and MRIs show no damage. Despite this, my hands/wrists, feet/ankles, knees, right hip and right shoulder are all inflamed and in pain constantly...with occasional very intensely painful flare-ups. I also get "winded" going up a flight or stairs (which is very painful for the knees as well), am exhausted all of the time, and find myself unable to keep up with other guys my age at work. Most of the doctors I've seen about this believe it is "some form of RA, but definitely an inflammatory condition."
After having tried all of the available NSAIDs (none worked) had a myriad of blood tests and imaging studies, my latest RA doc has me on 200 mg/day of Plaquinil and 5 mg/day of Prednisone (not my first course of this). I just started on both of these two days ago (am already feeling the Pred...shaky, sleeping poorly, heart racing, etc) and probably have a long wait for the Plaquinil to kick in. Can anyone out there tell me how long it ACTUALLY takes to feel some relief from this stuff?
Anyway, whether any of my doctors want to say it or not, I'm about 95% certain I have RA...I just don't know which kind...and after over two years of testing and doctor appointments, various medications, pain, stiffness, inflammation, etc. I only have two questions:
1) How does someone go about getting a doctor to commit to a diagnosis?
2) What are the REAL chances that any of these meds will work enough to keep me working?
I'm dreading the thought of having to quit working. After 15 years of carpentry, the thought of having to find something else to do to support my family is scary to say the least, and I'm not qualified for very much else. Sadly, no job involving french fries would support us...if it would, I'd have already started my McJob...and if I quit carpentry, I would need to immediately be making a similar income doing something else (very difficult to find, in the Detroit area these days).
Okay, I've rambled enough. If you stuck it out and read this far, thanks for your time.
Rjazz
Welcome to the board. You should get a lot of answers here as I have.
I would ask the doctor the first question and if he cant give you a diagnosis I would find another Rheumy.
Deanna here on the board will hopefully answer. She is really knowledgable.
I started on 20mg of pred and that really worked but I had sleep problems. Now I take 1 benedryl before going to bed and that helps me get a decent nights sleep.
Barb
Hi Randy. Welcome to the board.
The wait for a firm diagnosis more often than not is a long one, especially for those of us who are negative on the RA blood test.
The veterans on the board will be able to answer your questions more expertly, but I'll share what I know or notice so far.
The RDs seem to go by a standard set of criteria to make an offical diagnosis of RA. If you haven't already seen it, you can find it at a lot of websites, including this one at Johns Hopkins:
http://www.hopkins-arthritis.som.jhmi.edu/edu/acr/acr.html#c lass_rheum
The bottom line with this set of standards seems to be this:
If you are negative on the blood tests, don't have nodules (seems to be rare for people who are negative to get the nodules), and don't show damage on xray yet (xrays don't show damage as soon as MRIs, but MRIs for diagnosis don't seem very common),
then you have to be showing consistent visible inflammation in multiple symmetric joints including the hands, along with long-lasting morning stiffness, in order to get a diagnosis.
Do you have visible inflammation the doctor can see when you visit? Not everyone does. You talk about inflammation, though. If the doc can see it and you have symmetry, hands, and the stiffness, it seems like you should be getting a diagnosis.
I'm in the early stages and don't have the official diagnosis myself, but the doc has indicated that it is RA because nothing else fits, and he's treating it as RA, just waiting for time to provide enough of the other indicators to make the diagnosis official.
As far as I'm concerned, I don't care much about the official diagnosis as long as the doc and I both feel like we know what this is and are treating it fully. Finally getting enough damage or severity to put the nail in the diagnosis is not something I'm waiting for with a lot of excitement.
I've heard people say it can take maybe a year or two, sometimes more, to go through the various trials of drugs to hit on something that will work for you, and to take it long enough to notice a lot of improvement.
There seems to be a bell curve of luck with this. Some are fortunate enough to hit the right drug right off and get relief in a few months. Others, on the other side of the curve, may try everything and never achieve control or significant relief. Most of us can expect to be in the middle.
As for your carpentry job, that's a tough one. Sounds like a hard job to do with RA, and one that might contribute to joint damage if RA is what you have. Of course your doc will advise you. Problem is, as you've stated, there's no way to predict if you'll be under good control in a few months and working with few problems, or if you'll have a stubborn or faster-progressing case and need to find new work. I think you're smart to be starting to think about what alternatives you may have if you need to switch careers.
Please take a look at your state's vocational rehabilitation program. There are a lot of resources there that most people are unaware of. You may qualify for re-training, college, or other assistance with finding a new line of work. Even if you don't end up needing their help, you can be proactively preparing your resources in case you need them.
I wish we had better answers for you. If there's one thing we're all looking for here, besides the understanding and moral support that we DO get here, is some better answers.
Welcome to the boards Randy. I hate it when this disease is not exceptionally obvious. It makes it so hard to get treatment and relief. Mine, fortunately, was pretty straight forward...no one could miss it.Welcome Randy. I too have all neg labs and x-rays after 2 yrs but doc did dx RA. If you have insurance your doc must put a dx in order to get the insurance to pay. You might ask what they are dx for payment. Also you might get copies of your file and continue getting them when you have an appt. I started MTX 3 months ago with very little relief so am going to start Enbrel in January. My insurance demands that I try MTX for 3 months first.
A rheumy can dx RA without the benefit of pos tests based on your history and exam.
I hope the meds work for you and take care.
Randy, welcome and sorry to hear you are still at such a bad stage.
First, in all the tests, did they send you for an evaluation by a Pulmonologist and a Cardiologist? This is where is sounds like you are having the worst inflammation. Lung problems with RA can be insidious and if your Rheumy doesn't think to send you there, then they are overlooking a potentil problem area.
What clues me in to those two specialists is your problems breathing upon exertion. Also, being a carpenter, you are exposed to a lot of dust and chemicals that might be aggravating any underlying condition.
You are doing a very physical job and most people with RA cannot continue to do intense physical activities that they did before. Attempting to continue puts a drag on your body and will keep your immune system in a state of overdrive which makes it harder for you to recover and the meds to work.
You need to have a serious talk with your doctor about how much your work is contributing to your not getting better.
However, you do have a long way to go on the medicines that they could be offering you. Plaquenil is pretty mild and 5 mg of Prednisone is considered a maintenance dose and not enough to stop the inflammation. Also, they can add Mobic or Celebrex for inflammation. The next step up is MTX which has to be closely monitored but does make a big impact for most people. If that doesn't work, then they try the biologicals like Enbrel, Humira and Remicade.
If your heart is racing on just the 5 mg of Prednisone, then you do need to see a Cardiologist. It is possible that they are not seeing inflammation in your heart or lungs. I have to take stuff to slow down my heart and keep my blood pressure under control. It is amazing how much better one can feel if those things are treated.
Regarding you job, think how you might change your work so that you are using your brain and not so much of your brawn. You said that you are also a real estate investor. I'm assuming that you are interested in buying houses, fixing them up yourself and then selling them for a good profit. Maybe you can focus more on that end.
But first things first, you must get the illness under control and if you are doing heavy labor, it ain't going to happen. RKGal is right in recommending Vocation Rehab. They will pay for retraining you into something else that your illness can handle better. In the application process, they will require the doctors to send documentation and a diagnosis.
But I would point blank ask your doctor what it is, and where is your treatment plan going. After this much time, you really are not on that much medication if they suspect an inflammatory process is going on. A second opinion by another Rheumy may be very valuable at this point.
Do stick around. There's so many people here that have different experiences that it will help broaden your own knowledge. Ask lots of questions. Someone will have had a similar problem.
And, I hope you do get better. If you are more specific on what tests they have run, it would help to know what they still might try.
Hey Randy, I live in Royal Oak! Getting a dx can be very difficult as you are finding out. Your symptoms are almost exactly the same as mine, although my latest round of x-rays does show bone changes and about 30% loss of cartilage in my knees and ankles. My blood always turns out relatively ok.
The placquenil is a low level, first line defense drug and can take 3-6 months to work. I have been on it almost a year and can't actually say if its helping or not. I've run the gamete of the other drugs, Imuran, alsulfadine and such but they made me sick. I am still on prednisone despite the crappy side effects. I am also on humira injections and mtx (methotrexate) injections weekly. I can't say that I have achieved remission yet.
Working is very difficult. Especially since you have such a labor intensive job. I also work full time and my income is very much needed as well but fortunately I have a pretty easy office job.
I would say to keep on the docs. See a rheumy is you haven't, insist on better treatment even if they won't commit to a dx.
Randy - getting the DX can be long and difficult. DEMAND MRIs from your doc (RD or GP) to get moving on the DX. Get the MRI's of the places with the most pain - usually hands.
My GP finally gave me the script for the MRI's and that's what diagnosed me. Xrays and blood work will not show anything early on, but a MRI can show thickening of the synovial fluid, bone marrow edema, small cysts.
I went throught the same exact issue you are dealing with and the MRI's are the only thing that helped me to get a DX.
Good Luck!
Randy, welcome to the board! Ditto to what everyone said about the plaquenil and MRI. You should definitely check on the heart and lung inflammation. You don't want to let that go on if it is the problem. It is good that your doc is treating you, even though you don't have a firm diagnosis. Some docs wait around forever to start treatment. It took me 2 years to get a diagnosis. As far as work goes, some people find the right drugs for them and can go on doing many things they used to. Some aren't as lucky and have to change their lifestyles. Snce you are at the beginning, don't give up yet. Plaquinil might work well for you. Good luck and keep us posted.Hi Randy! I don't have much to add beyond what the others have said, but wanted to welcome you and wish you all the best. We're all in this together, Hon.
My RA diagnosis didn't take as long because my RF was positive... on the other hand, I've had scalp psoriasis my entire life, and only LAST WEEK (I'm 46) was it accurately diagnosed. Previous doctors (including a dermatologist) had only looked at it and called it seborrhea but never did a biopsy. Then my rheumy looked at it a few weeks ago and said it looked like psoriasis to him, and he scheduled me for a biopsy with another derm. Sure enough, it's psoriasis, and it seems this means I may also have psoriatic arthritis in addition to my confirmed RA (which dramatically limits my treatment options, naturally... yeeehaw!).
Guess my point is, everyone is different, and getting to a diagnosis can be quick and simple or can take a lot of time, testing, and ruling out.
Oh, and do indeed check into both vocation rehab programs and Disability pay, Dear. When I was first diagnosed with the first of my chronic conditions (Meniere's disease) several years ago, I fell exactly half a work credit short of qualifying for Disability pay (again, yeehaw!). I hope you'll check into it. It's what we all pay into the system for.
Best wishes!
Randy - Just another thought, so you will be aware of this option - RA and other AI diseases can be treated successfully with low-dose antibiotics, given over a long period of time. If you want more info, check out either of these websites: www.roadback.org or www.rhematicsupport.net Best regards!Thanks folks....lots of good info here to read...I appreciate it.
I had similar symptoms as you. I asked for RA tests many years back and they came back negative. Still the problems continued and nearly two years ago I went back and asked for another round of tests. The second time they came back positive. The point I'm trying to make is that it may take some time for the test to show up positive. One test, the Anti-CCP test, is a more recent type of test that can often "see" the RA before the Rheumatoid Factor test. The Anti-CCP test is less sensitive, but more specific (as I understand). RA runs in my family. My sister, who also has RA, and I participated in a national study to help understand the genetic component of RA. In recent talks with some of the research docs, they have noted that this Anti-CCP test MAY be better at "seeing" RA early on.
All the folks on this board are much more helpful than I am and they are much more knowledgeable. Ask many questions. Best wishes.
It does seem to run in some families, my father had gout, his brother had RA, and his sister had scleroderma, which is what I have. From my mom's side I got high blood pressure and OA. Such fun!Hi - I'm MrsRJazz. I posted this message as a separate topic but thought it might be better posted here. (Sorry, I'm new at this.)
Last week my husband was started on Ansaid, a new NSAID for him (he's been on MANY that did nothing for him over the past few years). He stopped that after about 5 days because he had SEVERE diarrhea almost immediately. This past Wednesday he was started on Plaquenil 200 mg's 2 x/day and 5 mg's of prednisone. He's taken predinisone many times before (the packs) and it has been the only thing that ever gave him any relief. Other than the typical weight gain and bloating, he's never had any side effects. The Plaquenil is all new to him and we have no idea of side effects. He was doing fine after stopping the Ansaid (the diarrhea stopped immediately) but tonight he collapsed with sudden, severe bowel cramping. He has a HIGH tolerance for pain and I knew this was BAD. He has been taken to the hospital. I'm scared to death for him. All these medications with all these awful side effects. I had called his RA doctor, but she said it was impossible for her to diagnose, but she didn't think it was the Plaquenil or the prednisone. He has absolutely no history of bowel problems (he even had a lower GI only a month ago in the process of getting in to see an RA doc). Has anyone had anything like this while on any of these meds? I'm just sitting here waiting to hear something and being scared (I have 2 children I needed to stay with) and my husband's father took him to ER. Anyone's experiences or advice would be greatly appreciated.
painfree, you are really beyond disgusting. If you want to be on this board and contribute to helping others, then keep your sales link in your signature. But stop pushing your product. It is completely unacceptable. It is really lowlife behavior especially when someone is really looking for serious help. I don't know how you look at yourself in the mirror.
MrsRJazz, there is a possibility that your husband is experiencing an inflammatory response in his bowels. This can happen with RA, though rarely, as it can really inflame any part of the body. There is a better chance that he has Inflammatory Bowel Disease or Chrohn's. Arriscolwell, who posts all the time, knows a lot about this because her boyfriend has Chrohn's. You need a good Gasteriterologist for this problem that understands the relationship with RA. What you want to do is push that do whatever tests that they can in the hospital. There has to be a reason he is reacting this way. If his body is just irritated by medications, then they can give him stuff that will help heal that up. But it is doubtful that it is plaquenil or the prednisone unless your husband just happens to be really sensitive.
It is not necessarily life threatening especially since they just did the lower GI. That does rule out a lot of scary things. That's good. Find out if they are going to do a CT scan or ultrasound.
I hope he feels better soon and this problem is resolved.
Can you get into a lighter form of carpentry - like a finisher rather than a framer? Could you be the foreman? Could you be a cabinet maker?
There are still a few jobs in Michigan, maybe vocational rehab can retrain you to be a nurse or a dental hygenist?
Maybe they could teach me to type or proof read.
On a lighter note maybe it is good that they can't take one look at you and say RA.
Heavy duty capentry is a young guys gig...so what do old carpenters do?
Welcome Randy,
Just thought I'd throw in a few words of encouragement. The first year of my RA was a lot like you're experiencing. My doctor didn't wait for lab tests to confirm a DX; she felt they are unrelieable any way particularly early in the disease. I started methotrexate...it takes a while to take effect, but it produced a dramatic improvement. I am much better today, 3 years later, than I was that first year...so don't give up hope! I am taking Humira now and am doing very well. I was reading an article last week that said that about 50% of people with RA find a treatment that leads to an almost complete remission...not perfect, but able to function pretty much normally. I was fortunate that my job doesn't involve manual labor so it was easier to get through that first year...good luck!
Alan