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Old 01-31-2009, 01:14 PM   #1
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new diagnosis for RA

I was diagnosed last week with RA. The rhemotologist thinks its a mild form. I was started on prednisone 5mg about a week ago but discontinued it the other day because of extreme anxiety. The rheummy said it would not cause that kind of anxiety at that low dose but it began shortly after I took the steriod.
The steriod helped with my flare symptoms, so I am worried they will come right back. The doctor put me on Plaquenil. I am going to find a new rhemmy, I am not happy with this one. I feel like I have more questions than answers, she does not answer my questions she ignores them.
She ordered MRI's and xrays, she said the xrays showed soft tissue swelling of the hands and wrists and I did not understand what she said the MRI said. I want her to do at least xrays of the elbows and toes since they hurt so bad too.
She also said something odd, she was looking through the MRI films and says "theres so many of them" and then she was mad because they did the bones and not the joints, but she is the one that wrote the script for the MRI, why didn't she specify? Is there a different MRI for the hands and wrists, that would need specification between bones or joints?

Thanks, and if you have any information you could pass along to someone newly diagnosed it would sure be appreciated.

Lori
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L.


DDD, Spinal Stenosis, Fibromyalgia,
ALIF surgery on December 10, 2007, numerous Injections, SCS December 2010.

 
Old 01-31-2009, 04:04 PM   #2
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Re: new diagnosis for RA

Hi Hearts,

I know the diagnosis of the RA must be a difficult one which is associated with a flood of emotions, but "don't throw the baby out with the bathwater" as they say. Changing rheumatologists is not going to help anything except delay you from getting the treatment you need. Rheumatoid arthritis is different than other forms of inflammatory arthritis in that its symptoms can be treated with very low doses of anti-inflammatories like prednisone. You can't be on prednisone for a long time, however, so if you're not a of childbearing age, they can consider starting you on a drug like methotrexate or hydroxychloroquine (which they seem to have done in this case).

In terms of imaging: you had questions about the MRIs. Sometimes when the doctor orders it, it's misinterpreted by the techs who do the images, and the wrong emphasis is placed on the different views. It happens, and it's not anyone's fault really. I know it's confusing as it is to have a diagnosis like yours, and it mustn't help when it SEEMS like your rheumatologist is confused too, but I assure you it is not so. Rheumatoid arthritis is probably THE most common condition (next to SLE and osteoarthritis) that rheumatologists see. S/he is VERY familiar with what she is doing, and I really think you should give her a chance before bailing.

 
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Old 01-31-2009, 10:27 PM   #3
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Re: new diagnosis for RA

Not to hassle cgran but if it were me I'd bail.

Prednisone is notorious for causing all sorts of mood side effects, from mania to suicidal depression. And it can happen at a low dose/first dose, ask your pharmacist or read the Prednisone PI sheet for yourself. Soft tissue swelling doesn't show on x-rays. Perhaps you misunderstood her and she was talking about the MRI, which can show soft tissue. And there's no such thing as "mild" RA, you may be in the early stages of RA but RA is a progressive disease. Trust your gut.

Are you taking an NSAID? An anti-inflammatory, like Mobic or Celebrex?


After nearly 40 years of seeing rheumatologists on a regular basis, I still get nervous and forget everything I was going to ask! I'd suggest keeping a journal (treat yourself to a fancy one from the bookstore) write down your symptoms, side effects, questions, concerns, etc. Next appt, copy down all the questions/concerns you'd like discussed. You don't have to show it to the doc if you don't want to but keep it with you as a "cheat sheet" to jog your memory and, maybe more importantly, write down what your doctor says. I don't know how many times I've left a docs office and a mile down the road thought, "What he say?".

Last edited by AuntieLeela; 01-31-2009 at 10:31 PM.

 
Old 02-01-2009, 10:00 AM   #4
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Re: new diagnosis for RA

Hey auntie! Hearts, it's always good to get both sides of the story. I guess with Auntie's experience with RA, she's obviously able to offer insight I'm not able to.

Auntie, you're absolutely right that prednisone has a lot of side-effects both in the short and long term, but unfortunately, in the acute excerbations of RA, it's what works the quickest, and luckily can be done in very low doses for very short periods of time. I do agree that no one should be on the drug for extended periods of time unless absolutely necessary. With RA, there are so many more options for long term control (disease modifying anti-rheumatic agents DMARDs) that there is no excuse for someone being on long-term steroids.

I discourage people with little medical experience for reading about side-effects of prednisone while online. There are tons of them, yes, but different side-effects happen with different frequencies and it's hard to interpret which ones are important when reading a flyer. If you read the handout for aspirin or ANY common medication for that matter, you wouldn't take them either!

In terms of x-rays: just to slightly disagree, soft tissue absolutely shows up on x-rays, though it's harder to appreciate than the bony structures. You can make out gross swelling though. Obviously, though, soft tissue is MUCH better delineated with an MRI than with a plain x-ray.

Finally, I will also slightly disagree in that there is definitely such thing as mild RA. Not all people are afflicted in the same way with RA, and often if people are diagnosed and get on DMARDs early enough in the course, the symptoms can remain mild for life with little to no joint deformity. Unfortunately, there are people like Auntie mentions who, no matter what types of treatment they take, the RA is relentlessly progressive and results in the destruction of many joints in the body. There are people who have forms of RA who don't even know it and end up not being treated for years with only mild joint damage and then the disease eventually "burns itself out" once the person hits 60 or so.

 
Old 02-01-2009, 07:31 PM   #5
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Re: new diagnosis for RA

Quote:
Originally Posted by AuntieLeela View Post
Not to hassle cgran but if it were me I'd bail...
I'm with AuntieLeela on this one! I'd bail, too....I was on a very low dose of steroids for 10 days and I suffered the consequences for 2 years!! Physicians who dismiss, overlook, or deny side effects need to be fired as there is too much at stake.

Quote:
Prednisone is notorious for causing all sorts of mood side effects, from mania to suicidal depression. And it can happen at a low dose/first dose, ask your pharmacist or read the Prednisone PI sheet for yourself.
Prednisone suppresses the immune system so any unknown infections can rage necessitating antibiotic treatment. I could have lost my hand due to what my doctor and I could only assume was a hangnail...it wouldn't heal, and the wound kept getting larger and larger and larger. No one could explain it until they learned I had taken prednisone prior to the infection
Quote:
... Trust your gut.
Yes,!

Quote:
I'd suggest keeping a journal (treat yourself to a fancy one from the bookstore) write down your symptoms, side effects, questions, concerns, etc. Next appt, copy down all the questions/concerns you'd like discussed. You don't have to show it to the doc if you don't want to but keep it with you as a "cheat sheet" to jog your memory and, maybe more importantly, write down what your doctor says. I don't know how many times I've left a docs office and a mile down the road thought, "What he say?".
I think this would be very, very helpful...

Bethsheba

 
Old 02-01-2009, 07:52 PM   #6
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Re: new diagnosis for RA

I understand the arguments against prednisone, and I'm not trying to defend it, but I AM asking you all to take a step back and look at the big picture. All drugs which are used to treat the symptoms of rheumatoid arthritis or to try to alter its natural history are in some way suppressive of the immune system EXCEPT for the NSAID medications which have side-effects of their own. Prednisone, DEFINITELY impairs healing and can exacerbate underlying infections, but this is no different with other drugs that treat RA! Drugs like methotrexate (the first line treatment for RA), remicaide, enbrel, arava, sulfsalazine and other DMARDs for RA suppress the immune system even more than prednisone does. Prednisone is just so much more common than those other drugs that it tends to get the worst rap.

Every single medication used to treat RA unfortunately has SERIOUS SERIOUS side-effects which need to be taken in to account. These include serious infections to malignancies to serious autoimmune attacks on the central nervous system. The point is, though, that these side-effects are relatively rare (and extremely rare in the case of the serious ones) and are heavily outweighed by the benefits.

Rheumatologists make their livelihood from dealing with these conditions and prescribing these medications. If you want to leave your rheumatologist, do it because you feel he or she doesn't communicate well, but don't do it because you think "they don't know what they're doing" because I assure you that's not the case. Rheumatologists have to go through a LOT of training and have a LOT of experience to get where they are. Much more experience than the average family doctor. Rheumatologic conditions are very complicated and often difficult for laypeople to understand because they don't follow the general "schema" of other more common diseases. Because of the abstract and esoteric nature of many rheumatologic conditions, patients are often unhappy not actually because the rheumatologist is a bad doctor, but because the doctors have trouble communicating these complicated conditions and the miscommunication causes tension with the patient.

It's very easy to explain something like a common cold to a patient because it is a simple, self-limited illness whose diagnosis can often be made on the spot. This is NOT the case with rheumatologic conditions (including rheumatoid arthritis) where the diagnosis is often not clear after a single visit, and often can take a few years of visits before the diagnosis actually becomes completely clear. It's very difficult to explain something like polyarteritis nodosa or a seronegative spondyloarthropathy to someone who first of all doesn't understand the lingo, and secondly combined with the fact that these diagnoses need to be made over time which frustrates patients who expect a diagnosis (and a treatment plan) to be made on the spot. The other confounder with rheumatologic illnesses is that many conditions can mimic each other, and what's difficult about that is that treatment for some of these conditions will WORSEN other conditions they are mimicking and vice-versa! Because some of the treatments are so toxic, it is IMPERATIVE that the correct diagnosis is made, and again, that takes time.

WHOOOO! That was a long post whose message, again, is to not "throw out the baby with the bath water". Now, in fear of being reprimanded by the mods, I will only respond further if someone has a specific question!

Last edited by harka; 02-01-2009 at 08:03 PM.

 
Old 02-01-2009, 08:08 PM   #7
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Re: new diagnosis for RA

cgranulomatis,

Thank you for taking the time to go into more depth regarding the benefits and the risks.
Quote:
...Prednisone is just so much more common than those other drugs that it tends to get the worst rap.
That may be the case but because it is so common I would expect a rheumatologist or a family doctor for that matter to know that side effects can occur at ANY dose, and to inform the patient of the risks and the options before mutually agreeing on treatment!

Quote:
... The point is, though, that these side-effects are relatively rare (and extremely rare in the case of the serious ones) and are heavily outweighed by the benefits.
I question the accuracy of this statement and would suggest instead that side effects are unrecongnized/ignored and therefore underreported, and side effects can be life threatening (especially in a case of undiagnosed Lyme Disease which happens to be occurring in epidemic numbers in some parts of our country).

I agree tha rheumatologists go through a lot of training and have a lot of experience...but like doctors and health care professionals in other specialties, rheumatologists are products of a flawed system, they can't possibly know everything, and like everybody else, they make mistakes! Even the best ones do...

Bethsheba

Last edited by bethsheba; 02-01-2009 at 08:09 PM.

 
Old 02-01-2009, 08:33 PM   #8
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Re: new diagnosis for RA

Hearts,

You said the rheumatologist "ignores" your questions when you ask them. What do you mean by that? Do you feel like you are brushed off? Or does the doctor seem like s/he is not paying attention when you ask?

 
Old 02-04-2009, 02:20 PM   #9
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Re: new diagnosis for RA

Where are there Lyme disease epidemics in the States right now? I wasn't aware of this.

 
Old 02-04-2009, 03:04 PM   #10
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Re: new diagnosis for RA

Lyme disease is a hidden epidemic . The US Center for Communicable Diseases has identified lyme in all 50 states but has identified epidemic proportions ins some areas of Wisconsin, and in the Northeastern United States (along the coast in particular)....coastal areas seem to be hit hard and some think that birds spread the disease when they migrate (ticks and insects that carry lyme fall off the birds only to find another host on land).

Canada has a considerable problem but from what I've read, the Canadian Government more or less looks the other way (the US may not look the other way but there are problems here as well). I suspect the UK has an epidemic on their hands based on the posts on the various boards here. A geographical map showing reported cases of Lyme, range over most of that area.

[url]http://www.cdc.gov/ncidod/eid/vol6no4/smithG.htm[/url]

I'm sure you can find information out there...these are a couple of sites that I can post, but the most useful information comes from local/national/international organizations that deal with the disease. Government sites are often too general and lack accurate and updated information!!

Lyme is the great imitator...many people are misdiagnosed with anemia, multiple sclerosis, arthritis, ALS, and other conditions which is unfortunate, because if caught before permenant damage has been done, Lyme can be treated and cured with antibiotics.
Bethsheba

Last edited by bethsheba; 02-04-2009 at 03:06 PM.

 
Old 02-04-2009, 04:42 PM   #11
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Re: new diagnosis for RA

Quote:
Originally Posted by bethsheba View Post
Lyme disease is a hidden epidemic . The US Center for Communicable Diseases has identified lyme in all 50 states but has identified epidemic proportions ins some areas of Wisconsin, and in the Northeastern United States (along the coast in particular)....coastal areas seem to be hit hard and some think that birds spread the disease when they migrate (ticks and insects that carry lyme fall off the birds only to find another host on land).

Canada has a considerable problem but from what I've read, the Canadian Government more or less looks the other way (the US may not look the other way but there are problems here as well). I suspect the UK has an epidemic on their hands based on the posts on the various boards here. A geographical map showing reported cases of Lyme, range over most of that area.

[url]http://www.cdc.gov/ncidod/eid/vol6no4/smithG.htm[/url]

I'm sure you can find information out there...these are a couple of sites that I can post, but the most useful information comes from local/national/international organizations that deal with the disease. Government sites are often too general and lack accurate and updated information!!

Lyme is the great imitator...many people are misdiagnosed with anemia, multiple sclerosis, arthritis, ALS, and other conditions which is unfortunate, because if caught before permenant damage has been done, Lyme can be treated and cured with antibiotics.
Bethsheba
Do you believe in the entity known as "Chronic Lyme disease"? Could you direct me to the resource which claims Lyme dz has been seen in 50 states?

Last edited by harka; 02-04-2009 at 04:45 PM.

 
Old 02-04-2009, 06:24 PM   #12
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Re: new diagnosis for RA

Board rules limit the info I can share but the following is a US government site (which is allowable on these boards), from the US Center for Communicable Diseases. Again, the info is underreported and outdated...but I did no research to find it....there is some very good info out there, including Canadian Lyme sources.

[url]http://www.cdc.gov/mmwr/preview/mmwrhtml/ss4903a1.htm#fig1[/url]

Yes, I believe in Chronic Lyme. From what I understand, if lyme is treated soon enough it can be cured with little or no damage...but if it is unidentified over years (as in many, many cases) damage to the bones, cartilige, nerves, senses, etc may be permenant. That is why if doctors have looked and screened for everything they can, I encourage people to consider lyme...the long term consequences can be severe, if not fatal....and these outcomes can be prevented.

I recall several Canadians who have recently been diagnosed with Lyme...perhaps you can "find" them on the Lyme boards.

Hope this helps.

Bethsheba

Last edited by bethsheba; 02-04-2009 at 06:25 PM.

 
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