In process of diagnosis, have questions
First of all, I want to apologize for my questions in advance. I'm very new to this and some of my questions may seem very elementary.
I'm in the process of being diagnosed with RA. What I mean is, I've had serious joint pain, extreme stiffness, etc... went to my family doctor and told her my symptoms and after we talked, I realized that the symptoms I've had, I've experienced for quite a long time (probably about 8 years or so, but over time just kept getting worse). RA runs rampant in my family on mom's side.
Dr. ordered blood tests and called me saying that I needed to schedule time with her because my blood tests were pointing to RA.
Anyhow, as long as I can remember, I experience bouts of extreme fatigue at times. Like, I'll lie down after work and just can't get up because I'm so exhausted physically. Is exhaustion part of RA?
Also, almost every time I've ever had blood work done, I remember always having an elevated white blood cell count. Could RA have been a contributing factor to that seeing as how it's a disease where your body attacks itself?
Thank you so much for any answers/insight you all might be able to give me. I really appreciate it!
First of all, I'm sorry to hear that you probably have RA. I think your story is not an uncommon one. Many RA patients have the disease much longer than we realize. When RA finally cranks up (to the point that you can no longer ignore it), the uncontrolled inflammation in your body makes you really, really tired. RA is a systemic disease meaning that it affects your entire body including your blood and blood counts. Fatigue is very common with RA. You might also be anemic like many RA patients. Also, you are probably vitamin D deficient as well. RA symptoms can include swollen lymph glands, very dry eyes, dry mouth and digestive problems as well. (Smart tip: write down all of your symptoms before you go to your next doctor's visit to discuss.)
Here's the good news: many wonderful and very effective drugs are available for RA patients now. (I currently take Enbrel, an injectable biologic drug.) A good rheumatologist will immediately prescribe you a biologic to prevent the crippling and possibling disfiguring damage from RA. (The old-school rheumatologists still let RA patients go by the "failed therapies" model: a patient tries drugs that aren't effective, failing therapies and suffering for months. Finally, the patient is given the most effective medicine. Be wary of doctors who proceed with that route.) You will probably need another med to work with the biologic like methotrexate (which I don't like) or Arava (which I do). Your rheumatologist might also prescribe prednisone, an ANSAID (aspirin, Celebrex, Tylenol, etc.), DMARDs which work slowly, but surely, and possibly a painkiller. Many doctors treat RA patients with a combination therapy to suppress our over-active immune systems. Please know that you don't have to suffer and that there are many medications that can and will help you. It is important to start your treatments as quickly as possible. Some people are completely disabled in a short period of time.
P.S. No question or issue about RA that you want to discuss is elementary. You should ask your doctors anything that you want or need to know. Also, the Arthritis Foundation website is a great source of information.
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Allison
Thursday, September 24, 2009 at 12:32 PM
Actually, Tylenol, aspirin, naproxen and COX-2 inhibitors (and others) are NSAIDs. http://en.wikipedia.org/wiki/Non-steroidal_anti-inflammatory_drug
NSAIDs should and can help with inflammation and pain. Think of the way an aspirin can lower your body temperature, reduce the swelling of a sprained ankle or help with a headache.
I'm sorry if you misunderstood what I wrote. I was listing the types of medicines that this patient might be taking in the course of RA treatment. Notice all of the commas in the sentence that separate the medicines!
Ellen
Thursday, September 24, 2009 at 01:14 PM
Hi Allison,
I'm sorry if I confused the issue. The COX inhibitors are all NSAIDS (Ibuprofen=Motrin, Naproxen=Aleve, Celecoxib=Celebrex, Meloxicam=Mobic, Etodolac=Lodine, and of course aspirin). I merely meant to say that Tylenol is not an NSAID (it is a painkiller and fever-reducer but not anti-inflammatory). It doesn't generally affect the stomach lining as do the anti-inflammatories, though in overdoses it can hurt the kidneys.
I'm just particularly aware of the difference because, after taking even the lowest dose of Celebrex for years, I finally had to stop because of stomach pain. Tylenol is the one I use the most, and if pain is severe, I occasionally take Percocet, which is Tylenol+Codeine.
Sorry if I got the discussion off-track!
Allison
Thursday, September 24, 2009 at 01:31 PM
Ellen,
You're right. Acetaminophen is not an NSAID.
Hey, if I'd known that I was going to have this disease, I would've enrolled myself in pharmacy school.
01titansfan
Saturday, October 03, 2009 at 03:31 AM
Allison--
Just wanted to say that I'm truly impressed with your RA knowledge! As a rheumatology nurse who also has RA, I try not to butt in too much on this site, but sometimes people give advice about RA or drugs, etc...that I think is ridiculous! As I sit here laughing at some of the bad & wrong advice some people give, I sometimes have to say something because new RA survivors deserve to get factual information. Not the medical advice of some know it all's who are probably well meaning, but really know nothing about medicine. (It's always the same three people on this site) I don't think they realize how damaging their advice can be because they think they are right.
Anyway, I've noticed that when you try to help someone, you are always right on & give actual sites for people to get other info. You are the type of person who IS actually helping! Maybe if some others would read where you have backed up the info you are putting out there, they wouldn't need to wrongly try to correct you & give their wrong info. Keep up the good work & you can be my nurse any day of the week!
Allison
Monday, October 05, 2009 at 01:24 PM
Dear 01titansfan,
We need more rheumatology nurses and doctors to respond to questions and concerns on this website. I would think that most people today search the Internet for information about diseases and treatments. Please jump in and give your opinion and suggestions. I know that every reader will appreciate it. Newly diagnosed patients especially need good information sources and sometimes even the moldy-oldies like myself.
Thanks!
Allison
01titansfan
Tuesday, October 06, 2009 at 09:33 PM
Allison,
I agree people do need good advice & I do answer when I feel like people are getting absurd advice. Everytime I answer, I get someone correcting me with wrong info just as you did above. Also, I've gotten 6 people write a personal message to me wanting to know how to get narcotics. So,as you can see, I don't try to advertise my profession on this site! Only when I have too.
Allison
Wednesday, October 07, 2009 at 12:36 PM
01titansfan,
I think that's a perfect example of "No good deed goes unpunished!"
Allison
Forgot to mention about the white blood count. There are different kinds of white blood cells that have different functions. Some support inflammation (either for healing of wounds or fighting infection/bacteria - I'm not sure about viruses). I've noticed that when I went on Enbrel, my neutrophils went down, and when I back off Enbrel, the white count, particularly the neutrophils went back up. On the other hand, sometimes my leukocytes are a little low. So it's not an easy question to answer. You could have had some other kind of infection or condition that was unrelated, or it could be related.
I do recommend trying to always get a copy of your tests so you have the records, for your own information and understanding, and also in case you need to see another doctor for any reason, it will save time & money to either have them in hand, or be able to make a copy, not have them go back to the other doc, or repeat tests that may not be needed. It's all part of 'taking control of your arthritis' as the title of the Arthritis Foundation course encourages us to do. (I wasn't able to take the workshop, but did speak to the person running it. She's an RA patient herself and we had an interesting conversation about how our treatment needed to be individually worked out with our doctors. We both needed a modified version of what our doctors were trying to do. It can be done! I wish you well -
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That is a lot of very good information. I'm also on Enbrel, for over 4 years and doing well. I would just point out that Tylenol is a painkiller, but not an NSAID (non-steroidal anti-inflammatory drug). Celebrex, which I was on for a long time but can no longer take, is a painkiller and anti-inflammatory but not to the same degree as some other meds, like the biologics. It's a COX-2 inhibitor, which means it works something like aspirin and ibuprofen but does not tend to be so hard on the stomach. (Eventually my stomach wouldn't take it, after years and years...) I don't believe it is classified as a DMARD (disease-modifying anti-rheumatic drug). Prednisone is a steroid (not the body-building kind, however!) and is very helpful to some but does have some long-term side effects so it is used cautiously. And if you are taking it, you have to taper off slowly.
There is a page for the newly-diagnosed patient that might be helpful to you.