Diagnosed Aug 09

By pldlpn Saturday, October 24, 2009

- A
- A
- A

I thought everyone who was over the age of 50 was in the kind of pain I was. Then I was diagnosed with RA. I have to admit I was relieved...but at the same time upset. I am a nurse. I understand what having RA means. I was hoping it was something I could easily fix. Methotrexate has helped considerably...but I still have pain and side effects. Mouth sores, lip chapping is a problem. Wt gain is a problem. Sex is out of the question. I am willing to share my experience.

Comments (3) | Add comment

sandramarie

10/26/09 10:13am

I was diagnosed with Sjogrens in March 09 which has all the symptoms of RA but also has the dry mouth, lip chapping, sores in mouth, dry eyes and more. My doctor won't prescribe the biologics for RA, only imuran which is not working for me yet so I am still in alot of pain. I am sure that your doctor has ruled out Sjogrens for you but it is something that you might want to keep in the back of your mind for down the road since it can go hand-in-hand with RA as a secondary disease.

I know how you feel about being relieved and upset at the same time, it changes who you are. With a diagnosis at least they can start to help you, without it, you are in limbo. Please feel free to write back, I have more info for you. Sandi

Ellen Galo

10/27/09 1:17pm

Hi - I was 53 when my RA was diagnosed, about the same as my cousin. Her mom had it, and also our grandmother, so it is definitely a family issue. Her 2 sisters have diabetes (fairly recent) and another cousin of ours has diabetes (with no known risk factors and no family history) Two of my sisters have polymyalgia rheumatica (PMR) which is supposed to be temporary, but we'll see.

If I go the way of my family history, I'll get worse in my 60s (I can't wait...), however, the biologics were not available then. I never had any allergies when I was younger but started to develop seasonal allergies in my 40s, never anything extreme, however. Then sinus infections. Then pneumonia. Then fatigue and muscle pain. The the wrist blew up. Classic, I guess. I'm on Enbrel, and Prilosec, but had to stop Celebrex because after years, it finally bothered my stomach too much. Tylenol helped for a couple of months, then my liver enzymes went up, even though I wasn't taking high-dose. I'm now using Yucca AR (that's a combination of herbals, but there is also plain yucca available [here's a study that mentions the anti-inflammatory effect - also antiplatelet which might not be good for everyone...), which was used traditionally by Native Americans for arthritis and rheumatism) and it really is helping. I haven't had a repeat liver test, we'll see what happens next week, I know herbals can do a number too - but I have to take something! I also just added turmeric, there is so much being written about it, and when I take it shortly before bedtime I sleep MUCH better! you can just use the spice from the store in food, or you can buy capsules. Someone else on this site recommended it and I had been thinking about it anyway. Here is a study on turmeric

which also mentions green tea's component EGCG, another anti-inflammatory compound. Turmeric acts like a Cox-2 inhibitor (like Celebrex and some other drugs). It seems to have no negative effect on my stomac. (Yucca bothered it slightly the first week, but it's fine now. I do NOT take the full recommended amount, one capsule twice a day seems to be enough. I'm not totally pain free but able to function.

I also do Tai CHi, when I'm not too lazy or tired, and it is calming and strengthening - my thighs have never been so strong, really. (Maybe it will help bone density - I'm due to have that checked this week also).

I hope some of these comments might give you some other ideas to try. Everyone is different and what works for me may not, but you may find your own solutions... it's an ongoing process, nothing is automatic, I'm afraid! But don't give up ...

Lene Andersen, Health Guide

11/ 2/09 10:51am

This may be one of those times where being a medical professional is not going to do you any favors - you know too much about the bad things that can happen. It's important to maintain faith and hope, because it's what gets you out of bed in the morning and keeps you fighting.

If you're still having a significant amount of pain and fatigue, you should talk to your rheumatologist about increasing the dose of methotrexate, supplementing with another of the DMARDs like Paquenils, sulfasalazine or prednisone (prednisone can be an excellent booster, taking good results into great results) or maybe trying another medication altogether. many rheumatologists prefer to wait with the "bigger drugs" like the Biologics until it's proven that your disease can't be well-maintained with the DMARDs on the lower rungs of the treatment ladder, but you may want to talk to your rheumatologist about Enbrel, which has been a lifesaver for many people.

I'm going to give you links to different posts on the site that may give you more information. First, the post on managing side effects which may be helpful. Check out posts on diet and exercise with RA to help you with the weight gain and I can highly recommend a book called The First Year with Rheumatoid Arthritis - last year, I did a review of the book and an interview with its author. And lastly, when you don't feel well, sexual desire tends to go down the toilet, but sometimes, the physical intimacy can make you feel better (also, sex is a fantastic painkiller) - check out this post on love, sex and RA.

And I'm glad you found this site. So much of coping well with this disease is about finding a community of people who know exactly what you're going through. We have a terrific community of very supportive users and we're glad to have you.

Diagnosed Aug 09

Ask a Question