View Full Version : Back from the lost
10-25-2006, 07:48 PM
I just wanted to say hi and let everyone know that I was alive. I'm sorry that I haven't been posting a lot lately. I have been following the posts and topics, I just haven't had the energy to write. The last three weeks or so have been pretty bad, with lots of joint pain, especially in the wrists and fingers, and I have been having some pretty severe chest pains, along with some bad fatigue and issues with dry mouth causing bleeding lips and tooth pain.
So, today I went to the rheumy and he said that he was pretty disappointed because he really thought that after 4 months on the Plaquenil, Mobic and Trazodone, I would be doing so much better. He did a full work up and listened to my litany of complaints and said that I needed to increase my trazodone, keep on the plaquenil and mobic, and that he is adding 10 mg of methotrexate once a week and large doses of Folic Acid (partially to support the Methotrexate and partially because I am vitamin B anemic). He has upgraded my Lupus from "mild" to "moderate" and is particularly concerned about the pleuritis and the pain and swelling in my wrists and right shoulder. He also said that I definitely have Fibromyalgia and Sjogren's Syndrome in addition to to SLE and Raynaud's. he wants me to wear a jacket more often, a hat and sunscreen every single time I leave the house, even if I am not going to be outside because my photosensitivity is affected by most flourescent lighting and if I am going anywhere where there will be more than a few people, I need to protect myself from germs with a mask or something.
I am so overwhelmed. I am working 42 hours a week, and I still don't have my driver's license back. I feel like I am walking through a dense fog and I am never on top of anything at work or at home. My kids and husband are so great, but I know they are frustrated too, especially since I was feeling better for awhile, but then slid back downhill really quickly.
Does anybody have advice about how the Methotrexate may affect me and about how to manage the Sjogren's? He doesn't want to give me medication because I am on so many other things. The dry mouth with tooth pain, dry eyes, dry skin, and dry, cracked, bleeding lips have become a huge problem.
Thanks for listening to my overly long rant.
10-26-2006, 07:05 AM
No wonder you are overwhelmed! I'm glad your doctor is taking steps to treat you more aggressively and hope this improves your condition soon. Is there any possibility of taking a leave from work so you can rest and recuperate? As you know, stress is a big factor in lupus, and work stress can definitely aggravate your condition.
Although methotrexate is classified as a cancer treatment, in much lower dosages it is often prescribed for rheumatoid arthritis, and doctors also prescribe it for the arthritic symptoms of lupus. Two big warnings - you can't drink alcohol at all while taking this medication, and women should not get pregnant. Most people tolerate it well, but as with any drug, there can be side effects. If you will look back at the posts in the "medications" topic, there are several posts about methotrexate that may help - you can use the "search" feature at the top of the screen to find them.
I also have Reynauds and Sjogrens along with the lupus/scleroderma, so I know it's hard when you have a lot of overlapping symptoms to figure out what's causing what, and whether it's part of the disease or a side effect of treatment. With sjogrens, you can have severe dryness of the mouth and eyes, along with sleep disorders, especially a problem called nocturnal myoclonus, and a lot of other problems as well. Many people think sjogrens is just dry mouth and eyes, and don't realize it can cause systemic symptoms much like lupus.
It's very important to get good dental care because sjogrens can cause severe tooth decay and gum disease as well as the cracked bleeding lips you mentioned. I use a lip repair ointment called Aqua several times daily, and moisturizing hypo-allergenic lipstick, usually almay or prescriptives. Burt's Bees also makes a line of lip products that are excellent and readily available. You should also use a good toothpaste and non-alcohol based mouthwash - biotene is available in most drugstores - Rembrandt and Toms of Maine are also alcohol free. Yyour dentist may recommend prescription mouth rinses or flouride supplements so you need to discuss this with your dentist as soon as you can.
You can get more information about managing sjogrens from the Sjogrens Syndrome Foundation website -
You also need to be aware that many medications, including trazadone, can cause increased mouth dryness as a side effect. So if you notice the sjogrens seems to be getting worse, you might need to talk to your doctor about changing this med.
I hope things get better quickly!
10-26-2006, 07:56 AM
That's funny, because the doctor said one of the reasons he likes trazodone over some regular sleep aids is because it doesn't cause as much dry mouth. Also, I do have issue with depression and techinically, trazodone is an anti-depressant as well.
Thank you for the great advice. I was aware of the alcohol warning and the pregnancy warning with the methotrexate. Neither are a problem for me. I was more worried about hair loss and nausea or other gastrointestinal issues. I already have IBS-like issues as well as reflux disorder and was just wondering what to expect. I take ranitidine daily, I wonder if that will help.
I will definitely be looking into the mouthwashes and tooth pastes that you recommend. I have a lip balm that I love, made by Mary Kay, totally without petroleum, the problem is knowing where I set the tube last time I used it. I think that I have lost at about 100 of them! Stupid brain fog! :lol:
I will probably make an appointment with my dentist and my primary care provider for the next few weeks. Oh, one more question. My rhuemy pointed out that have developed what looks like a bone spur or something on the outside of my right foot, near the pinky. that is causing pain when I walk. He believes that I need to have it surgically removed. Can I do that while taking the methotrexate, or do I need to wait a while and take a break from the drug to have the surgery?
10-26-2006, 09:41 AM
Your doctor is right that trazadone causes less dry mouth than some of the other anti-depressants, but it's a common side effect with most of them, and the side effects can be dose-related - so something that doesn't bother you at a low dose can become a problem at a higher dose. Just something to watch out for - like everything else with lupus, it's a juggling act between the cure and the disease.
Whether you need to stop methotrexate before surgery will really depend on your doctor. There have been several studies of patients with RA undergoing joint replacement surgery that seem to indicate methotexate doesn't increase the risk of infection or surgical complications, So some doctors don't stop it before elective surgery - other doctors prefer to stop it 2 weeks before and 2 weeks after surgery. The website at www.arthritis.about.com has some good information about methotrexate that might help. The Arthritis Foundation website also has information about managing joint pain.
If you are having general anesthesia, you may need to stop trazadone because it may interact with certain anesthesia medications. Since foot surgery is usually done under a local anesthesia, this shouldn't be a prpblem, but you still need to discuss it with the anesthesiologist before any surgery.
You had mentioned a lot of wrist pain and swelling - it might help to ask for a referral to a physical therapist to see if wrist braces or supports might help. I have a lot of problems with my wrists, and wrist supports with a thumb splint for typing and keyboarding, and learning how to make changes in certain things like the way I carried plastic grocery bags over my wrist, and the way I typed, improved the pain and inflammation a lot.
If you like fresh pineapple, eat it a lot - it contains an enzyme called bromelain that acts as a natural anti-inflammatory, and also helps with digestion and reflux symptoms. Papain, the ingredient in fresh papaya, has the same effect. If you don't like fruit, the enzymes are available as supplements in many health food stores. Tart cherries and cherry juice also help with inflammation and tendonitis. Even cooked cherries like cherry pie filling can help reduce inflammation, so it's one dessert you can eat guilt-free!