I just diagnosed with lupus and wanted to introduce myself and share my story. I started getting small dry patches of skin on my hands, toes, and elbows. This had been going on for a year but the problem was that the old ones weren't going away and I kept getting new ones. The dry patches eventually opened up and became painful rashes. In the winter time, my hands and toes got extremely cold and would turn blue/purple in color. Finally, I went to the dermatologist who did a biopsy. His impression was discoid lupus and Raynaud's. I made an appointment with a rheumatologist. After a lot of blood work (high ANA titer with presence of antibodies specific to systemic lupus), I got the diagnosis. Luckily, my only symptoms so far are slight fatigue and the rashes on my hands and toes. So I'm now taking Plaquenil and Procardia.
I do have some questions:
- We guessed that I have been in a flare for about a year, so how long can I expect this flare to last?
- Am I on the right treatment plan or should I ask about other medications? I have read a lot of people also take prednisone.
- What can I do to help healing of the rashes? The doctor prescribed the Procardia to help with blood flow, which he thinks will help the healing process, but I haven't seen a difference.
- Has anyone heard of biofeedback with respect to lupus and can share their experience?
And lastly, this is a great forum.. When I was waiting to see the specialist then again for results of the bloodwork, I came here and found great support and information. It is really helpful for someone that is who is new to lupus, so thank you!
01-27-2008, 10:49 PM
Welcome to our forum for those who share Lupus, Fibromyalgia, Sjogrens, and related auto-immune diseases. Did they run a sed-rate and C-Reactive Protein?
As far as flares, everyone is different and responds differently. If you are having joint pain, a suggestion would be to begin Kenalog shots (cortisone) for joint pain. You are able to have them every 3 months or 4x per year. Did you have a Plaquenil baseline completed by an opthamologist? If not, you should do so. Some insurances will cover it as it is secondary to Lupus, I would call your insurance and verify it. I have my eyes checked every 6 months, as in some people, it can effect their vision. Usually it is when patients have been on Plaquenil for 15 years plus.
I take Plaquenil and shots when needed for joint pain relief. When taking cortisone shots they work in about 3 days and are not absorbed by your organs as is prednisone pills. A friend who has Lupus was on Prednisone for years and it is absorbed by your organs, her organs are failing her from 15 years of prednisone.
I was told that if Plaquenil and cortisone shots did not calm down the Lupus, the next step for me would be Methotrexate (chemo) tablets. Thankfully, the combo (Plaquenil & Cortisone shots) has helped me. I am praying I don't get ill again; it throws the system and inflames it. Currently I am dealing with Fibromyalgia. I would talk with your rhuemy and see what he/she suggests. Maybe discuss cortisone shots is he/she open to them as a second measure to calm down joint pain and get Lupus under control. Most rhuemys will try the cortisone shots prior to moving on to Methotrexate. Also, gammaglobin shots are excellent to take every 4 months as they help boot your system in order to not get sick. Honestly, it has helped along with the flu shot.
Rashes, stay out of the sun and flourescent lights. Those of us who are sun sensative are also react to flourescent lights. Check out the Coolibar website as they have UV clothing on sale. In the meantime, nylon and polyester are sun resistant, the darker the better and a hat. Slather on SPF50 on. I had all my windows at home (high UV) and in my car tinted with UV tint; my doctor wrote a letter explaining why I need the tint in my car in case I should be pulled over. My front windows are tinted the lightest they can be. I call my house my batwoman cave and my car the batwomanmoible. lol.
How to heal the rashes-go to the drug store and purchase any cream with cortisone in it. Cortaid or Hydrocortisone is great. Apply 2-3 times daily and within 2-3 days the rashes will begin fading.
I have not heard of biofeedback in regards to Lupus. Maybe someone else on the forum can share their experience.
I would purchase the book by Daniel J. Wallace, Lupus for Patients and Families, on amazon, or it can be checked out through your local library system. 8)
Webmd's definition of Procardia:
Calcium channel blockers are drugs that relax blood vessels and increase the supply of blood and oxygen to the heart -- while also reducing the heart's workload.
For What Conditions Are Calcium Channel Blockers Prescribed?
High blood pressure (when other medications to lower blood pressure are ineffective)
Coronary artery disease
Angina (chest pain)
Abnormal heart rhythms
Diastolic heart failure (preserved left ventricular function)-generally, a calcium channel blocker should NOT be used if you have heart failure due to systolic dysfunction
Calcium channel blockers are also used to treat migraine headaches.
What Are the Side Effects?
Side effects can include:
Weight gain: call your doctor right away.
Breathing difficulties (shortness of breath, coughing, or wheezing): call your doctor right away.
Irregular or slow heartbeat: call your doctor right away.
Allergic reaction (skin rash or hair loss): call your doctor right away.
Tenderness or bleeding of the gums.
Swelling of feet, ankles and legs.
Talk to your doctor if any of these side effects (drowsiness, increased appetite, constipation, tenderness or bleeding of the gums, swelling of feet, ankles, and legs, or fainting) are persistent or severe.
Should I Be Concerned About Food and Drug Interactions?
Do not eat grapefruit or drink grapefruit juice while taking a calcium channel blocker.
Avoid alcohol, as it interferes with the effects of calcium channel blockers and increases the side effects.
I hope this has helped; we have all been where you are, and may be there again. I remember being scared and feeling all alone since no one else could identify with Lupus. I know this is a lot to absorb.
Keep us updated and I hope you are feeling better soon. Again, you are not alone as we are all here to support one another. You may be answering these same questions in a year or two mentoring to someone new to Lupus.
01-28-2008, 10:51 AM
Welcome to our forums! It is hard to say how long flares last, as Faith has said. For some of us they are blessedly brief, for others they seem unending. It is a strange and multifaceted condition.
Have you talked with a dermatologist? Especially if you can find one who has experience with autoimmune conditions like lupus. You may be able to find some topical medications that would work wonders for the rash.
Please wander the forums and learn and share with us, we lean on each other for support, laugh with each other, learn from each other.