View Full Version : What is the "normal" med protocol for lupus?

02-08-2009, 05:45 PM
Hi all,

I have noticed that many of you have had a hard time finding the correct medication to keep your symptoms in check. I think that one of the big problems with the treatment of lupus is that there are so few medications, and such a wide spectrum and intensities of symptoms, especially if the disease is not caught early enough. No wonder lupus is such a hard disease to diagnose and treat.

Anyways, I feel like my doctor may (or may not have..I don't know) have taken an unconventional approach to the treatment of my lupus, as I have not noticed anyone else on the same course of medication as me.

My lupus was pretty much diagnosed within a 3 month period, so my symptoms were basically limited to my joints. luckily for me, I had an in with one of the best rheumatologists in my state, because she was once my mom's doctor when she was pregnant with me. Long story short, the actual time between my initial symptoms, and diagnosis/treatment was very short compared to that of many others, being passed on from doctor to doctor.

I was first started on plaquenil and that helped almost overnight. Suddenly, all of my joint pain was gone and didn't have any symptoms. Then, as it often happens with plaquenil , my symptoms started coming back again. Instead of my rheumy putting me on prednisone, she put me directly on methotrexate. So, as of today, I only take plaquenil and a very small dose of methotraxate. I am personally glad that she did not put me on the prednisone because of all the adverse side affects.

I understand that all people are different, but I kind of feel like rhematologists may rely too heavily on prednisone, because it has been the "standard" treatment for lupus for years. What do you all think?

02-08-2009, 06:01 PM
I think that medications treatments are like anything and mostly what your doctor prefers. Sometimes it depends on what other overlapping diseases you have.
I think that Plaquenil and Methotrexate are the two most common drugs and treatment of choice. Along with those my rheumy strongly suggests and actually requests either flaxseed oil or fish oil for the lubrication. She also suggests and requires Folic Acid (not the OTC kind but perscribed) I also had to do Vitamin D. Then she told me that she will watch my blood work and play with the doses as needed. I get routine blood tests every two months. She really doesn't feel that treatment should be prednisone (thank god because I hate that stuff) unless for really acute episodes. She also does not perscrib any narcotics at all. I have a script for them from my family doctor and use them only when necessary. I also think that of course treatment isn't about only the medicaitons, there is exercise (which I don't really do at this point, but should) stress reduction (which I really am focusing on at this point) diet ( which I am not 100% good at all the time).
I would say that if your doctor is relying on predisone so much that you discuss your feelings with him. You have rights as a patient and refuse to take it at any point. I have been on it for short times a couple of times now. But I know that a 7 day dose pack is all that I would do right now. That way it takes care of the acute inflammation and I am off it in 7 days. I will be anxious to see what everyone has to say on this topic. Thanks for starting the thread.

02-09-2009, 02:35 AM
It's a guessing game for the doctor's...and educated guessing game.

And as lmangusrn stated, the doctor's have their favorit drugs that have worked well for most of their patients.

I found with my doctor's they prefer to start patients out on the mildest drup (if possible) then work up to the heavier hitters if nescessary. Less is more.

I just wish when they start you out on medications that they would take a moment to explain that there is a possibility that the drug they are starting you on might not work. How long to give the drug to take effect, and come back if there are any problems.

But they don't do this. I felt like a bothersome twit. The first drug failed and I went back like a begger asking for help. Then the second drug failed and I was even more frustrated.

If she had just said look, this is a guessing game to try and find a medication that works well for you.

By the failier of the third drug, I was getting ummm p*ssy about it. I went back to the doctor and vented.

She appologized and told me then what was going on. So when she prescribed the fourth drug, I asked...so how long do I give this one. She gave me a time frame and that's the drug that helped the most and I'm still on it.

02-09-2009, 02:52 AM
Each of us will have different issues with our Lupus. Some people may have one symptom while another does not. I have noticed with mine that the doctor will put me on medicine when new symptoms arise and if it work I am kept on it. Sometimes they work for a bit and others stop working shortly. It is really easy to get frustrated when the doc can not find anything that works and it is frustrating when one medication works but eventually you become immune to it. The good news is that there are so many medications out there that our doctors can pull out of their hats to help us with all of it.......it is a huge lesson in patience. I think in the end we end up being some of the most patient people because of all of this.......good luck and keep us posted on how you are feeling :D I am on methotrexate so if you ever need to talk about it I am here :wink:

02-09-2009, 06:10 PM
hi friedababy,

I too am on Plaquenil. I am alergic to anti-inflammatories (NSAIDS) so my rheumy wants to use smalll doses of Methatrexate for inflammation. We will discuss at next appt in 2 months. I saw in an earlier post, that rheumies are now trying high doses for a short period of time, as opposed to small doses. Don't know about this, but you may want to ask your dr. I am going to.

I also take narcotics only when absolutely necessary. I have gotten a Medrol injection and it really gave me some relief for a couple of months. I know the side effects of chemo are no fun, but I really am trying to avoid high doses of steroids. My dr. wants to do the same.

share a smile today,

02-09-2009, 07:55 PM
The side effects of chemo are yucky but hopefully our bodies can adjust.....I am still waiting for mine to and it has been about a year or so.......still waiting...........still waiting........... :wink:

02-10-2009, 07:10 AM
can you expand on the side effects of chemo. This is the route my dr. wants to try, and I would like to know more info.

thanks, and good morning


02-10-2009, 12:18 PM
The side effects for the chemo drugs are similar to those for cancer patients. Mostly, nausea and vomitting, Acne; chills and fever; dizziness; flushing; general body discomfort; hair loss; headache; infertility; irregular periods; itching; loss of appetite; lowered resistance to infection; miscarriage; sensitivity to sunlight; sore throat; speech impairment; stomach pain; swelling of the breast; unusual tiredness; vaginal discharge; vomiting.

Seek medical attention right away if any of these SEVERE side effects occur when using Methotrexate or other chemo drugs:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black or bloody stools; blood in the urine; bone pain; calf pain/swelling; change in amount of urine; chest pain; confusion; dark urine; diarrhea; dry cough; enlarged glands; fatigue; fever or chills; inflammation of the pancreas (stomach tenderness, nausea, vomiting, fever, increased pulse rate); irregular heartbeat; mental changes; mouth sores; muscle weakness; persistent sore throat; red, swollen, or blistered skin; seizures; serious infection (herpes, hepatitis, blood infection); trouble breathing; unusual bleeding or bruising; unusual pain and discoloration of the skin; vision changes; vomit that looks like coffee grounds; yellowing of skin or eyes.

I hope this has been helpful
Peace and Blessings

02-10-2009, 07:39 PM
When I take my shot I usually have a very short period of time until I start to feel like I have the flu. It starts in my legs and about an hour after that I hurt all over. I will feel a little sleepy and I do not want to eat. I take my shot around 9 pm on Mondays and normally by Tuesday night I am starting to feel a bit better. Wednesday is a piece of cake and by then I am noticing the good effects from my shot. I have less pain and more energy, it is almost like when the sun come out after the storm.

I suffered from hair loss and horrible mouth sores before I went on Methotrexate; therefore, the medication helped the sores and hair loss. I do get pretty itchy but nothing a benadryl won't cure.

When I first started taking Methotrexate I took it orally and I became very sick. It made my stomach hurt pretty bad, so that is when I decided learning to give myself a shot was 100% worth it. With the shot it by passes your stomach and can help relieve some of the stomach discomfort. Also, when you are on Methotrexate your doctor will want you on prescription strength folic acid, this also helps with the yucky side effects.

This has been a good fit for me. It does not make everything go away but it helps. I had a bad reaction to plaquenil so that is not even an option for me. Just make sure you learn everything you can about the medication and make sure all your questions are answered. I know it is scary but do not let that fear stand in the way of trying something that may help. You will no if it is a good fit for you. I hope this helped a bit and you can always ask me anything :wink:

02-11-2009, 02:06 PM
Hey I just had a thought...could this be why they say that the doctor is "practicing medicine"?

Sorry...just some sick humor! I will go back to sleep now!

02-16-2009, 04:59 PM
How are you tolerating the Methotrexate, freidababy?

I appreciate this thread - like you my main symptom is joint inflamation and pain, my ANA tests came back positive and a dsDNA also positive (RF neg) but my primary wouldn't call it, instead refered me to a rhumatologist (three week wait)

I just want to be informed on the possibilities of what she might Rx.

You said planquinel looses it's effectivness after a time - is it the same with Meto? Do they have to keep upping the dose?

Also, Freidababy - your three month dx - very impressive - no symptoms years ago?

02-16-2009, 05:24 PM
I have noticed a major change in the communication between my drs. and myself. Each one of them notice that I have done research and am educating myself on how to live with lupus. My rheumy was visibly happy when I told her about WHL and her word choices changed, her relief was visible. She relaxed when she knew that I had joined the forum, and we have had conversations between us based on problem-solving, not her trying to explain the basics to me. I don't know if it would help with some of the other drs. but it certainly could not hurt and hopefully they won't be offended.

This is another reason that I am so very thankful to everyone from Conrad, Rob, and Saysussie, but also to each and everyone of you that have helped me grow and face what is ahead. I now have the confidence to tell the dr. if i am in a "fog" and don't feel like a wacko. Each time, the dr. patiently waits while I work through my written list, and to write their answers to my questions. I will always cherish the knowledge that I have gained from the members of this forum.

share a smile today,