Any lupus patients here? Dr's?

[Anonymous]

I know, not web-md, but I have to ask. It's been 8 1/2 yrs since I've been diagnosed with SLE and I have refused the prednisone, but there has to be something new out that isn't so nasty with side effects.

I finally got a new Dr and she is a resident and scaring me half to death. She has to go ask 3 other Dr's what to do when she finds something wrong and has no clue on what to do with the lupus. She told me to find a rheumatologist, which I need her to send the referral to him, and he is booked until APRIL. My right side is so bad, I can hardly stand it. I have pain meds, but it's not even taking the edge off. I feel like someone took a hammer and broke bones.

This flare has been going for about 2 months. So, if there is anything anyone knows may calm this down that is not a steroid, please let me know and I will give her some suggestions so she can go ask the other 3 Dr's.

Oh and there is only ONE rheumatologist in my area.

Hey Pizza, I need the name of the hospital you went to. They aren't so nice here, when you WANT something to knock you out.

[Lel]

There's a variety of different treatments for SLE, but the choice of treatment is going to depend on your symptoms.  There are situations when steroids are necessary.  Keep in mind that some people take steroids for only a short period of time, until they get over their flare.  Yes, side effects are common, but it's still a good medicine for autoimmune inflammatory diseases.

Other immunosuppressive medications might be no better than prednisone.  These include methotrexate and Cytoxan.  These are pretty potent medications.  Imuran (azathioprine) and CellCept (mycophenolate mofetil) are also steroid-sparing options for SLE that have milder side effects, but are perhaps better for long-term maintenance rather than treatment of an active flare.  Plaquenil is also an option, but might be not be as effective in treating severe pain.

Consider starting prednisone to get you through the current phase; make sure you also take something to protect your stomach and monitor your sugar levels.  See if you can get it prescribed as a burst-and-taper regimen, and ask to be transitioned over to Imuran or CellCept as your symptoms subside.

SLE can cause serious health problems, like stroke, heart disease (pericarditis), and kidney disease.  Stay on top of your condition and seek medical attention if you develop any new concerning symptoms.

[MattH]

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@Anonymous wrote:

I know, not web-md, but I have to ask. It's been 8 1/2 yrs since I've been diagnosed with SLE and I have refused the prednisone, but there has to be something new out that isn't so nasty with side effects.

I finally got a new Dr and she is a resident and scaring me half to death. She has to go ask 3 other Dr's what to do when she finds something wrong and has no clue on what to do with the lupus. She told me to find a rheumatologist, which I need her to send the referral to him, and he is booked until APRIL. My right side is so bad, I can hardly stand it. I have pain meds, but it's not even taking the edge off. I feel like someone took a hammer and broke bones.

This flare has been going for about 2 months. So, if there is anything anyone knows may calm this down that is not a steroid, please let me know and I will give her some suggestions so she can go ask the other 3 Dr's.

Oh and there is only ONE rheumatologist in my area.

Hey Pizza, I need the name of the hospital you went to. They aren't so nice here, when you WANT something to knock you out.

---

For SLE it is worth travelling some distance to find a suitable specialist if you cannot find one in your area, the right care is extremely important.  Good luck.

[Anonymous]

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@Lel wrote:

There's a variety of different treatments for SLE, but the choice of treatment is going to depend on your symptoms.  There are situations when steroids are necessary.  Keep in mind that some people take steroids for only a short period of time, until they get over their flare.  Yes, side effects are common, but it's still a good medicine for autoimmune inflammatory diseases.

Other immunosuppressive medications might be no better than prednisone.  These include methotrexate and Cytoxan.  These are pretty potent medications.  Imuran (azathioprine) and CellCept (mycophenolate mofetil) are also steroid-sparing options for SLE that have milder side effects, but are perhaps better for long-term maintenance rather than treatment of an active flare.  Plaquenil is also an option, but might be not be as effective in treating severe pain.

Consider starting prednisone to get you through the current phase; make sure you also take something to protect your stomach and monitor your sugar levels.  See if you can get it prescribed as a burst-and-taper regimen, and ask to be transitioned over to Imuran or CellCept as your symptoms subside.

SLE can cause serious health problems, like stroke, heart disease (pericarditis), and kidney disease.  Stay on top of your condition and seek medical attention if you develop any new concerning symptoms.

---

The Cytoxan was the next in line they wanted to use and of course I said NO. I have considerable damage already done to all of my major organs. Right now the new Dr is trying to figure out what to do with my heart and pancreas as they are the most affected, at the moment. But with this disease, who knows what tomorrow brings.

I have pain management therapy, but with this flare, a slight more was needed, so out of those until tomorrow. Usually I have several left over as I do not like to take them due to the damage they do to the liver, which is also a mess from last check.

I'll mention some of these with my current Dr and see if she can consult and see what can be done in the meantime. I'm not the easiset patient to work with, but if you have been giving some of the drugs I have and had the reactions to them I did, then you may understand. Now I ask exactly what it is going to do. If it is worse, then normally refuse to take it. I'll chose the pain over the side effects. Or rather, use pain mangement to deal with it altogether. It seemed like a good idea at the time.

The ER Dr did mention that stress was probably the main reason for the flare, which I am sure he is correct. Alot going on lately. If I am not stressing, it isn't like this. Not being able to care for myself and family is a pain. Chores that need done that are driving me mad as I feel helpless to get them done.

Thanks for the suggestions and I will research and ask the Dr what she thinks.

 And Sorry for venting!!

[Anonymous]

I've tried looking out of my immediate area and still not having much luck. Houston is a bit far for me to try to travel at the moment. Thanks MattH.

[Lel]

It sounds to me that you are going to need some sort of immunosuppressive therapy, not just pain management.  Treating the pain without addressing the underlying disease process is like treating the fever of pnemonia but not the infection.

Like I said, a short course of steroids or Cytoxan might be needed to get over the flare, after which mild immunosuppression would suffice.  I agree with MattH, you need to get yourself to a rheumatologist, sooner rather than later if you really are having organ damage.  Whereabouts in TX are you?

Rituxan is another medication that has been used for lupus.

I hope something works out for you. 

[Anonymous]

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@Lel wrote:

It sounds to me that you are going to need some sort of immunosuppressive therapy, not just pain management.  Treating the pain without addressing the underlying disease process is like treating the fever of pnemonia but not the infection.

Like I said, a short course of steroids or Cytoxan might be needed to get over the flare, after which mild immunosuppression would suffice.  I agree with MattH, you need to get yourself to a rheumatologist, sooner rather than later if you really are having organ damage.  Whereabouts in TX are you?

Rituxan is another medication that has been used for lupus.

I hope something works out for you. 

---

I am in Louisiana actually, Lake Charles, which is on the LA/TX border. 

The Cytoxan is the chemo therapy medication, correct? I would get flares bad, end up in the ER and that particular Dr was ALWAYS there and pushed it down my throat almost. He demanded I start on it.  No more chemo, if that is what that is. (Had cancer, beat it, don't care to go through chemo ever again) I know I sound like a whiner, but geesh. Some of the meds are worse than the diseases themselves.

Yes, the heart is giving me grief. Resting heart rate has been steady running 145. Last time it starting climbing, 3 heart attacks followed. Dr's been able to get the BP down, some, but not much. I'm watching salt, diet as much as possible due to that and the chronic pancreatitis, which she said is caused from my extremely elevated trigylcerides, but my cholesterol is normal? I'm so lost.

I've been calling and going online to try to find Dr's closer, so far, still no luck. My new one is still ignoring me.

Thanks for the info again, Lel, I am looking and will try to become a better patient when/if I do find a Dr who can help. Some way, some how, I'll get one.

[Anonymous]

Here is a good website for finding a doctor in the field you want.  It will tell you their education, schools, etc.  I have  diabetes, asthma and many other things so I looked up my doctor.

Check it out --www.vitals.com/doctor/ailment.  Good luck

You can also search by area.

Let me know what you think.

[Anonymous]

Thanks for the site annie. I did look, and there are alot of Dr's listed. (Just alot not taking new medicare patients!)

I had my PM Dr try to help, so he ordered a T.E.N.S unit and a brace that should help with the pressure on those disc in the lower back so I can stand for longer periods of time (or sit even)

The rheumatologist I am waiting to see, sent out a ton of paperwork to fill out before my appointment in April. So, things are moving along. Thanks for all of the help and suggestions. I am going to keep gritting my teeth and hoping April gets here soon.

[MattH]

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@Anonymous wrote:

Thanks for the site annie. I did look, and there are alot of Dr's listed. (Just alot not taking new medicare patients!)

I had my PM Dr try to help, so he ordered a T.E.N.S unit and a brace that should help with the pressure on those disc in the lower back so I can stand for longer periods of time (or sit even)

The rheumatologist I am waiting to see, sent out a ton of paperwork to fill out before my appointment in April. So, things are moving along. Thanks for all of the help and suggestions. I am going to keep gritting my teeth and hoping April gets here soon.

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April is too long to wait for proper treatment if organ damage is already in progress (which it could be), I would suggest you become a squeaky wheel and try really really hard to see the best docs you can the soonest you can.  Good luck.