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Posted 2/13/2017 3:49 AM (GMT 0)
Hello,

I am female, 30, have had lupus with severe systemic involvement for 16 years. Newly diagnosed (sort of) with MS. I was in a coma for 22 days this past year, with kidney failure, then later in hospital for 7 days with rhabdomyolysis. I was down for 5 days before they found me in a coma so that's why so many complications I believe. Any way, I cannot tolerate heat, I get the rash on my face and chest, and my heart goes out of rhythm. I also get very nauseous and transient lactose intolerance, brain fog, narcolepsy. After my long hospital stays I developed CRPS and now have intractable neuro pain 24/7. Because my health was so poor I was taken off my lupus meds and stopped infusions as they were afraid my body was no longer willing to handle them (kidney and liver failure). Now I am prob going back on my methotrexate and prednisone of these flares continue and my labs are good enough. I take morphine sulphate 30 mg 4 times a day, methadone 95 mg, dilaudid 2 mg for break through pain and am full-time law school and work. It's HARD as f@#$ and a lonely battle--I mean, I am only just 30 and I look a lot younger which makes people think I've never gone through anything. I am very stoic with my emotions now which is very difficult because doctor's think I can suck it up and that i am not in horrible pain when I really am. I really wish there was a good medication for lupus and that was it, ive dealt with this darn illness long enough. Nice to meet you all. I also need help with my doctor who thinks TENS uNit doesn't help for pain related to lupus...grr. It helps more than the darn morphine! The doctor's I have seen happy to put me on this amount of pain meds and not treat the underlying problem. I also take Ambien for sleep although I haven't gotten my prescription refilled...anyone have advice on how to deal with the Heat? It triggers the worst flares for me! Heat/Sun is torture!!! People at school make fun of me bc I am so freakin pale. Anyway...please help if you can.

Best,
Jayla
Posted 2/13/2017 5:14 PM (GMT 0)
All you've been given for 16 years are pain meds?

What about Plaquenil, Prednisone, Cellcept, Imuran, MTX, Benylsta - there are many treatments available for SLE. Some of us achieve remission with these meds!

Anyway, you asked about heat - really the only thing to do is to avoid it! Our bodies have a physical allergy to the sun (and certain other light sources, esp. florescent), the rash is often inflammation. Air conditioning and avoiding overheating is imperative. Exercise can be taken in a cool room with cold water available.
Posted 2/13/2017 11:34 PM (GMT 0)
I have to wear special clothes with sun protection built in.
I personally look like a walking ghost because the sun makes me feel so bad. Plus I have vitiligo and have patches of even whiter skin too. LOL!

I've thought of going to a spray on tanning place, but I just really don't care what others think. Maybe we should start wearing all black and get some fangs? 😆
Posted 2/14/2017 2:13 AM (GMT 0)
It's nice to meet you too Babyfirefly. I'm so very sorry to hear of the awful things that you've been through. I developed pneumonia, was induced into a coma, placed on a ventilator for 3 weeks, and have
no memory from mid January 2011 to March 31. During my coma nerves were pinched in my left arm and I still have no sensation from my elbow to little finger. I never developed CRPS, but I have enough pain to understand a bit what your going through.

I've argued with my physicians a few times, but I have always been straightforward and I think it's very important that you do the same. Try your best not to be stoic. Also get specialists for each of your conditions. I have a Pain Managememt physician, a rheumatologist for my autoimmune disorders, and 6 other specialists.

I get two infusions each month and I want to stop my Benlysta for Lupus very badly. It's so hard on me and I'm not even going to school. I graduated with a BS in medical technology when I was 36 years old.

Finally about the heat. I sweat profusely! Buy soft reusable freezer packs (CVS) wrap one in a towel and place it under your head. Place a wrapped one under your pillow if you like. Keep a large fan in your bedroom. Take cool baths/ showers the last thing before you go to bed. For me any activity after bathes make me sweat. Anytime you are outside wear a large brim hat to help keep you cool. Any umbrella is also good to keep you cool. Your classmates may make fun of you, but they don't have Lupus and MS so %#*€ 'em.

That's all I can think of now Babyfirefly. Please let us know how you're doing and take care of those kidneys. Love, Butterflake
Posted 2/16/2017 1:20 PM (GMT 0)
I was given prednisone (Im starting a burst today, btw, plaquenil, methotrexate, two biologics, and then they determined by immune system was too weak and the risk of me dying was greater (stupid as heck bc those meds only made me feel better and the pain killers barely take off the pain at all.). The prices for benlysta and some infusions and injections that work went up and I can't afford them. My new doctor's make excuses not to give them to me saying I dont be able to handle them which is total bull they just don't want to do the paper work. Here's how the state of my health is without my biologics and infusions--7 hospital stays and 3 comas in 2 years. Coded 6 times. Dialysis for 5 weeks. Pain so bad 800 mcg fentanyl only stops it. (Yes, those lollypops). What I take now...people thing i must be pain free...HA! What do you think I should do? My doctor's (kaiser) almost already killed me twice and did some really horrific things to me. My neuro for small fiber neuropathy resigned from treating me after she found out my partner was a woman too (I am 100% serious). I don't have the time or energy to deal w their shot I put my whole heart into my work and day to day living. Now they are saying I have heavy metal poisoning and small fiber neuropathy some One please help Im at the very end of my rope [email protected]



Lynnwood said...
All you've been given for 16 years are pain meds?

What about Plaquenil, Prednisone, Cellcept, Imuran, MTX, Benylsta - there are many treatments available for SLE. Some of us achieve remission with these meds!

Anyway, you asked about heat - really the only thing to do is to avoid it! Our bodies have a physical allergy to the sun (and certain other light sources, esp. florescent), the rash is often inflammation. Air conditioning and avoiding overheating is imperative. Exercise can be taken in a cool room with cold water available.

Posted 2/16/2017 1:27 PM (GMT 0)
Btw,
In glad you mentioned fluorescent light sources and other light--I thought i waa the only one!

I think it's time for me to find another health plan. In in pain management, neuro, rheum, regular md, chronic pain therapist, at Kaiser and they don't do Jack. It's heart breaking. In in the bay area (uc Berkeley) do you have any suggestions?

Thanks <3


Lynnwood said...
All you've been given for 16 years are pain meds?

What about Plaquenil, Prednisone, Cellcept, Imuran, MTX, Benylsta - there are many treatments available for SLE. Some of us achieve remission with these meds!

Anyway, you asked about heat - really the only thing to do is to avoid it! Our bodies have a physical allergy to the sun (and certain other light sources, esp. florescent), the rash is often inflammation. Air conditioning and avoiding overheating is imperative. Exercise can be taken in a cool room with cold water available.

Posted 2/16/2017 10:19 PM (GMT 0)
I'm on disability so I don't know anything about other insurances.

If you're not happy with your doctors by all means find a new crew. Remember they work for you.
Posted 2/17/2017 10:35 AM (GMT 0)
Hi Babyfirefly. I'm not sure that I understand. Did you have the 7 hospital stays, codes, dialysis before you were on Benlysta or after? If it happened before Benlysta I'm very surprised that your docs would even consider Benlysta infusions. As you know Benlysta kills a type of B lymphocyte associated with Lupus, but to do this the medication is extremely strong. My infusion center will only give it when appropriate staff are available because of the high number of Lupus patients who have gone into anaphylaxis while being infused with Benlysta.

For me it apparently killed many lymphocytes leaving me with little to fight the many viruses that I contacted. After two years on Benlysta and spending the past few months in bed with viruses my rheumy is finally stopping my Benlysta. Biologics are harsh medicines even for relatively healthy patients. Babyfirefly you are not a healthy person. I'm so sorry that you felt great on Benlysta and now your docs will not let you take it. Honestly after working in hospitals 18 years, I don't think your docs won't give it to you because they don't want to fill out paperwork. They
think that taking it might hurt or kill you.

I know it's not what you want to hear Sweetie. If you do decide to change docs/insurance please be sure to obtain a copy of your medical records. I know it's not practical to get records from your hospital stays, but ask for the discharge notes which will have your diagnoses.

It's obvious that you are a fighter and a hard worker. I'm sure that's something your partner loves about you. Try to step back and assess everything that you've been through. Love, Butterflake
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