Medical help for my friend

[Scarlett]

My very ill friend that I have talked about is in a horrific state.  Today, hopefully in a few minutes,  I am calling her newest doctor.   I am beyond angry.  She is so so sick and in so much pain and it seems NOBODY will help her.  She gets passed from doctor to doctor, specialist to specialist and they won't even give her pain meds.  She is lying in the bed naked crying because the pain is so bad.  She has a new dermatologist who has prescribed a new med but of course insurance takes 30 days to approve anything.  As a sign that this doctor does know how bad it is she did something to escalate the approval and it is suppose to be on the way to my friend's house in the next few days.  But it isn't enough.  She needs to be hospitalized.  She is as bad as she was a year ago when she spent 10 or more days (I forget exactly) in the hospital in Dallas.  She at least needs pain relief.  Oklahoma has some very strict laws on opioids but for God's sake, addiction is the least of her worries right now.  If her regular doctor can't prescribe pain meds then she needs to be referred to a pain clinic.  

So there is my angry rant and I know I can't approach the doctor that way. I know they aren't going to tell me anything, so my words need to be heard in a way they help her and not dismiss me as a lunatic which frankly is how I feel right now.  Please, if there are any doctors or nurses or wives or husbands of doctors or nurses who can tell me the best way to approach this, please help me.

[Scarlett]

I want to add that her dermatologist told her a bad case of psoriasis is 10-15%.  My friend is 50% covered in the worst outbreak you can imagine.  Seriously Google the images of the worst psoriasis and she is worse than that.  She went to urgent care this week at some point and the doctor CRIED.  He asked if he could pray with her.  Something has got to give.

[Scarlett]

So I called.  I don't feel like I got far,  but who knows it might help.  I spoke to the front desk and she transferred me to the nurses line which of course went to voice mail.  I left a very long detailed message.  Then I hung up and called back and talked to the front desk and asked her to please have someone listen to that message now, not after hours.  That this is a desperate situation and that my friend is too sick to even properly advocate for herself.  She took down my friend's name and DOB and my name and phone number and said she would walk the info to the person who needs it.  

I am in near tears.  This is so bad.

[klmama]

Scarlett, you did the right thing. Would you be able to go with her to any appointments?  Having that extra person present and advocating for the patient often gets doctors to go the extra mile.

[J-rap]

I wonder if she'd get more immediate care if you brought her to the ER, not just urgent care?

[Scarlett]

1 minute ago, Seasider too said:

So what pulled her out of it last year? Can you help her bundle up for a car trip and bring her in to the nearest big city university hospital ED?

I’d be afraid if her current doctor wrote a script for painkillers, she may be tempted to overdose. 
 

How did it get so bad again? Did she not seek intervention when it started to go downhill again?

She has seen her doctors constantly.  Once a month she goes to Dallas to see the specialists there that helped her when she ended up there last year. (she was traveling and stopped at Dallas  because she was so sick).  She has a heart doctor locally that she keeps seeing.  The heart doctor is the one who told my friend 2 months ago that she would help her get into Mayo.  My friend ran frantically all over the nearby city collecting every record she could.  But the heart doctor stopped answering my friend's calls and that seemed to come to a standstill. As for the psoriasis,  the treatment that got her out of the worst of it a year ago stopped working, as has every single one they have tried.  And every time one stops working (usually after 3 monthly treatments) it comes back worse.  They keep giving her steroids.  That is all they offer her and frankly it doesn't help and makes her feel like crap.  So the Dallas doctor (my mind is blanking on what kind of doctor he is...oh wait, he is the psoriatic arthritis specialist) decided she needed to see a dermatologist.  Thus she has a new doctor here closer.  New dermatologist told my friend that steroids can make psoriasis worse.  ????  

[Scarlett]

8 minutes ago, J-rap said:

I wonder if she'd get more immediate care if you brought her to the ER, not just urgent care?

She has  been to the ER literally 10 times (I think 4 different locations) in the last 4 years.  Only one put her in the hospital. 

[Scarlett]

2 minutes ago, Seasider too said:

This is very sad. Is she married? Where is her husband in all this?

She is married.  Her husband is not a bad man but he is NOT an advocate for her.  He doesn't even go to doctor appointments with her.  And of course he is trying to work....that is another layer to this, they are now financially ruined...and the stress of that doesn't help her.  She has two adult sons.  She is very close to both of them but the younger works with her husband, which is what he needs to be doing to get the bills paid and food on the table....and the other is a SAHD of a 2 year old who lives across the street.  Her DIL works long hours.  I just don't think any of them know what to do.

You know those Lifetime movies where a person goes into a medical facility with a gun and threatens everyone's life because no one will freaking help them or their loved one?  I am beginning to understand that level of desperation.  Don't worry I don't own a gun.  

[kbutton]

1 hour ago, Scarlett said:

She went to urgent care this week at some point and the doctor CRIED.  He asked if he could pray with her.  Something has got to give.

I don't understand why this doctor didn't push for a referral or advocate for her. How frustrating!

I don't know much about psoriasis and steroids, but steroids can make people anxious/depressed. I would be concerned about that. 

12 minutes ago, Scarlett said:

She has a heart doctor locally that she keeps seeing.  The heart doctor is the one who told my friend 2 months ago that she would help her get into Mayo.  My friend ran frantically all over the nearby city collecting every record she could.  But the heart doctor stopped answering my friend's calls and that seemed to come to a standstill.

This is nuts. Is the doctor out with Covid or something? I think this is worth checking into on her behalf. Maybe she could sign a paper giving you permission to speak to them. 

[cintinative]

I'm so sorry. Is there any way you can call Mayo and see about getting her in? I don't know about their policies. Cleveland Clinic has something you can set up where you meet with various doctors to evaluate your case from multiple angles. Maybe she has not been properly diagnosed, and that is part of the problem.  It sounds like finances are really difficult, so that would be another question for Mayo--if they have any scholarship type things.  I certainly can sympathize with the horrible burden of medical bills.  I can only imagine how much a week at Mayo would cost. We couldn't sustain that either.

Sending up prayers for her.  Chronic pain is the worst, and thinking it is not going to end and/or may get worse is such a huge emotional burden. 

Thank you for advocating for her. 

[TravelingChris]

Oh no.  I hate the opioid laws that some states have made. It is not actual sick people like her and me that are any sort of the issue-  I do not get any high off of the medicines, as don't most true pain patients and the opioid crisis is mostly people stealing others' meds, and fentanyl/heroin/anit-anxiety meds alone or combo. 

 Pain clinics often don't need referrals.  If she has the resources, immediately signing up with a good concierge doctor would be the best.  My one is associated with MDVIP and that service helps get you into any of the specialty places- like Mayo and CLeveland.  Plus, you get doctors who go the route for you.  My one, for example, prescribes opioids to me, refers me to whoever I need to see, always can see me for urgent that day or next, has given me his cell phone #- which I have used only 2# in the last 5 years, and takes as much time w you as you need.  Also get a very thorough physical once a year.  Oh and my doctor visits patients in the hospital so we are not left to hospitalists who don't know your complicated medical history.

[TravelingChris]

2 minutes ago, cintinative said:

I'm so sorry. Is there any way you can call Mayo and see about getting her in? I don't know about their policies. Cleveland Clinic has something you can set up where you meet with various doctors to evaluate your case from multiple angles. Maybe she has not been properly diagnosed, and that is part of the problem.  It sounds like finances are really difficult, so that would be another question for Mayo--if they have any scholarship type things.  I certainly can sympathize with the horrible burden of medical bills.  I can only imagine how much a week at Mayo would cost. We couldn't sustain that either.

Sending up prayers for her.  Chronic pain is the worst, and thinking it is not going to end and/or may get worse is such a huge emotional burden. 

Thank you for advocating for her. 

Mayo has self =referral.  

[Scarlett]

2 minutes ago, TravelingChris said:

Mayo has self =referral.  

Yes but her insurance won't pay for that.  She has to get the referral and she has to have all of her records for the last 5 years to get the referral.

[Scarlett]

5 minutes ago, TravelingChris said:

Oh no.  I hate the opioid laws that some states have made. It is not actual sick people like her and me that are any sort of the issue-  I do not get any high off of the medicines, as don't most true pain patients and the opioid crisis is mostly people stealing others' meds, and fentanyl/heroin/anit-anxiety meds alone or combo. 

 Pain clinics often don't need referrals.  If she has the resources, immediately signing up with a good concierge doctor would be the best.  My one is associated with MDVIP and that service helps get you into any of the specialty places- like Mayo and CLeveland.  Plus, you get doctors who go the route for you.  My one, for example, prescribes opioids to me, refers me to whoever I need to see, always can see me for urgent that day or next, has given me his cell phone #- which I have used only 2# in the last 5 years, and takes as much time w you as you need.  Also get a very thorough physical once a year.  Oh and my doctor visits patients in the hospital so we are not left to hospitalists who don't know your complicated medical history.

I have never heard of this.  How do I find one?

[kbutton]

Just now, Scarlett said:

Yes but her insurance won't pay for that.  She has to get the referral and she has to have all of her records for the last 5 years to get the referral.

She might still be able to work it from the Mayo end of things. They might have someone she can see who will refer her, even if it's by telehealth or something. Most big hospitals and large practices know many ways to get the job done.

[Scarlett]

Just now, kbutton said:

She might still be able to work it from the Mayo end of things. They might have someone she can see who will refer her, even if it's by telehealth or something. Most big hospitals and large practices know many ways to get the job done.

I know she has spoken to Mayo directly.  I might explore this with her.  She is not answering me this morning.  And that is always tricky....how long do I wait before I start calling her sons or her husband asking if they know she is ok.

 

[Scarlett]

14 minutes ago, Seasider too said:

Her insurance company may have a social worker on staff as a patient advocate. That’s how I was able to get involved in my elder’s care cycle when she crashed hard - the social worker(s) gave me a quick education and a ton of resources and contact points to do what I needed to do. So she needs to call her insurance company and Mayo Clinic to see if they have a patient advocate/nurse navigator who can help get her to the help she really needs. 

She did call her insurance company advocate.  It helped not one bit. 

She answered me just now.  She had been asleep.  She missed a call from the dermatologist but she said their message didn't say anything about me calling so it might have  been a coincidence.  

She said she is going to start putting me on all of her paperwork as someone who docs can talk to to.

[J-rap]

If she's seriously interested in going to Mayo, I can recommend someone there.

[Scarlett]

6 minutes ago, J-rap said:

If she's seriously interested in going to Mayo, I can recommend someone there.

She is seriously interested and supposedly the heart doctor had started the process....but now nothing.

[Scarlett]

[Anne]

oh Scarlett, that's horrible.

I'm so very sorry - I'm praying for relief and help for your friend.  If I lived closer, I'd do somehting tangible.  

Anne

[Innisfree]

Scarlett, I have no idea how to help your friend, but I'm so sorry she's not finding help. That picture is just awful. I'd be tempted to take her back to an ER.

[Scarlett]

Well, to add to everything is the weather.  We are in the middle of an ice storm and the roads are horrible.  PLUS, I work in the public.  Not super high risk, but I have stayed away from her because I would die if I gave her Covid.  Not to mention ER never does anything for her.  It is crazy.

That pic is very typical.  And she sends me pics of her entire body that of course I would not share.  What she endures is mind blowing.  

[Katy]

That does not look like psoriasis to my non-physician eyes.  Maybe cellulitis, which would also explain the pain.  Is one of the hospitals near you Catholic?  They have a lot of ethical issues regarding certain treatments, but they often have a patients bill of rights about having pain controlled.

[Scarlett]

10 minutes ago, Katy said:

That does not look like psoriasis to my non-physician eyes.  Maybe cellulitis, which would also explain the pain.  Is one of the hospitals near you Catholic?  They have a lot of ethical issues regarding certain treatments, but they often have a patients bill of rights about having pain controlled.

It is definitely psoriasis.  The thing is she has 3 different KINDS of psoriasis.  She just sent me current full body pics.  She is so cute, she put a 'Oh Snap' sticker over her privates.  But yeah, it is bad.  She is hoping the new med will arrive tomorrow.  SKyrizi

[cintinative]

@Scarlett would the sympathetic urgent care doc be willing to write up a referral to Mayo (if that is all that is needed)? I am hoping it's not super involved, but I really have no idea.  You could also circle back for her with the heart doctor that went MIA. He may have been out of the office for an extended period. 

[Scarlett]

1 minute ago, cintinative said:

@Scarlett would the sympathetic urgent care doc be willing to write up a referral to Mayo (if that is all that is needed)? I am hoping it's not super involved, but I really have no idea.  You could also circle back for her with the heart doctor that went MIA. He may have been out of the office for an extended period. 

The referral is super involved.  And a lot of it has been done.  My friend has gather a TON of her own records.  In person.  But she needs the help of the heart doctor who has started the process.  It is just crazy.

 

[Scarlett]

This is the other type she has. 

 

Erythrodermic Psoriasis

This type is the least common, but it's very serious. It affects most of your body and causes widespread, fiery skin that appears to be burned.

Other symptoms include:

• Severe itching, burning, or peeling
• A faster heart rate
• Changes in body temperature

If you have these symptoms, see your doctor right away. You may need to get treated in a hospital. This type of psoriasis can cause severe illness from protein and fluid loss. You may also get an infection, pneumonia, or congestive heart failure.

[J-rap]

That looks so painful! How awful. I know it’s not unusual for something to help psoriasis for awhile, and then stop. Then you move on to something else for awhile. That’s fairly typical. Still, she should be seeing an expert so they can at least help her get it under better control. Does she have the arthritis as well? I may be able to send info that could be helpful. I’ll look into it and and PM you later today or tomorrow.

I know sunlamps can bring some relief but of course aren’t good for your skin in the long run, for other reasons.

 

[cintinative]

8 minutes ago, Scarlett said:

The referral is super involved.  And a lot of it has been done.  My friend has gather a TON of her own records.  In person.  But she needs the help of the heart doctor who has started the process.  It is just crazy.

 

UGH.  In that case, if it were me, I would probably start beating down the door of the heart doctor to get it moving. See if the office can email you a HIPPA form to have her fill out, or find one online and bring it with a letter from her when you go, so that they will allow you access to the doctor. If he is not in, maybe one of his colleagues can pick it up? I am so frustrated for her and you.

My mom has MDVIP and it's good, but very, very expensive, and they only take a certain number of patients. My guess is that getting her to see an MDVIP doctor and get this moving will take longer than just chasing down the heart doctor.  ETA: But you have to do what you have to do! If necessary, pursue MDVIP.

Edited February 10, 2021 by cintinative

[TravelingChris]

4 hours ago, Scarlett said:

I have never heard of this.  How do I find one?

I know my one is affiliated w MDVIP and they are nationwide. Also, look up concierge doctors in your area and surrounding areas.

[Scarlett]

4 minutes ago, J-rap said:

That looks so painful! How awful. I know it’s not unusual for something to help psoriasis for awhile, and then stop. Then you move on to something else for awhile. That’s fairly typical. Still, she should be seeing an expert so they can at least help her get it under better control. Does she have the arthritis as well? I may be able to send info that could be helpful. I’ll look into it and and PM you later today or tomorrow.

I know sunlamps can bring some relief but of course aren’t good for your skin in the long run, for other reasons.

 

She does have the arthritis as well and her feet and ankles already have quite a bit of damage.  I imagine if her skin was not on fire and burning and hurting she would notice the joint pain more.  I would appreciate anything you can do or send.  She will try anything.  In fact, I feel like she has been susceptible to scams because she is so desperate.

[TravelingChris]

15 minutes ago, cintinative said:

UGH.  In that case, if it were me, I would probably start beating down the door of the heart doctor to get it moving. See if the office can email you a HIPPA form to have her fill out, or find one online and bring it with a letter from her when you go, so that they will allow you access to the doctor. If he is not in, maybe one of his colleagues can pick it up? I am so frustrated for her and you.

My mom has MDVIP and it's good, but very, very expensive, and they only take a certain number of patients. My guess is that getting her to see an MDVIP doctor and get this moving will take longer than just chasing down the heart doctor.  ETA: But you have to do what you have to do! If necessary, pursue MDVIP.

I pay 1648 a year for my MDVIP and I don't consider that very expensive at all for the care I get (including nationwide access too to other MDVIP doctors when I am travelling).  Maybe the cost is different in different areas or your idea of very expensive in medical care is different from mine too.

And yes, beat down the door of the heart doctor.  But as to how long to get a MDVIP doctor=I got mine the same or next day=they have you set up an appt to meet with a doctor ( and I had several choices but choose the one who had the soonest opening because I really need a new opinion and a new doctor who could see me or talk with me when I needed it).   And if you like the doctor, you set it up.  We pay each of our fees quarterly with no interest for doing that.

 

But also, I think that she does need to be in the hospital.  That much of the skin being in that condition is most likely very life threatening.  And Psoriasis patients along with any other widespread open lesion skin disease patients like my dd1 and me with our various forms of exzema are super prone to having skin infections on top of the underlying autoimmune skin condition.  

But Scarlett, I completely hear you about incompetent ER places.  Both dd1 and dd2 has have had a lot of issues with ERs in some places.  DD1 specifically found ERs in a few places in MS to be basically unable to assist in anything except very common issues and sometimes not that.  It is well known around here that most of the rural hospitals can't deal with hardly anything.   So yes, I get it about useless ER- especially since dh has suddenly gotten into watching all sorts of weird ER stories- It started with Monsters Inside because he wanted to know more about all sorts of worms, etc that develop in bodies=but even with those stories, there are lots of accounts of idiotic misdiagnosis.  And my family has had plenty of our shares of them.

Edited February 10, 2021 by TravelingChris

[Scarlett]

I found a site called psoriatic.org.  There is an email and phone number to reach an advocate.  I told my friend I would help her write an email and she could attach pics and see if they have any ideas.  

[cintinative]

28 minutes ago, TravelingChris said:

I pay 1648 a year for my MDVIP and I don't consider that very expensive at all for the care I get (including nationwide access too to other MDVIP doctors when I am travelling).  Maybe the cost is different in different areas or your idea of very expensive in medical care is different from mine too.

 

If I recall correctly, my parents pay more than 3500 a year for just my mom and that doesn't include the billing for actual medical visits that go to Medicare. It's just an entry cost to see the doctor and get the annual physical.  My dad doesn't have care through them. It must vary by provider, etc.

[Junie]

Hugs and prayers.

Does she have a rheumatologist?  Is she taking a biologic?  If she has arthritis and psoriasis it is possible (likely?) that she has psoriatic arthritis and really should have a rheumatologist who can offer her some better treatment options.

Pain meds might help short term, but she really needs a long-term solution.  I hope that she can get in to Mayo soon.

 

[Kanin]

I'm so out of my league here, but I follow a few bloggers that have improved their psoriasis through the autoimmune protocol diet. Basically you just eat meat, vegetables, and fruit. That's it. No grains (gluten OR gluten free grains), dairy, nightshades, and other things. 

Here's someone's story: https://www.phoenixhelix.com/2020/06/05/dans-healing-story-psoriatic-arthritis-psoriasis-chronic-fatigue-syndrome/ This blogger said his pain was an 8-20 on a scale of 1-10. 

I have a friend that healed some other autoimmune issues using the AIP. 

If I was so, so sick, I would definitely try eating a very restricted diet for a few weeks to see what happened. That is, if I could cook meat + veggies while feeling so bad. 

[Ausmumof3]

I knew someone who’s hands would get like that. (Not whole body for her thankfully). After maybe 10 years of it she finally learned a specific ingredient in many soaps and shampoos was the issue and is now 100pc.  I hope somehow your friend gets a solution.  Has she tried going the naturopath direction?  I realise what she needs right now is something to reduce the pain but again I have seen someone have pretty good results from a weird herb concoction and gluten/dairy free diet.  
 

I know that this point she’s probably tried all the things but just in case...

[Scarlett]

1 minute ago, Ausmumof3 said:

I knew someone who’s hands would get like that. (Not whole body for her thankfully). After maybe 10 years of it she finally learned a specific ingredient in many soaps and shampoos was the issue and is now 100pc.  I hope somehow your friend gets a solution.  Has she tried going the naturopath direction?  I realise what she needs right now is something to reduce the pain but again I have seen someone have pretty good results from a weird herb concoction and gluten/dairy free diet.  
 

I know that this point she’s probably tried all the things but just in case...

This has been going on for 6 years I think.  Yes 6 years.  And the first year or two she did not have insurance and she tried all sorts of naturopath stuff.  A lot of which I think was quackery. She has been on every sort of elimination diet one can imagine.  She is currently eating a diet based upon a food sensitivity test she took.  It is a good healthy diet that I know will not hurt her, but I do not believe it is going to help her either.  But on the other hand I believe this is so complex that something inside of her is causing this.....sort of.  It is AI though so not sure what to even think of any of it.  This was all triggered by a case of Lymes.  They gave her massive amounts of antibiotics and she spiraled down from there.   

[Scarlett]

18 minutes ago, Kanin said:

I'm so out of my league here, but I follow a few bloggers that have improved their psoriasis through the autoimmune protocol diet. Basically you just eat meat, vegetables, and fruit. That's it. No grains (gluten OR gluten free grains), dairy, nightshades, and other things. 

Here's someone's story: https://www.phoenixhelix.com/2020/06/05/dans-healing-story-psoriatic-arthritis-psoriasis-chronic-fatigue-syndrome/ This blogger said his pain was an 8-20 on a scale of 1-10. 

I have a friend that healed some other autoimmune issues using the AIP. 

If I was so, so sick, I would definitely try eating a very restricted diet for a few weeks to see what happened. That is, if I could cook meat + veggies while feeling so bad. 

I just looked at the list of foods she sent me that she is eating and it is very restrictive.  Basically what you posted above.  And she has been on similar restrictive diets for months at a time many times over the years of this.

[Kanin]

8 minutes ago, Scarlett said:

I just looked at the list of foods she sent me that she is eating and it is very restrictive.  Basically what you posted above.  And she has been on similar restrictive diets for months at a time many times over the years of this.

Oh dear. That sound so hard.

AIP has a lot more nuance than what I posted above. Like, black pepper is not allowed, nor cumin because they're seed-based spices. I think you can't cheat if you want to see progress. My friend had great success, but that's jut one person. Maybe if she hasn't scrupulously tried AIP, it would be worth a shot. But who knows... it's probably a lot easier to undertake a diet when you're not feeling like complete crap. https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

[prairiewindmomma]

My advice, as someone who personally also has complex personal medical care:

1. She needs a doctor who is in charge of her care in general.  For "normal" people, this is your primary care doctor.  For her, it might not be.  As someone with psoriatic arthritis, her primary contact should be her rheumatologist.  They are the ones prescribing her biologics (and as I recall, she's been through a number of them).  When she has flares, she should be documenting the flare with photographs that she sends in via the patient portal. They can either manage her by phone or have her come in, or direct her to the ER.  In addition, all of her testing she has done with other doctors should be carboned back to this dr. She sees a cardiologist---bloodwork and testing results and visit summaries go back to whomever her primary contact is.  Someone competent needs to be big-picturing this for her.

2.  It is easiest if you work with doctors all in one hospital system.  So, cardiologist, dermatologist, rheumatologist, endo, whomever...should all be in the same hospital system, because then they can cross-access labs easily. This saves me literally thousands of dollars a year.  I also have all lab orders sent to the same place. there's no sense in having your rheumatologist run a CBC and then having your cardiologist do the same the following week.  You will start to see patterns in your own personal bloodwork over time and you can often head off problems that way. This is a bit trickier in small towns.  Sometimes there aren't enough specialists and the ones there aren't the best and the brightest.  If she's within a couple of hours of Dallas, she really should just drive and make a day of it for the bigger specialists and maybe have them coordinate with a local rheumatologist. I am saying this as a woman who drove hours for medical care when I lived in a small town in a Plains state.  I got much, much better care going to see competent people.

3. I totally understand why her husband is checking out. Being chronically ill sucks.  Her husband feels compelled to provide money and insurance, and yet no matter what they do, she is suffering.  People can't handle it, and they will often distance themselves. (This includes doctors, and is likely why she is getting the shuffle.)

4. She needs to be on a preventative antibiotic if she isn't already. That's open and weeping.  And, more to the point, that's wound care clinic territory.  Someone competent in silver dressings and other wound management needs to be training her to tend that at home.  That's beyond neosporin and a bandaid, especially if her skin is paper thin from steroid use.

5. Yes, steroids are a double edged sword and they often do more harm than good. Her dermatologist is not wrong on that point--but there needs to be a plan on moving forward.

6. Pain pills are likewise a double edged sword.  There are a lot of people who live in chronic pain daily. By nature, that's the sh!t end of autoimmune diseases.  I personally only take them immediately post-op, and only if I'm on the edge of screaming. Crying, throwing up, I won't take them. I have seen too many people have their lives trashed by pain pills or by coddling themselves.  This is hard for "normal" people to hear, but I'd .02 if you asked the other rheumy people here, most will agree with that.  

7. Restrictive diets have done nothing for me.  My autoimmune issues aren't triggered by allergies to what I eat or drink.  If she's tried several, she's probably figured that out too. I do recommend low sugar (because sugar is inflammatory), taking lots of vitamin D, and a good fish oil.

 

Where is her rheumatologist in all of this?

[Scarlett]

46 minutes ago, prairiewindmomma said:

My advice, as someone who personally also has complex personal medical care:

1. She needs a doctor who is in charge of her care in general.  For "normal" people, this is your primary care doctor.  For her, it might not be.  As someone with psoriatic arthritis, her primary contact should be her rheumatologist.  They are the ones prescribing her biologics (and as I recall, she's been through a number of them).  When she has flares, she should be documenting the flare with photographs that she sends in via the patient portal. They can either manage her by phone or have her come in, or direct her to the ER.  In addition, all of her testing she has done with other doctors should be carboned back to this dr. She sees a cardiologist---bloodwork and testing results and visit summaries go back to whomever her primary contact is.  Someone competent needs to be big-picturing this for her.

2.  It is easiest if you work with doctors all in one hospital system.  So, cardiologist, dermatologist, rheumatologist, endo, whomever...should all be in the same hospital system, because then they can cross-access labs easily. This saves me literally thousands of dollars a year.  I also have all lab orders sent to the same place. there's no sense in having your rheumatologist run a CBC and then having your cardiologist do the same the following week.  You will start to see patterns in your own personal bloodwork over time and you can often head off problems that way. This is a bit trickier in small towns.  Sometimes there aren't enough specialists and the ones there aren't the best and the brightest.  If she's within a couple of hours of Dallas, she really should just drive and make a day of it for the bigger specialists and maybe have them coordinate with a local rheumatologist. I am saying this as a woman who drove hours for medical care when I lived in a small town in a Plains state.  I got much, much better care going to see competent people.

3. I totally understand why her husband is checking out. Being chronically ill sucks.  Her husband feels compelled to provide money and insurance, and yet no matter what they do, she is suffering.  People can't handle it, and they will often distance themselves. (This includes doctors, and is likely why she is getting the shuffle.)

4. She needs to be on a preventative antibiotic if she isn't already. That's open and weeping.  And, more to the point, that's wound care clinic territory.  Someone competent in silver dressings and other wound management needs to be training her to tend that at home.  That's beyond neosporin and a bandaid, especially if her skin is paper thin from steroid use.

5. Yes, steroids are a double edged sword and they often do more harm than good. Her dermatologist is not wrong on that point--but there needs to be a plan on moving forward.

6. Pain pills are likewise a double edged sword.  There are a lot of people who live in chronic pain daily. By nature, that's the sh!t end of autoimmune diseases.  I personally only take them immediately post-op, and only if I'm on the edge of screaming. Crying, throwing up, I won't take them. I have seen too many people have their lives trashed by pain pills or by coddling themselves.  This is hard for "normal" people to hear, but I'd .02 if you asked the other rheumy people here, most will agree with that.  

7. Restrictive diets have done nothing for me.  My autoimmune issues aren't triggered by allergies to what I eat or drink.  If she's tried several, she's probably figured that out too. I do recommend low sugar (because sugar is inflammatory), taking lots of vitamin D, and a good fish oil.

 

Where is her rheumatologist in all of this?

This is an excellent post and I will comment more in a bit.  

[cjzimmer1]

1 hour ago, Scarlett said:

This has been going on for 6 years I think.  Yes 6 years.  And the first year or two she did not have insurance and she tried all sorts of naturopath stuff.  A lot of which I think was quackery. She has been on every sort of elimination diet one can imagine.  She is currently eating a diet based upon a food sensitivity test she took.  It is a good healthy diet that I know will not hurt her, but I do not believe it is going to help her either.  But on the other hand I believe this is so complex that something inside of her is causing this.....sort of.  It is AI though so not sure what to even think of any of it.  This was all triggered by a case of Lymes.  They gave her massive amounts of antibiotics and she spiraled down from there.   

If this started with antibiotics, I can't help but wonder about gut health.  I know someone on this board posted about a super high quality probiotic treatment that helped resolved long term issues the poster had.  But really if she's had or is having lots of antibiotics, definitely have her work on some good probiotics to rebuild her gut.

[Scarlett]

7 minutes ago, cjzimmer1 said:

If this started with antibiotics, I can't help but wonder about gut health.  I know someone on this board posted about a super high quality probiotic treatment that helped resolved long term issues the poster had.  But really if she's had or is having lots of antibiotics, definitely have her work on some good probiotics to rebuild her gut.

She thinks that too.  She has done many many rounds of probiotic as well as some diets for gut issues.  It is so frustrating.,

[Ausmumof3]

2 hours ago, Scarlett said:

This has been going on for 6 years I think.  Yes 6 years.  And the first year or two she did not have insurance and she tried all sorts of naturopath stuff.  A lot of which I think was quackery. She has been on every sort of elimination diet one can imagine.  She is currently eating a diet based upon a food sensitivity test she took.  It is a good healthy diet that I know will not hurt her, but I do not believe it is going to help her either.  But on the other hand I believe this is so complex that something inside of her is causing this.....sort of.  It is AI though so not sure what to even think of any of it.  This was all triggered by a case of Lymes.  They gave her massive amounts of antibiotics and she spiraled down from there.   

Yep I imagined it would be like that but thought I’d try just in case.  Hope your friend can get some help or relief soon that looks so painful.

[TravelingChris]

4 hours ago, cintinative said:

If I recall correctly, my parents pay more than 3500 a year for just my mom and that doesn't include the billing for actual medical visits that go to Medicare. It's just an entry cost to see the doctor and get the annual physical.  My dad doesn't have care through them. It must vary by provider, etc.

Where is she?  I am in Huntsville Al. and lower costs and also l⁹5s of land available on Redstone Arsenal is why the Air Force said their preference for Space Force is here

[cintinative]

Just now, TravelingChris said:

Where is she?  I am in Huntsville Al. and lower costs and also l⁹5s of land available on Redstone Arsenal is why the Air Force said their preference for Space Force is here

SW Ohio

[TravelingChris]

2 hours ago, Kanin said:

Oh dear. That sound so hard.

AIP has a lot more nuance than what I posted above. Like, black pepper is not allowed, nor cumin because they're seed-based spices. I think you can't cheat if you want to see progress. My friend had great success, but that's jut one person. Maybe if she hasn't scrupulously tried AIP, it would be worth a shot. But who knows... it's probably a lot easier to undertake a diet when you're not feeling like complete crap. https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

And those diets don't help most of us either 

[TravelingChris]

5 minutes ago, cintinative said:

SW Ohio

So I guess it totally depends on the doctor.  Or Cincinnati area is just d9 much more expensive for medical care.