Polyarteritis anyone?

Posted by efg4me @efg4me, May 31, 2023

I was recently diagnosed with Polyarteritis and I haven’t seen a rheumatologist yet(going on June 1st) My emotions are all over the place and although I’m a nurse (LVN) Im in uncharted territory and idk what to expect from my first appt. What should I ask, what do I need to know? I have some other complications that will make medicating this difficult. I didn’t expect my flesh to hurt this badly!! The disgusting lesions that are now all over my legs hurt and itch, but chunks of my flesh has started hurting and I’m nervous, scared, uncertain and also excited that I’ve been diagnosed finally!! I believe I’ve had this for years and it explains so much!! HELP🥰

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@efg4me

I’m nowhere near being an expert on the subject but maybe you’re in remission (that’s the goal, I think???)

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@efg4me, you may also be interested in this discussion that @SusanEllen66 started:
- My Journey with Polyarteritis Nodosa (PAN) https://connect.mayoclinic.org/discussion/relapse-of-vasculitis-pan/

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@efg4me

Thank you for your reply! I had a gastric bypass some time ago and that complicates the whole thing. Very little steroids (met with terrible pain) and zero NSAIDS, allergic to sulfa (which rules out dapsone)
They’re gonna have fun with me… on my way to the appt now. Thank you for all your support! (It’s so cool!)

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@efg4me can you do infusions? Maybe methotrexate?

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@efg4me have you checked out the Vasculitis Foundation website? They have some really good resources however very little on Polyarteritis Nodosa.

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@SusanEllen66

@efg4me can you do infusions? Maybe methotrexate?

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I saw the specialist yesterday and she’s recommending methotrexate. I’m unclear if it will be an infusion, self administered injection or oral (although I don’t think she would prescribe oral route) She did give me an injection of steroid and even though it was a very small dose, my stomach hurt tremendously last night and today!! I have taken all I can take to help it, so now, I wait and get my head busy thinking about ANYTHING ELSE!! Thank you for your kindness!!

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@efg4me

I saw the specialist yesterday and she’s recommending methotrexate. I’m unclear if it will be an infusion, self administered injection or oral (although I don’t think she would prescribe oral route) She did give me an injection of steroid and even though it was a very small dose, my stomach hurt tremendously last night and today!! I have taken all I can take to help it, so now, I wait and get my head busy thinking about ANYTHING ELSE!! Thank you for your kindness!!

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@efg4me even an injection!
Oh my.
So, an infusion would be worse…
How about transdermal?
Is there a cream or patch strong enough?
You need something ASAP!

I’m sitting here thinking…
When you had your stomach surgery, did they give you any alternative suggestions for what you are experiencing now?

Oh, TRY THIS!
When my stomach is upset I can rub peppermint essential oil mixed with a little cream on my belly. I rub it all over my middle around my navel. It really helps! Get some Therapeutic Grade peppermint essential oil. You can’t use it directly on your skin. It must be mixed with cream or anything else.
Even smelling it will help!
Let us know how you are doing. You are not alone!
Blessings
Susan

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@SusanEllen66

@efg4me even an injection!
Oh my.
So, an infusion would be worse…
How about transdermal?
Is there a cream or patch strong enough?
You need something ASAP!

I’m sitting here thinking…
When you had your stomach surgery, did they give you any alternative suggestions for what you are experiencing now?

Oh, TRY THIS!
When my stomach is upset I can rub peppermint essential oil mixed with a little cream on my belly. I rub it all over my middle around my navel. It really helps! Get some Therapeutic Grade peppermint essential oil. You can’t use it directly on your skin. It must be mixed with cream or anything else.
Even smelling it will help!
Let us know how you are doing. You are not alone!
Blessings
Susan

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Thank you! I make homemade Body Butter and other bath products so I have therapeutic grade essential oils, high quality butters, moisturizing oils; I’ll try that.
As for my stomach pain, even topical NSAID’s can hurt your stomach. It has to do with prostaglandin (also, COX 1 and COX 2) that contributes to inflammation but also protects the stomach from digesting itself. When you don’t have a completely functioning stomach (after gastric bypass) damaging what’s left of your stomach is super easy. (That’s the best way I can describe it)

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@efg4me

Thank you! I make homemade Body Butter and other bath products so I have therapeutic grade essential oils, high quality butters, moisturizing oils; I’ll try that.
As for my stomach pain, even topical NSAID’s can hurt your stomach. It has to do with prostaglandin (also, COX 1 and COX 2) that contributes to inflammation but also protects the stomach from digesting itself. When you don’t have a completely functioning stomach (after gastric bypass) damaging what’s left of your stomach is super easy. (That’s the best way I can describe it)

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@efg4me wow! That’s a tough situation. The best thing I can do is pray for your recovery.

I like hearing that you create body butters, and bath products. That sounds like a very creative way to relax, and enjoy the fragrances of nature.
For me, I started fiddling around with acrylic paints and canvas about 3 years ago. I have no talent, however every once in awhile something happens and I create something special. Recently, I started creating art, and colored glass using alcohol inks. That’s a very versatile medium! I learn by watching YouTube videos.

I’m retired and when I get tired in the afternoon, I will paint for an hour or two and then go take a nap.
I have fibromyalgia too so my energy level is low most of the time. Now, I’m going for a sleep study to rule out narcolepsy. That’s a story in itself…zzzzz

Blessings
Susan

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@SusanEllen66

@efg4me wow! That’s a tough situation. The best thing I can do is pray for your recovery.

I like hearing that you create body butters, and bath products. That sounds like a very creative way to relax, and enjoy the fragrances of nature.
For me, I started fiddling around with acrylic paints and canvas about 3 years ago. I have no talent, however every once in awhile something happens and I create something special. Recently, I started creating art, and colored glass using alcohol inks. That’s a very versatile medium! I learn by watching YouTube videos.

I’m retired and when I get tired in the afternoon, I will paint for an hour or two and then go take a nap.
I have fibromyalgia too so my energy level is low most of the time. Now, I’m going for a sleep study to rule out narcolepsy. That’s a story in itself…zzzzz

Blessings
Susan

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I pray they find answers for you quickly! I was a nurse but covid screwed up my brain and body, then came Polyarteritis! The thing about autoimmune disorders is they “travel in triplets”! (That’s what I call it; not sure everyone would agree, but 🤷‍♀️) Fibro, Polyarteritis and I’m waiting for the 3rd (most likely thyroid but we’ll see)

My skin got so dry after I moved to a new state and I lost my job during covid because after 90 days they told me I was terminated. So I started using any recipes I could find to make Body Butter and finally found my perfect mix! There was too much left over for me to use, so I started selling them at a local artisan market and it kind of just “took off”!
I used making it as my own personal physical therapy. I made a lot of mistakes with recipes because my brain fog was so intense. I treated the recipes like medication orders and if I messed up I took it hard (like if the recipe was a prescription then it would been a med error) Physically it takes hours to make Body Butter and it took some time to build up my stamina for being in my feet for hours, whipping, piping, wash the greasy dishes, start another fragrance, etc.
I would love to see that art! My sister started “pouring” On canvas and it’s so beautiful!!

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@efg4me

I pray they find answers for you quickly! I was a nurse but covid screwed up my brain and body, then came Polyarteritis! The thing about autoimmune disorders is they “travel in triplets”! (That’s what I call it; not sure everyone would agree, but 🤷‍♀️) Fibro, Polyarteritis and I’m waiting for the 3rd (most likely thyroid but we’ll see)

My skin got so dry after I moved to a new state and I lost my job during covid because after 90 days they told me I was terminated. So I started using any recipes I could find to make Body Butter and finally found my perfect mix! There was too much left over for me to use, so I started selling them at a local artisan market and it kind of just “took off”!
I used making it as my own personal physical therapy. I made a lot of mistakes with recipes because my brain fog was so intense. I treated the recipes like medication orders and if I messed up I took it hard (like if the recipe was a prescription then it would been a med error) Physically it takes hours to make Body Butter and it took some time to build up my stamina for being in my feet for hours, whipping, piping, wash the greasy dishes, start another fragrance, etc.
I would love to see that art! My sister started “pouring” On canvas and it’s so beautiful!!

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@efg4me quipped about waiting for her 3rd autoimmune related health issue as they “come in threes”

@efg4me, you may have your “three” if you find credible the correlations reported in this April news article on the “Nature” website citing increases in new vasculitis DX following COVID infections.
“High risk of autoimmune diseases after COVID-19” https://www.nature.com/articles/s41584-023-00964-y

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@efg4me

I pray they find answers for you quickly! I was a nurse but covid screwed up my brain and body, then came Polyarteritis! The thing about autoimmune disorders is they “travel in triplets”! (That’s what I call it; not sure everyone would agree, but 🤷‍♀️) Fibro, Polyarteritis and I’m waiting for the 3rd (most likely thyroid but we’ll see)

My skin got so dry after I moved to a new state and I lost my job during covid because after 90 days they told me I was terminated. So I started using any recipes I could find to make Body Butter and finally found my perfect mix! There was too much left over for me to use, so I started selling them at a local artisan market and it kind of just “took off”!
I used making it as my own personal physical therapy. I made a lot of mistakes with recipes because my brain fog was so intense. I treated the recipes like medication orders and if I messed up I took it hard (like if the recipe was a prescription then it would been a med error) Physically it takes hours to make Body Butter and it took some time to build up my stamina for being in my feet for hours, whipping, piping, wash the greasy dishes, start another fragrance, etc.
I would love to see that art! My sister started “pouring” On canvas and it’s so beautiful!!

Jump to this post

@efg4me
I should probably do a Private Message for this but what the heck.

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