I Have All My Answers

[kafie]

 Hey everybody!

I got some serious answers lately and I'm kind of excited about it all... and since I'm probably driving my doctors and friends nuts with this I thought I'd share with you guys.

So earlier this year I was diagnosed with seronegative rheumatoid arthritis. RA runs in my family and so I didn't really question it. My CRP was elevated (15, out of range that's supposed to be <3) but the rest of my blood work was clear (I have on and off anemia and occasional elevated ALT (liver stat))... and something with the diagnosis didn't sit right with me.

We started me on Sulfasalazine about a month and a half ago. It really helped the arthritis - reduced the severity and frequency of flares (d*** do I wish they were completely gone, but I can handle the pain provided it doesn't go over a 5 on the pain scale)... but a rash that appeared when the arthritis became bad enough for me to talk to a doctor about came back. My son has struggled with a rash since birth so luckily I tend to keep my skin pretty well moisturized on my hands, so it have gotten as bad as I assume it would.

I spoke with my rheumatologist and he piped up with "oh, maybe you have psoriatic arthritis". I'm familiar with the condition but it wasn't even on my radar (IBD was though... Which... Shocker, commonly co-occures with PsA). It even connects with POTS - both involve Th1 inflammation - as does... Apparently IBD (I have GI inflammation but it hasn't been diagnosed as IBD... The gastro pretty much just shrugged it off) and PCOS (which I have diagnosed based on blood tests... They've never found a cyst)).

I just about lost my mind over it... all this looking for answers, and just like POTS... I looked into it and wrote it off because symptoms weren't severe enough or didn't fit the picture to my satisfaction (of course... I'm trying to check off every box and symptoms that fit the clinical picture to perfection and a severe extent).

So I'm feeling really angry with myself because the symptoms were there - I've probably had psoriasis for a long time but it just wasn't bad enough for me to do something about it. I kinda feel like it's my fault that all of this was a mystery for so long.

Of course, I'm also really satisfied that I figured it out. It feels so much like a weight has been lifted. I have answers! To EVERYTHING!!! That... Is an incredible feeling. Especially knowing that POTS has to be connected to something, and now I know what it's connected to and why my POTS symptoms worsen with my arthritis flares!

It's been a weird, wild journey this last year and a half. I felt through a lot of it that I was just losing my d*** mind (not that that's a stretch!). But that feeling is settling and dying down now.

The last piece here is to see a dermatologist and get the formal diagnosis... but I'm not even sure that's necessary - I can manage the rash well enough and as long as it doesn't crack and bleed it doesn't bother me that much. Though I think I may take my rheumatologist up on it just to have that satisfaction (just right now I see so many doctors that the idea of adding another feels a little overwhelming).

So... how are you all doing? I hope you're well. Happy holidays! (And a merry Christmas to me... I'm turning into a dragon apparently, lol!)

 

[StayAtHomeMom]

I am very excited for you!! I am sure it is a giant relief to finally have some answers. I would definitely see the dermatologist. I see one because of my acne (it is gone now but I do follow-ups still). She has been an amazing doctor over these last few years. She always has something new for me to learn or try. I just went this week and found out the one cream that is basically rentinal a can be put on then a moisturizer on top of it. I thought mixing creams would dilute the power of them. 

[kafie]

It is a HUGE relief!

I figure I will eventually see the dermatologist after my endless doc visits are over (I have three next month and that's enough for me... Though I might end up cancelling one because it was a test I needed for a medication I might not be continuing). It'd probably be good to get some tips about the rash so maybe I can keep it from flaking (there is no amount of moisturizer that does that - I make my own body butter for my son's skin (because he had "eczema" as a baby (idk, maybe it's psoriasis - he still has a patch on his earlobe but it's mostly gone now)), made from shea butter, jojoba oil, hemp seed oil, and a little extra vitamin e... It only keeps my skin from getting to the cracking/bleeding point - though a little hydrocortisone takes care of the erythemia nicely).

[StayAtHomeMom]

10 minutes ago, kafie said:

It is a HUGE relief!

I figure I will eventually see the dermatologist after my endless doc visits are over (I have three next month and that's enough for me... Though I might end up cancelling one because it was a test I needed for a medication I might not be continuing). It'd probably be good to get some tips about the rash so maybe I can keep it from flaking (there is no amount of moisturizer that does that - I make my own body butter for my son's skin (because he had "eczema" as a baby (idk, maybe it's psoriasis - he still has a patch on his earlobe but it's mostly gone now)), made from shea butter, jojoba oil, hemp seed oil, and a little extra vitamin e... It only keeps my skin from getting to the cracking/bleeding point - though a little hydrocortisone takes care of the erythemia nicely).

My mom's favorite lotion was a goat's milk "bar" she found at a local craft fair. Homemade. She has the same issues with extra dry skin on her feet and hands. 

[Pistol]

Hello @kafie - I am happy for the progress you made with getting to the cause of your symptoms. One thing to consider: when your body is fighting chronic inflammation ( in your case RA, IBD etx ) it is constantly stressed and therefore will make POTS symtpoms worse. You also have auto-immune issues, so that does too. I'm in the same boat - I have arthritis in my spine and other joints as well as IC ( chronic bladder inflammation ) and GI issues including IBS. My ESR is always elevated due to the body trying to fight all the inflammation and it wears us down. So if you treat the inflammation then the POTS should get better as well. In my case I always feel much better when the inflammatory symptoms are not as bad and will have a lot of arthritic etc symptoms when I am in a flare. --- Also: I am not able to take NSAIDS si I take a strong Turmeric supplement ( a recognized and proven anti-inflammatory ) and it works wonders for me. I am not sure if it is strong enough for RA pain but maybe worth a try? --- Merry Christmas to you as well and I wish you a HEALTHY 2019!!!!

[kafie]

4 hours ago, Pistol said:

Hello @kafie - I am happy for the progress you made with getting to the cause of your symptoms. One thing to consider: when your body is fighting chronic inflammation ( in your case RA, IBD etx ) it is constantly stressed and therefore will make POTS symtpoms worse. You also have auto-immune issues, so that does too. I'm in the same boat - I have arthritis in my spine and other joints as well as IC ( chronic bladder inflammation ) and GI issues including IBS. My ESR is always elevated due to the body trying to fight all the inflammation and it wears us down. So if you treat the inflammation then the POTS should get better as well. In my case I always feel much better when the inflammatory symptoms are not as bad and will have a lot of arthritic etc symptoms when I am in a flare. --- Also: I am not able to take NSAIDS si I take a strong Turmeric supplement ( a recognized and proven anti-inflammatory ) and it works wonders for me. I am not sure if it is strong enough for RA pain but maybe worth a try? --- Merry Christmas to you as well and I wish you a HEALTHY 2019!!!!

I have been considering asking my rheumatologist about tumeric. My father (who has RA) has been looking into it too but hasn't tried it yet. Luckily I really, really like Indian curry, which has a fair amount of tumeric (I'm sure it's a lot less than there is in a tablet though).

Unfortunately I'm not supposed to take NSAIDs as well (I'm on two medications (Sulfasalazine & Fludrocortisone) that increase my risk of ulcers. Being the nutcase I am, I still have taken naproxen when the pain is too much (sparingly though... And it only takes 1 tablet to do the job now (it used to take 2-3 to make it bareable))... but I try not to.

 

I just figured out that I've had palmar-plantar psoriasis for probably 10 or more years - which explains a whole lot (I've had arthritis symptoms for about 5 years, it just got a whole lot worse over the last year and a half... it was probably subclinical before that).

I have been applying hydrocortisone to  a small spot on my foot where I've had "athlete's foot" for a very long time. I used antifungals on it for years and it never did anything... but now it's almost clear. I guess the two look very alike - it's diagnostic though because this should make it worse if it were fungal.

That plus what looks like a plaque on my ankle, the thickened nail, and the rash on my hands pretty much nails that down. I'll probably still go to the dermatologist to get it medically diagnosed (and, yeah, it'd be nice to get some pointers about the acne)... but that was kinda the last piece for me (mostly in that I was curious about the feet because it never transferred to my husband, which was curious considering tinea is extremely contagious).

 

I might also try removing dairy from my diet. I'm lactose-intolerant anyways and some people find it helps with autoimmune stuff.

Some people think I'm a bit crazy about seeking out diagnosis... but they don't live in my body and often think I'm just sick because I have a poor lifestyle...

But this gives me a direction to go. Knowledge is power. Since I know what's going on I can figure out what I can do to help improve the situation.

#1 is remembering to take my medication reliably though. 😅

[StayAtHomeMom]

2 hours ago, kafie said:

Some people think I'm a bit crazy about seeking out diagnosis... but they don't live in my body and often think I'm just sick because I have a poor lifestyle...

But this gives me a direction to go. Knowledge is power. Since I know what's going on I can figure out what I can do to help improve the situation.

#1 is remembering to take my medication reliably though. 😅

I totally agree. I have to know what is going on with my body. What I thought was always normal is actually not. 

And yes, knowledge is power. The more you understand about what is going on, the easier it is to deal with stuff. 

I have a lot of issues with taking my meds too. I got through spurts for my allergy meds. The only thing I take reliably is my metoperlol. And even that I should take it twice a day. Normally I only take it in the morning

 

[Terri]

Gaining the right diagnosis is so important. Awesome that you finally received yours! You mentioned cutting out dairy - gluten free has proven to help many (not everyone unfortunately) with autoimmune. And have you looked into LDN? There’s a facebook page called GOT ENDORPHINES LDN that might help you with information about this drug. Again, helps many with autoimmune but not everyone. 

[Pistol]

@kafie - regarding the turmeric: use a good quality supplement that is combined with black pepper, this increases the level of Turmeric in the blood. it REALLY works, even my PCP ( who does not typically recognize herbal supplements ) recommends this to his patients since there are many studies done that prove it to be an effective anti-inflammatory.  You had mentioned psoriatric arthritis ( spell? ) in one of your other posts. Does a dry, scaly, flaky spot on the nose count? I have this off and on on my nose or cheek. -- I am a firm believer that diet is a way to combat disease, so going off dairy is a good idea. My mother was very ill with POTS symptoms and she went on the elimination diet, went off most foods and then slowly introduced them one by one back into her diet. She found out that certain foods ( like chicken and vanilla ) caused her problems. So then she got checked for food allergies and these foods showed up as an allergy!!!! Now she does not eat them any longer and feels better. My M-I-L has sjorgren ( auto-immune ) and also found certain foods trigger her symptoms. ---- Knowledge IS power as you stated in your post. When I first got sick and no one knew what was going on I researched my symptoms and told my doctor that I had hyperadrenergic POTS before seeing a specialist - and I was right! Without doing my homework I would not have known to see an autonomic specialist. We have to be in charge of our own health - so do not listen to those who poo-poo our efforts. Most likely they are too healthy to worry, but we are not. Best wishes!!!!

[kafie]

On 12/19/2018 at 4:24 AM, Pistol said:

@kafie - regarding the turmeric: use a good quality supplement that is combined with black pepper, this increases the level of Turmeric in the blood. it REALLY works, even my PCP ( who does not typically recognize herbal supplements ) recommends this to his patients since there are many studies done that prove it to be an effective anti-inflammatory.  You had mentioned psoriatric arthritis ( spell? ) in one of your other posts. Does a dry, scaly, flaky spot on the nose count? I have this off and on on my nose or cheek. -- I am a firm believer that diet is a way to combat disease, so going off dairy is a good idea. My mother was very ill with POTS symptoms and she went on the elimination diet, went off most foods and then slowly introduced them one by one back into her diet. She found out that certain foods ( like chicken and vanilla ) caused her problems. So then she got checked for food allergies and these foods showed up as an allergy!!!! Now she does not eat them any longer and feels better. My M-I-L has sjorgren ( auto-immune ) and also found certain foods trigger her symptoms. ---- Knowledge IS power as you stated in your post. When I first got sick and no one knew what was going on I researched my symptoms and told my doctor that I had hyperadrenergic POTS before seeing a specialist - and I was right! Without doing my homework I would not have known to see an autonomic specialist. We have to be in charge of our own health - so do not listen to those who poo-poo our efforts. Most likely they are too healthy to worry, but we are not. Best wishes!!!!

You'd have to get a dermatologist to look at it honestly. One thing to note would be if it responds to anti-inflammatories (like hydrocortisone)... but that kinda only tells you half of it (eczema is also caused by inflammation)... There area a couple different types of psoriasis and also atypical presentations. Plaque is the most common which shows us as a red rash with white scales, overtime this thickens because the body over-produces skin cells*. But there are also varieties that cause blisters and really strange looking rashes which are less common and probably harder to diagnose.

*Edit: I'm actually probably wrong on that... and it's not exactly over production of skin cells...... If I remember correctly it's a build up from the inflammation damaging collagen cells and what builds up is actually the products of that... But it can appear as very thick, dry skin.