For those with comorbid autoimmune disorders: has your POTS gotten worse over time?

[lamp_girl]

I'm thinking specifically Sjorgen's, but happy to hear about others too-- does the autoimmune disease mean you have an easier time treating the underlying POTS? Did it make the POTS symptoms more progressive?

[StayAtHomeMom]

I have not been diagnosed with an underlying cause yet. But in my research it shows if you treat the underlying cause POTS should resolve or at least lessen. I am hoping to find my underlying cause this year. I suspect my oldest son has POTS and after he gets tested (in Dec) hopefully it will provide some clues. Autoimmune runs heavy in my family but my ANA keeps coming up negative so I suspect my underlying cause is something not treatable. I hope it will be though

[p8d]

I second @StayAtHomeMom.  A number of current research suggests autoimmune causes in at least some of us.  Do a search on this forum for Celltrend and IVIG therapy.  Lots of info there.  Dr Schofield has a recent article on IVIG therapy in those with comorbid autoimmune diseases and IVIG.  80-some percent saw improvement in dys.  

@StayAtHomeMom keep pushing for testing.  If you have other symptoms a good rheumatologist will treat regardless of tests.  I was tested every five years or so for 30 years and 3 times in 18 months after getting sick before an ANA showed positive.  After a few months on Plaquenil I started feeling better, nothing with dys but a lessening of the fatigue a bit and joints in hands and feet felt better.  Nothing dramatic but every little bit helps and it allowed me to get to PT.  I still flare in everything and I can rarely tell what is setting off what unless the joint pain and mouth sores pop up but I understand it now and rest.  The very first specialist I saw was a not so good rheumatologist who looked at the blood tests and said I was fine.  My current one is familiar with Dysautonomia.  Will your PCP prescribe a short course of steroids to see if you respond positively?  That’s a good clue.  

[Pistol]

@p8d - I was always told to avoid steroids at all cost due to them mostlikely elevating BP and HR in hyperPOTS. Is that not the case for you?

[StayAtHomeMom]

I took a burst of steroids (doc thought it may help my breathing). When I came off my body hurt so bad I was shocked. It dulled back into the background after a few weeks but I never realized how bad it really was until I didn't have it. And honestly NSAIDs have never really touched the pain unless it was through the roof. I was 29 at the time. 

I tried a second burst after my diagnosis. It was not as high and I felt no difference. 

I have recurring rashes bad this year. My symptoms point to an autoimmune but I can't find a blood abnormality to prove it. My allergist said don't worry about it. It doesn't matter what kind they treat them all the same. But I have to know the answer. And different treatments for different autoimmunes in my research. 

I am planning on a rheumatologist appt after my son gets tested to rule out or in hEDS. My boys and I are apparently very flexible (thought it was normal the everyone can reach all the parts of their back) and I suspect my mom is hyperflexible as well (hard to tell now she has RA). 

I hope for the autoimmune because I would love to get rid of my POTS. But my research shows there no help if it is hEDS. 

[StayAtHomeMom]

4 hours ago, Pistol said:

@p8d - I was always told to avoid steroids at all cost due to them mostlikely elevating BP and HR in hyperPOTS. Is that not the case for you?

I could see long term use causing an issue but not so sure about short term use. 

[p8d]

@Pistol @StayAtHomeMom I did a medrol  dose pack early on before diagnosis that helped with the fatigue/pain a lot.  At first I wasn’t nearly as hypertensive as I am now and now steroids do raise my BP and give me tachycardia., pretty badly, even just a dose.  Not sure why the difference except age and dys creep.  

I also am frequently surprised at how much worse I feel going off meds.  You don’t know what you’ve got till it’s gone and come back?  

[StayAtHomeMom]

23 hours ago, p8d said:

@Pistol @StayAtHomeMom I did a medrol  dose pack early on before diagnosis that helped with the fatigue/pain a lot.  At first I wasn’t nearly as hypertensive as I am now and now steroids do raise my BP and give me tachycardia., pretty badly, even just a dose.  Not sure why the difference except age and dys creep.  

I also am frequently surprised at how much worse I feel going off meds.  You don’t know what you’ve got till it’s gone and come back?  

I agree. It's like I forget how bad I feel without meds