Well, on Thursday I had a Tilt Table test and it was positive. My blood pressure rose to 185/110 before taking a nosedive to 80/54 with me on the verge of passing out. My nurse then stopped the test and reclined the table.
I am pretty certain that I did not escape Sjogrens with my year on Pegasys. I also consistently have heart palpitations, now. I have had cardio tests and have confirmed that I have no additional problems. Palpitations happen daily, sitting, reclining and standing.
I follow up with my cardiologist in a week to see what the plan going forward will be.
I hope you all are doing better than I am!
Kim
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Wewo01
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I was hoping you quit in time, seems probably not. POTS could be your sub-Dx, (Postural orthostatic tachycardia syndrome) a core Sjo condition. I've also had increased palpitations, but for me it's just more of what I've had for years. Did you get the Holter monitor type test?
Welcome fellow Sjogie, I agree the MPN club is better place to be.
I don't have POTS so far, but plenty of the others. I suggest you check out smartpatients.com, I post as Sjoguy. Over there I post esp on current trials with comments. There are now ~6 drugs with good phase 2 results and/or in phase 3, vs zero ~ a year ago. There are three trials near me but the MPN among other things kicks me out.
Is your Rheum knowledgeable on Sjo? I see in your post last year your Rheum at that time was worse than useless, a too familiar experience with Sjogies. Dumping Sjo into fibromyalgia is a classic dud encounter. I hope you found a good Dr now. Sjo specialists are far more rare than MPN specialists, but most big cities have someone. But I just had a visit with one who cared only about dryness. She did find my case fascinating.
You will want to discuss HCQ (Plaquenil) infamous as a Covid cure. If you can tolerate, it may slow progression (sound familiar) and reduce some of the fatigue/pain etc. But it takes ~6 months to start working and you need eye checkups before and during. Add Leflunomide and this currently avail combo can reverse some Sjo Sx per a phase 2 trial. I'm severely intolerant to both. Another to discuss is low dose naltrexone (LDN). It helps many but ditto for me on the tolerance.
Hi EPguy! I was hoping I had quit soon enough, as well. Alas, it seems not. I still need to follow up with a different rheumatologist, soon. In April, I got wrapped up in starting a new job with Oracle. It was a grueling start, simply due to the volume of education courses I had to take! I work from home and have not had to travel since 2020. I could not tolerate the travel, now. Anyway, with all the new job stuff, I put off medical appointments but am getting back to prioritizing my health.
Thank you for the support and information! I am grateful.
If you could do all that work, your Sjo is sort of ok. My experience is IFN induced Sjo evolves quickly.
Working remote does allow you to ration the good hours for best use, a common Sjo tactic. Agree on the travel, pleasure or otherwise those days are over. Also my condition is too unpredictable for any social life.
I regret every day that Last Dose, and the vax that started it all. I do get occasional sets of decent days, two in a row max and rare.
Except, the new Sjo drugs could change the deal. For now the only thing that has an effect for me is TCM herb (Traditional Chinese med) and cevimeline for dryness, but that works only with the TCM.
Since I like plots, here is one for one of the most promising Sjo drugs in phase 3, Dazodalibep. Looks sort of like the IFN vs HU plot on VAF reductions. ESSPRI is the patient reported experience, only recently has pt experience been an endpoint. Sjo is less about numbers than MPN.
One problem with Sjo trials and some other A-I trials is a strong placebo effect, one reason for so many trial failures.
A couple things the Sjo expert said: my unusual route into Sjo could cause it to be self limiting (go away), and to keep up the Rux as it can help. I suspect for me my self limiting option was under way till that Last Dose killed it.
I definitely am able to work the hours to my advantage, thankfully! Even with all the education classes I had to take, I was able to do all self study, so I was able to stop and start as needed. I cannot see myself working away from home.
I've had completely opposite experiences with Pegasys. Before Pegasys I had POTS syndrome and heart palpitations and bouts of rapid heart beat. All gradually vanished after getting some initial phlebotomies to thin my blood and being on Pegasys for several months. Now still doing fine after 9 years on Pegasys.
If I were in your shoes I'd consider experimenting with dietary adjustments and/or trying various beta blocker and blood pressure meds to see which ones make you feel better.
I was born with scoliosis and until I was 44 told my fault round shoulders stand up straight . Really good Dr also diagnosed with fibromyalgia. Over the years other Dr . Said all I'm my head. A letter sent to my hospital Dr. Said my occupation was sitting in his surgery. I have sjogrens.ET MPN . Glaucoma cataract s and muscler degenerative . Why do we have to convince Dr. We are ill. I'm 74 and my bloods were taken but put on iron tablets. Never until last year were my platelets taken a look at. Last week my Dr. Said I. Was anaemic and needed iron. I said I had blood cancer she hadn't seen my notes.. what the hell!
See my reply to Tipsy2023. the combo you list of of fibromyalgia and "all in my head" are the bin careless Drs too often put Sjo pts. At least with MPNs we can show numbers to prove it, Sjo is a tougher case.
Wewo's case of POTS is very likely connected to Sjo, triggered by IFN. POTS can naturally have other causes and your suggestions are proper, but at the core, Sjo has no decent Tx and doesn't get better. We're looking for that to change soon.
See the illustration I posted below.
Hence my endless nagging to watch for A-I emergence while on IFN.
Sorry to hear the news. Unfortunately, we all respond differently and all of our treatment options come with risks. It is very important for the MPN community to be aware of the potential consequences of medications, how to evaluate and respond to them, and to continue to expand treatment options for MPNs.
I have been told for fifteen years or more that I have uncontrolled hypertension and labile blood pressure meaning it would rise to over 200/120 at times . My normal Bp anywhere from 170/90 to 140 /80 at its best . Medication having little effect Felodopine in recent years does its best to stop hi highs.
A regularly irregular heart beat for many years then episodes of fibrillation.. with no conclusion from physicians or cardiologists ..
after a referral to the stroke unit by my Gp he put me on Clopidogrel which is protocol he was trying to hasten referral which instantly seemed to regulate my Bp .i have remained on as I was then diagnosed with ET having had raised platelets 9 years without being told .
I already had a Sjogrens diagnosis for years but no suggestion this could effect anything with regard to heart or Bp ..
I have though in last 5 years had dizzyness which seems to be associated with eating and possible postural hypotension so have now been referred back to cardiologist … ..
The test you have had has never been suggested so thank you for your post at least they may not look at me for the umpteenth time and say none of these things are connected . They may not be ,
but at least they can eliminated things rather than wait until I collapse again in a heap unable to stand up… so a positive L
Hi Tipsy! Definitely ask about a Tilt Table test! My BP is also not well controlled. My cardiologist gave me amlodipine 5 mg to take as needed when my BP spikes over 160. But now with the POTS diagnosis I don’t know if I should continue. I see my cardiologist next week. Good luck to you!
Sjogrens can cause most or all of the troubles you are experiencing including "collapse again in a heap", and explain your concern "none of these things are connected". This is a "quick-read" card we came up with on my other forum, it explains our reality. There is another larger version, you can learn a lot on SjogrensAdvocate site.
If you consider IFN at some point, your Sjo puts you at increased risk of a bad outcome as noted in the IFN label. Unfortunately there is no good resource to learn about this, this forum is the best one I know of.
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Antibody test
Newly diagnosed with ET 
Very high B12 blood results
Blood test
