I have been reading every day just not posting much. I’ve been debating on how much to share for a couple of weeks now. Still not sure as I haven’t made any decisions going forward but am running out of time and have to decide pretty quickly.
As some of you may remember I spent Dec. fighting a post-op infection, started to come back to “normal” and had a stroke (rather unexpected I might add) in January. Anyway I was rehabing hard until I had some “dizziness” a few weeks ago. The cardiologist started working me over when My BP rose to 210/90 during an exercise echocardiogram.
They started treating me for Hypertension with little to no effect. I kept telling them it wasn’t Cardiovascular related, and while they agreed, they felt it necessary to open the doors of the pharmacy to blood thinners (for the stroke) ace inhibitors, beta blockers of several types etc etc.
Finally the blood work came back we had to send to Johns Hopkins and I had been saying for several months was confirmed it was PsA related (now only 1/100,000 have these complications so don’t freak) The Proteinase 3 Antibody (Wegener’s granulomatosis) and Myeloperoxidase Antibody (organ limited vasculitis including necrotizing and crescentic glomerulonephritis) were of the wall. The diagnoses is ANCA-associated vasculitis. Biopsies have confirmed Kidney, and Lung involvement and imaging studies confirm cardiac involvement.
I have yet to decide what I’m going to do. The treatment is High dose Steroids ( I do mean High dose three pulses of methylprednisolone (1000 mg each), followed by prednisone at a dose of 150 mg per day. and taper starting at 5 months) along with either intravenous rituximab or Cyclophosphamide - loose your hair and throw up a lot type meds my choice)
Not sure what I will do if anything. Organ failure is a game of wack a mole, but we shall see. Can stress AGAIN take your meds early and as big a gun as you can get???
Thanks for ketting us know Lamb, not an easy one to share. Only you can make your decision, and you are at a different stage of life to me, but… I know what you’d say to me
Hi tntlamb, you sure have had the lion’s share of everything PsA has to offer. And, from things you’ve told us along the way, the lion’s share of life experiences–good and bad! You are a very interesting person, and you sure have done a lot for all of us here and who knows how many others we don’t know!
Thank you so much for all you’ve done for me as far as information about our shared disease as well as gentle and stern encouragement along the way.
You seem to take on life’s challenges with lots of courage, and I know you can muster up the courage and strength to get through this one, too!
So sorry, though, that you’re having to make some tough decisions. Whatever path you choose, you’ve got the blessings of all of us here at LWPsA!
I would ask ‘what to do?’ when life, or rather PsA, throws all this at you. But you’ve been explaining and demonstrating exactly what we all need to do to live well with this disease for years now, you’re the loudest, funniest, most cantankerous (and kindest) as well as brilliant authority I know on both PsA and life in general. Bloody awesome.
Gosh. Please have the biggest cyber hug from me. Last year you very kindly and very necessarily gave me the best boot in my behind anyone ever has. Which has had a lasting effect and which has made me live all the 'today’s since with such a better attitude. You helped that happen along with the comments from many of others of you in support. That was one helluva a gift to give this scrapping, hissing, spitting, angry cat of a person who first presented herself on this forum then.
So just remember I and I would imagine very many of us on here will ‘have your back’, ‘cover your back’ or anything of that nature whenever you need it. What a journey this disease is demanding you now follow. So I too will be thinking of you so much.
sigh Tom. This disease really has shot everything in its arsenal at you, hasn’t it? You are our mentor and our authority on all things PsA, not to mention everything else. I endorse Sybil’s pronouncement that “you’re the loudest, funniest, most cantankerous (and kindest)” . You’re also the person who encouraged me to stand up for myself and seek the best expertise and treatment that I could. And I’m not the only one! That push you gave me has made an unimaginable difference in my life and in the lives of many others. I owe you, tntlamb! Bigtime.
Whatever your decision is about treatment, it will be the right one for you. If there’s one amongst us who can figure out the ifs, the buts, the upsides and the downsides, it’s you. And yes, I’m one of the many here who, as Pooh says, “has your back”.
My daughter (35) called me while on her honeymoon to let me know her doctor wanted her in his office that day she returned. As is her habit she was keeping a secret from me. This was a big one. She has cervical cancer and had surgery a few days after getting home. The wife took off immediately and I was barred from the state of Kansas. (with the same vehemence that bars me from using either the washing machine or dishwasher)
Jessie is at home, her doc is communicating with me and the surgery follow-up treatment will be decided next week sometime. We are still waiting for additional path reports as I had them specimens sent to several “centers of excellence” My wife got home just as I was starting the chain saw last night (we have a lot of downed trees from a nasty spring snow yesterday) The chain saw has been added to the list of no nos. We should be going back for the planning meeting and start of treatment next week or so.
We compromised on treatment after consulting with Brian Mandell at the Cleveland Clinic. I’m taking daily steroids upped the MTX and discontinued folic acid to make the MTX more potent and eliminated most carbs from my diet. It appears for now that things are under control as my ANKA scores are decreased as well as ESR and CRP numbers and my BP is down from the low 200’s to 110/70 (my normal BP). I’ll be having an ICM installed (Implantable cardiac monitor) installed likely in the next few weeks so my cardiologist can keep track of me while we take care of my daughter. I get an echo every 3 weeks to keep track of the thickening atrial wall and a monthly Pulmonary Function Test.
I’m getting plenty of exercise as I am taking loads of diuretics and Beta blockers so I’m regularly “going” The other cool think is after stopping the Folic acid, the ringing in my ears went away…
The final diagnoses is Wegener’s granulomatosis. In a bit of trivia. the actual disease is now called Granulomatosis with polyangiitis (GPA) Wegener who discovered the disease and had it named after him was a Nazi. In a politically correct move the medical community attempted to purge all the German diseases named after Former Nazis (or sympathizers) Granulomatosis with polyangiitis was so tough long to write out its never caught on so Dr. Wegener got to keep his disease (one of the few)
The funny thing is whether it is my regime or focus on my daughter, I haven’t felt quite this good since before the stroke…
I can completely understand that you feel somewhat better physically. I don’t understand the mechanism but it’s a phenomenon I’ve experienced when other people become so much more important than anything else.
Very best wishes for your daughter’s good recovery. It’s the worst thing when our kids are having a rocky ride. Keep away from the damn chainsaw, you need both arms to hug her!
Does the addition of this piece of hardware now also add the microwave to the “off limits” list. Glad you’re beginning to feel better but its tough to know that your family is suffering other medical issues, too. Hope that snow melts fast.
I’m glad to hear that you’re having some improvement, even in the midst of everything else going on. Best wishes to your daughter. That’s a pretty tough start to her marriage.
Glad u feeling better and decision made…sometimes making a decision helps me feel better. …i feel more in control. So hope your daughter gets good path results.
The scourge of cervical cancer, me and both my sisters have had varying levels of that. Me and one sister got caught utterly early with minor procedures but one sister didn’t and had proper invasive surgery. So please give your daughter all of my good thoughts. So glad now most young women can be vaccinated against it too.
As for you, you make me laugh - your poor wife having to chase around after you saying ‘no don’t touch that!’ So delighted you’re feeling so much better too - that’s the best bit.
