Pacemaker

[zylodey]

I was wondering if anyone else on here has had to get a pacemaker? I have been in remission for about 2 years now and just recently went for a pacemaker appointment and it is no longer capturing, meaning I would need new leads put in. However, since being in remission, they have found that I rarely use my pacemaker, so have decided for the time being not to proceed with surgery to replace the leads. The benefits at this time just did not outweigh the risks of surgery. I am wondering if this has happened to anyone else.

[pberggren1]

Good to hear you are doing well. It must be a good sign that you rarely use it anymore. I forget, is the reason you needed the pacemaker related to Wegs at all?

[zylodey]

Hi Phil! Hope you are doing well too. Yes my pacemaker is part of Wegs, so I am wondering in a worse case scenario how a flare has affected other people whose heart has been affected by Wegs. If during a flare they noticed any issues with their heart. I haven't been able to find too much information about heart involvement and wegs.

[Lightwarrior]

Hi Phil! Hope you are doing well too. Yes my pacemaker is part of Wegs, so I am wondering in a worse case scenario how a flare has affected other people whose heart has been affected by Wegs. If during a flare they noticed any issues with their heart. I haven't been able to find too much information about heart involvement and wegs.

Well, I'm in the middle of a flare right now. Just saw my Rheumy yesterday. Luckily, I have had no heart involvement but I do see my cardiologist formally once a year, but he questions me about once a month when he sees me in the unit. So far no hemorrhaging just rash, shortness of breath and intense joint pain. I am so guarded with my time off that I am working. I need the time for when I go out on disability which I hope is end of December because then I will have enough time built up to cover me for 2 of the 3 months I won't have income. My daughter should have finished her CNA classes by then and be working. Anyway, sorry I digressed.

He increased my pred to 40mg for a week then he will do the pulse therapy if it hasn't backed off. He wants to do 40 first since I have had two previous pulses and he said that another pulse increases my chance for necrosis and I don't need a bad hip. He also increased my Methotrexate from 15 to 20 and changed it to IM instead of PO. I hope this works, my spoons are low and my boss is freaking out that I am working. She understands but is afraid I am going to shorten my life. But you have to do what you have to do, right. This is hump day and I only have today and two more days and I can rest through the weekend.

[drz]

Well, I'm in the middle of a flare right now. Just saw my Rheumy yesterday. Luckily, I have had no heart involvement but I do see my cardiologist formally once a year, but he questions me about once a month when he sees me in the unit. So far no hemorrhaging just rash, shortness of breath and intense joint pain. I am so guarded with my time off that I am working. I need the time for when I go out on disability which I hope is end of December because then I will have enough time built up to cover me for 2 of the 3 months I won't have income. My daughter should have finished her CNA classes by then and be working. Anyway, sorry I digressed.

He increased my pred to 40mg for a week then he will do the pulse therapy if it hasn't backed off. He wants to do 40 first since I have had two previous pulses and he said that another pulse increases my chance for necrosis and I don't need a bad hip. He also increased my Methotrexate from 15 to 20 and changed it to IM instead of PO. I hope this works, my spoons are low and my boss is freaking out that I am working. She understands but is afraid I am going to shorten my life. But you have to do what you have to do, right. This is hump day and I only have today and two more days and I can rest through the weekend.

Hope you get good results from this treatment plan and receive lots of warm fuzzy thoughts coming your way. Take care of yourself and hope for success in your treatment.

[KathyB]

Zylodey -- sounds like a different wrinkle to this crazy disease. I have no heart involvement but wish you continued good health and your prognosis is strong.

Lightwarrior -- Hang tough!! You are always such a positive force in our forum! Please protect yourself and take good care!!

KB

[Dirty Don]

A handful of spoons to you Light...keep on keepin on...

[Barry]

I had heart involement. The very first thing was a triple bypass. Less then six months later sinuses to the point I was almost deaf. By the anniversery of by bypass I was in the hospital again with renal failure and about a quarter of my lungs affected by WG. But a diagnosis. I have been in remission for over a year. Kidneys run normal, most of my hearing back, and while I was borderline for a pacemaker before my last test puts me a good distance from that line. My cardiologist believes my heart issues are WG related.

[drz]

I had heart involement. The very first thing was a triple bypass. Less then six months later sinuses to the point I was almost deaf. By the anniversery of by bypass I was in the hospital again with renal failure and about a quarter of my lungs affected by WG. But a diagnosis. I have been in remission for over a year. Kidneys run normal, most of my hearing back, and while I was borderline for a pacemaker before my last test puts me a good distance from that line. My cardiologist believes my heart issues are WG related.

That is one of the most remarkable comebacks I have heard about. My doctors have told me my recovery was rather miraculous but yours seems even more amazing to recover both kidneys and hearing especially after a triple bypass. Great to hear about your remission.