72 yr old from NE Pennsylvania, US - Vasculitis UK

Vasculitis UK

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72 yr old from NE Pennsylvania, US

jofrable profile image
3 Replies

It has taken more than 2 years, to run down accumulating symptoms to be diagnosed with "some" form of arteritis.

Over time, have had arthritis knee replacements, carpal tunnel, trigger fingers

Pleural blood clots, DVT

2 transfusions for 6.0 anemia

Kidney stones leading to parathyroidectomy

Jaw and neck issues that dentist missed

Finally 2 ER trips for sharp head pain where I had the same Dr who found a sed rate of 94.

Prednisone relieved issues almost immediately. However, have switched to methotrexate IM. Incidence less common here, so I stumbled upon your site. So am white female, scotch Irish heritage, 72 yo. So....what's new and working?😅

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jofrable profile image
jofrable
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michichgo profile image
michichgo

Hi Jo.

I hail from near Chicago and have found this site to be a phenomenal source of support and information.

I was diagnosed with MPA vasculitis in 2013. The disease did some significant damage to my kidneys but I was diagnosed mere weeks before needing dialysis.

Although I was on methotrexate for awhile, I was ultimately switched to Rituxan. I receive infusions biannually.

I hope the metho is working for you.

Your vasci pal from the states,

Michele

michichgo profile image
michichgo

Also, make sure you check out the vasculitis web sites of both UK and US vasculitis groups:

vasculitis.org.uk

vasculitisfoundation.org

Best wishes for good health!

cjatthesea profile image
cjatthesea

Jofrable, sounds like you have gone through a lot in the last two years. I'm not generally on this site....only.occasionally checking out vasculitis. I'm from the coast of South Carolina. Two years ago I was diagnosed with GCA and PMR. Had suffered some symptoms the prior 20 months. Dealing with inept doctors. You might want to check out our site. Some of your symptoms are very similar to GCA and PMR. Head pain ....especially eye issues or visual disturbances should not be ignored. Your mention of prednisone helping quickly is what really grabbed my attention. It's the only med for GCA/PMR. Others such as MTX are sometimes used as a prednisone sparing drug but will not take care of the symptoms. There is a ton of knowledge on our site. It's amazing. As they say " Knowledge is power ". I'm a long way from being well....never cured. Prednisone is a terrible drug....also a wonderful drug ;-) For the first years, doctors were allowed to make too many decisions. Eight trips to the ER for Flares. Seven of them caused by doctors. For this last year....had no Flares. Some problems but no Flares. Hubby and I manage my condition. The site has set us in the right direction. We have hope.

I'll be praying for you to have a better future. CJ

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