1. < Autoimmune Diseases

Temporal Arteritis, PMR, RA

Posted by beaver @beaver, Jan 25 1:39pm

Hello,
I’m an 81 yr old woman. When I was 70 in 2012, I was diagnosed with TA~had headaches and jaw pain. I have a GP who recognized the symptoms and put me on very high prednisone. Subsequently , I found a wonderful rheumatologist and after about three years, being within normal crp and sed rates, I was completely off prednisone for about five years. Then, in 2020, I had bilateral knee replacement, necessitating blood transfusions. Several months later, I awakened one morning, and I could not lift myself up from the bed. Bingo! Welcome PMR! Have been up and down with prednisone, now 4mg. daily, with blood work within acceptable range.
I have had arthritic looking hands for years, but have always tested negative for RA…till now. Cyclic is 177, Ana screen negative, and Ra factor < 10. My new rheumatologist would like me to get off of prednisone and start a biologic such as Kevzara, or if not that, methotrexate. I’m questioning the wisdom of taking these meds, with their potentially very serious side effects, given my age.
Thank you to anyone who is still reading this! I don’t expect anyone to tell me what to do, but would appreciate any feedback on the results or side effects of these drugs. Any comments would be appreciated.
Many thanks,
Beverly

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beaver | @beaver | Feb 4 1:20pm
In reply to @valerie6062 "I am 80 year old woman and I was first diagnosed with PMR in 2015 ...." + (show)
@valerie6062

I am 80 year old woman and I was first diagnosed with PMR in 2015 . I am fortunate enough to have a good rheumatologist [difficult to find as we live in a rural region of NSW Australia]. I was free of PMR after about 2 years having been on decreasing dose of Prednisone. I was blissfully free for about 5 years. Then in 2022, after a very stressful time[moving house and our much loved dog dying] I developed classic symptoms of LCA or GCA [depends which country you live in].I was admitted to hospital in order to have 100mg infusion of prednisone. I was then eased down eventually to 5mg BUT then suddenly 2 months ago I had bad double vision and was immediately put back to 50mg. My blood tests were in normal range so I have become a mystery . Now both eyes are showing reduced blood flow [I had a fluorcein angiogram and a MRI ] ordered by my ophthalmologist . DRs now want me to have scan [either ultrasound or CT] of my neck in case the carotid artery is partially blocked . Through all of this I am now taking 10mg of prednisone and a weekly injection of Actemra. No apparent side effects. although one has to wonder . I do get fatigued quite quickly. Obviously I would love to have some certainty in my life and I do not want to become blind. I know this post is not particularly helpful but it does highlight how individual these auto immune afflictions are.

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Valerie, your post was very helpful! I intend to ask both my GP and optometrist about fluorcein angiogram and an MRI because of the persistent tender spots and crawling in
my head and a tickling sensation around my temples. My blood work is within acceptable range, so this is so hard to understand. No one has ever suggested those tests.
I’ve decided to try Kevzara, and I’m waiting to hear back from my doctor as to whether my insurance will cover it~still only on 4mg. prednisone daily. I still have sore upper arms from PMR, and some aches in my hands and wrists from RA, and fatigue is a problem. Doing my hospital volunteer work tomorrow, and that always makes me feel better.

REPLY
654321 | @654321 | Feb 4 3:41pm
In reply to @ess77 "@valerie6062. @654321, @beaver and all...Wow, Valerie. You've been through the wringer with these autoimmune attacks. I'm..." + (show)
@ess77

@valerie6062. @654321, @beaver and all...Wow, Valerie. You've been through the wringer with these autoimmune attacks. I'm so sorry for you to have to experience these and to this degree. At age 77 I suppose I'm heading in your general direction with the return of old illnesses and new issues. I'm praying the addition of the Methotrexate will help me reduce/taper the Prednisone. I've been at 20mg daily for the past 8 months, and the PMR appears to be stable to some degree...at least the pain and fatigue are slightly controlled, not improved, but steady. That's a win for now I suppose. I'm not sure what to expect from the Methotrexate so it'll be 'fun' to see how it goes.

I am very concerned about the GCA and my eyesight. I've had double vision for decades, in varying degrees of severity. But, it's now almost constant to the point that even closing 1 eye doesn't resolve the sight issue. I've developed almost constant blurring as well. Not totally blurred, just not able to see clearly! Yuck!!!!!

My rheumatologist last week referred me to ophthalmology for the double vision and an overall ck re autoimmune issues. Since developing Sarcoid when 40, I've had additional eye issues, severe dry eyes of course and the doctors are on top of the possibility of Sarcoid attacking my eyes. I've had a couple of bouts with it in the eyes that were helped with complete success by steroid drops. I saw so clearly then with no issues, but naturally that stopped when the drops stopped.

I have the determination to deal effectively, whatever that means, with what these autoimmune illnesses deliver my way. However, I will not do well without my eyesight. In fact, I'm not doing well at all with the current situation with my eyesight, as the double vision is truly debilitating. So limiting now for me and any movements, doing anything to function during the day is much more difficult and frustrating. I don't like it at all and don't seem to be able to make it better...So, I was thrilled when this wonderful doctor referred me for a new and closer look. I was diagnosed decades ago with MG due in part to the double vision. Nope. Not correct diagnosis. I never got a legitimate answer. I now wonder if GCA was creeping in for years and only now is fully attacking me.

I, like many of us, have given up so much of our lives already due to debilitating fatigue invading our entire lives and relationships! To difficulty breathing and using our lungs effectively! To various levels and times of pain, throughout our entire bodies! To eyesight changes! To brain fog and bone issues and feet problems and neuropathy and skin rashes and sores and thinning and hair loss and. and, and, and...

I will not handle additional sight loss well at all! You will hear me screaming all kinds of words from sunny Florida to wherever you live! So, fingers crossed that the referral goes well and they find answers and treatment...

Blessings to all, Elizabeth

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Sure hoping it goes well and your eyesight stays strong!!!

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