Temporal Arteritis, PMR, RA

Hi P,
I’m not a doctor, but I hope you have a rheumatologist who is monitoring your blood work so you don’t lose any vision. Yes, I’ve had, and occasionally still have, very tender spots in my head, sometimes very sore to the touch. I just recently went through a spell of that, now it’s much better. I have never noticed any swelling. I urge you to apprise your rheumatologist of all your symptoms to prevent losing any vision.
Beaver

Hello everyone,
I can’t begin to tell you all how important being able to communicate with you has meant to me. I don’t know if any of you have experienced the apathy from friends that I have, but being able to talk to someone, anyone, about my situation is a blessing. In fact, after reading some of your stories, I’m thinking I’m in pretty good shape~for the shape I’m in!
I’m fortunate to have been completely off of all meds, including prednisone, from 2015 to 2020, when GCA flared and then was diagnosed with PMR, now RA. I’m at 4 mg. Prednisone now, but my sed rate is inching up so that may change. I have a standing appointment at the lab for every 4 to 6 weeks. My decision now is what to do about the RA. For the last three days I’ve been almost pain free, but I know that won’t last long.
Talking into you all has allayed my fears of biologics; I’ve pretty much ruled out methotrexate due to my GI issues. At 81 years old, I have to decide now how I want to spend the rest of my life with the time I have left.
Beaver

So good to read about people with same issues! Battling with prednisone down to 6 and hope it will
Be o k . Taking acterma injections also. So challenging

@654321, @beaver, and all...It sounds like you've made some decisions about your treatments and are moving forward. Congratulation!

Beaver, you're at a place in your thinking process dealing with the plethora of medical issues we in the autoimmune community face daily, where I was a couple of years ago. It was a turning point in my life caring for myself like none other. I had a difficult diagnosis, have been helping my 55-year-old now 100% disabled and dealing with my growing limitations, and made some difficult decisions we all must face at some point.

I didn't stop fighting. I am a quite determined woman, focused on solutions, have been forced into making my own decisions alone most of my life, and am very alone now. As we know happens every year we get older...I continue to fight tooth and nail for my well-being, my son's well-being, and our health care, and I fight the medical system daily in some way...but, I accepted my life, my body, my health, my illnesses, and my situation from the inside out. What a change in my life!

Acceptance.

I'm 77 in 2 weeks! YEA! That's a good thing. I let my hair go all natural...I'm a lovely gray-haired woman who embraces her gray, and loves my body as it is!!! so very not the way I'd like, but it is as it is! I'm embracing getting older, thrilled to be in this position of getting older. But, as you said, I make decisions now about my body, my life, and my care based on acceptance of my mortality, on the fact my body is more fragile than I'd like, and that there are procedures, treatments, and medications I don't think will improve my life or make me healthier, live longer or indeed enjoy life more. When faced with those options, I chose to say yes or no based on how I think my body will react to the treatment. Do I think the next infusion or this medication will make my life better? Will it lengthen my years and improve their enjoyment?
If not, then nope. I'll not do it. I think possibly, I'll consider doing it. If yes, then yes I'll do it.

I've been taking 10mg of Prednisone now for the last 8 months. Tried to taper off but the PMR and GCA pain returned severely and I'm staying presently at 10mg. I'll see my rheumatologist this week and we'll go from there. He's found increased SED rate, high urine protein, wonky blood work in some areas, and good in others. I have another new autoimmune disease on top of these and more, so we'll see what he suggests. I'll hopefully take hydroxychloroquine in addition to Prednisone to help taper off the Prednisone or perhaps go on another steroid and biologic, or whatever, to perhaps get this thing in remission. It's very rare and no way to know. But, if the treatments help reduce the discomfort, great. If they help with remission. Great. If they don't, I'll deal with that and accept it as life. My life.

Thank you for sharing. It's the most helpful part of dealing with these issues. Your sharing, allowing and welcoming me to share with you, helps us all get through tough times we don't understand nor know how to deal with effectively. So, thank you so much, every one of you. You are dear, special friends...my Connect Friends from around the world!!!!

Blessings, Elizabeth

Hi everyone,
Since my last message, I feel I now have to make a decision regarding what meds I should take. I was feeling quite good~no RA pain in my hands or wrists for almost a week, and PMR pain minimal.Last night it all came back with a vengeance. Sooo, should it be methotrexate, Kevzara, or Actemra. Pros and cons please on these meds.
Beaver

@beaver, and all...I'm so sorry you've had a relapse! No fun! Yucky situation...I sent a message just now about my appointment yesterday with my rheumatologist. I'm now taking 7.5mg Methotrexate once weekly only!!!, and a Folate supplement with 10mg Prednisone. This is designed to reduce the PMR, GCA, and Sarcoid symptoms, pain, etc. Methotrexate assists the steroid and allows us to taper off the steroid with better results and more easily. I believe doctors are interested in limiting the steroid intake...I've taken Prednisone often since I was 40 years old...77 now...with many/most of the side effects causing me lifetime issues. We want to limit those at this point as much as possible! I'll not at this time be on any other treatment for the autoimmune issues. We'll see how things go and move forward...

Hope this helps. Blessings as you deal with these yucky developments. Know you have a lot of support right here! Elizabeth

I am taking acterma and have been pleased so far. Down to five mg of predisone . Nervous because this was what I was on when big hospital stay with temporal arteries and triple A surgery with three stents. sure is a fighting battle . So glad to talk with people who have the same issues.

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.

Sure hope you get better soon. It is a mystery disease for sure and very frustrating. So good to hear from other people with it.

@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