Are specialists necessary?

Thanks for sharing your story. I was my husband's caregiver for years (he died of something else not germane to this discussion) so I empathize with your wife! But it's got to be hard to be led around by your partner--I sympathize with you, too. It sounds like love and self-preservation are duking it out, marital-style. I consider the health professionals, too! In our stressed-out, polluted world it must be very interesting to try to diagnose and treat all the diseases and syndromes that walk through the door at a clinic, especially now that scientific inquiry itself is being challenged and medicinals have become an industry. At such a juncture as this I am feeling well enough in my flare thanks to tapering doses of prednisone and prioritizing healthful living (diet, exercise, rest, connectivity). I also take into consideration the advice of my naturopathic doctor who steps into the conversation to suggest nutritional supplements (after deferring to my medical team for diagnosis and treatment plans). In the end, I think stepping back from it all and communing with our own inner wisdom (God, in my book) gives me the perspective to learn what there is to learn from life's experience, find gratitude and acceptance, and be at peace. That's the medicine that I can take with me no matter whom I see, what I take or do, and whether I thrive or struggle through this phase of life. It sounds preachy, but I'm going to say it: love is the answer. So, love to everybody out there!

I believe in God! I was planning on having a face to face visit with God eventually. I admit to being irritated with God so I was looking forward to having a chat with him sometime in the future. I didn't see any need for all the pain I had for 30 years.

An amazing thing happened. I posted a message on a chronic pain forum similar to this one. The topic was "Alternatives to Prednisone." A person responded to me and explained things to me. She was in a coma for 6 months after having an adrenal crisis. She had adrenal insufficiency due to her many years of prednisone use. She had adrenal failure.

While in a coma she claimed that she was "sent back" for some reason presumably to have a chat with me. She didn’t want me to have the same fate.

She had lots of details to share about prednisone. She recommended certain medical specialists to help me get off prednisone. Four years later ... I was off Prednisone. I got a lot of help from medical specialists.

Had it not been for the person on the chronic pain forum, I no doubt would still be taking prednisone. Now if I have that face to face visit with God … I don’t have too many questions.

My GP diagnosed my PMR, prescribed prednisone then referred me to a rheumatologist. My GP also sent me for a vascular ultrasound to rule out GCA while I waited to see the rheumatologist. In the end she also was the biggest help managing my taper off the prednisone.

I saw the rheumatologist 3 times. Other than offering to prescribe Kevzara when I struggled to get off the prednisone the rheumatologist didn’t really do much for me.

Other than the rheumatologist who diagnosed my PMR and prescribed prednisone I’ve never received any useful medical advice from any of the other 5 rheumatologists I’ve seen.
I canceled my last appointment and decided not to waste my time or theirs. I now rely exclusively on advice from two support groups and my own body awareness and intuition.
I wish it were otherwise but it just isn’t.

I feel very fortunate to deal with my rheumatologist and his PA. They helped me through a very difficult time when I almost lost my vision from GCA. They prescribed Actemra to help taper off prednisone more quickly, and gave me a taper plan that has worked well so far. Also they're easy to contact if I need anything. I can call or email their office, and they have an off-hours emergency number that is always staffed. They have always gotten back in touch with me quickly whenever I had any problems or questions.

I actually think that may be the point of this disease. That and (for me) learning to shift gears and priorities to actually take care of this gift of life.

I'm just wondering what you would consider to be "useful medical advice." The standard of care for PMR is prednisone and wait for PMR to burn itself out. After remission is achieved, a slow taper off Prednisone is the standard advice. My rheumatologist "encouraged" me to taper off prednisone as soon as possible to minimize the risk of long term side effects.

People probably don't need more medical advice than this except when people are unable to taper off prednisone in a timely fashion. All the side effects from my long term prednisone use were handled by my primary care doctor. My doctors deferred to an ophthalmologist for cataracts, high intraocular pressures and other problems with my eyes.

My rheumatology visits during my 12 years mostly consisted of evaluating my pain and inflammation levels and checking on how much prednisone I was taking.

I needed a ton of prednisone but I always had a prescription when I needed more. I was grateful for all the encouragement to taper off prednisone as soon as I could and 12 years was too long to be on prednisone daily. Other than trying all of the standard steroid sparing medications, there wasn't much more that could be done under the circumstances.

After some initial confusion and a personality conflict with my first rheumatologist, a second rheumatologist diagnosed me with PMR. After that I had the same rhematologist for 12 years. She had empathy for my pain and understood how difficult it was for me to taper off prednisone. I didn't expect more than that.

Were you able to regain your vision? I am so glad you had the help available when you needed it! And that you have established a trusting relationship with your medical team. That's really a blessing.
I wonder if blindness is an outcome for everyone who has GCA? And if so, how they are dealing with it? That's another thread, but I am interested in hearing more about your experience.

Yes, I kept my vision. The day I was diagnosed with GCA, I went to the emergency room after losing the vision in my left eye for a few seconds. It was like looking at a blank gray wall. I thought that it might be a stroke. During the next 16 hours after that I lost the vision temporarily about 7 more times. The time got a little longer with each event, with the last one lasting maybe 45 seconds to a minute. What I was seeing in that eye was very strange. Some colors disappeared, and other colors became more prominent. It was a lot like an impressionist painting. I was admitted to the hospital for 3 days so that I could get an IV infusion of high dose methylprednisolone (1000 mg) each day. After that I was on 60 mg prednisone for 6 weeks, and I've been tapering the prednisone and taking weekly Actemra injections since then. I see an ophthalmologist regularly to check the health of my eyes from the GCA and prednisone. So far I haven't had any more problems.

I just googled about blindness from GCA, and it said up to 20% of people with GCA have blindness in one or both eyes. A lot of the outcome depends on seeking treatment in time to save your vision. My understanding is that once you have received high dose prednisone to treat GCA, vision loss after that is very uncommon.

Thanks for your interest.

I’m so glad to hear that you’ve had a positive experience for the most part with your health care.