Giant cell arteritis:I’m afraid and would appreciate any advice

Hi @anya and welcome to Connect. You have had quite the journey in the last handful of years and you have come to the right place to meet some members that know what you are going through.

I would like to invite @crhp194 and @morninglory to this discussion to talk about giant cell arteritis, polymyalgia and their experience with prednisone for those illnesses. They may be able to provide some insight on your concerns with prednisone.

I would also like to invite @barbararene, @charlena, and @jchatchett who have discussed using prednisone for PMR and may also be able to offer some insight on Prednisone.

You may also want to check out the Sjogren's discussion happening on Connect. You can find that here, http://mayocl.in/2gYI8Uv.

@anya, with your diagnoses, it is reasonable to have concerns about your labs. Have you discussed the anxiety you feel about your labs with your physician and requested a more thorough answer on each of your lab results?

I am so sorry you are having these problems. I have been on prednisone in the past for polymyalgia and giant cell aoritis. In both cases the only real problem I had with prednisone was a giant appetite and gaining a lot of weight. After being tapered off of the prednisone the weight started coming off, thank heavens.
The most important thing I would do in you situation is to find a doctor that I could freely converse with and get the answers you seek. I have been very fortunate in having a doctor that completely explains test results and why she is prescribing a med. for me. Your frustration does not seem to me to be unwarranted, you need a competent, communicating doctor. If you are located in the Midwest I cannot praise Mayo Clinic in Rochester, Minnesota enough.
They have some of the best doctors in the U.S. Please seek out someone you can relate too. All my best wishes to you.

Anya, am so sorry you are alone and have no support system. I have giant cell arthritis which was diagnosed when I had open heart surgery for a large aneurysm. I too was put on prednisone and methotrexate. Fortunately I was able to tolerate the methotrexate. Have you tried taking the methotrexate with food. I have been mildly nauseous on the day I take it and fatigued, but the day after I am fine. The prednisone is being tapered off and I will take it for a year. All this was done at Mayo Clinic. Is there a way you could get to Mayo. Doctors there are so concerned with their patients and will spend the time you need to explain all your questions. In addition, if you call the clinic, a person will direct you to the right place, both for doctors, and will direct you to places to stay etc. once there, I am sure you would go to a rheumatologist and the vascular area. Plan to stay a few days for tests. I cannot recommend any better place than the Mayo Clinic.
Good luck to you!
Carol Periard

My Mother was sick for months, complaining of fatigue, joint pain, weight loss and then jaw pain. She was seen by her Primary for months and they kept sending her home with Nasal Sprays. It came to a head when my Wife a former Nurse brought my Mother in for an "emergency visit." They had her come in during the lunch hour and began picking on her, saying' "you were just here a few days ago, you're not having a stroke." My Wife asked the P.A. what her diagnosis was and she said, " Congested Jaw." My Wife said she had never heard of such ab ailment. That was the end of their interaction as the P.A. then shut my wife out of the conversation. They basically patted my Mother on the back and said call this weekend if you are not feeling well. Sunday, Father's Day, my Mother was having a little blurry vision out of her Left Eye. I tried to get her to go to the ER, she said , "no, not on Father's Day." I told her if her sight was not better in the morning she was going to the ER. I checked her thru the day Sunday as her team the Red Sox were on TV. Monday morning, not better, not worse. I take her to the ER. Again, they start out with ruling out a Stroke, CAT Scan. But the ER doctor sends for Blood Work with a order to have SED Rate checked, this is not in a normal ER Blood Test. Her SED Rate was 58. He sends us out of the hospital to the Eye Doctor on-call, his office is a block or 2 away. The ER doctor said to go directly there. We were there hours and the Eye doctor kept checking her Eyes and telling me something was wrong and all these bad things that could happen. On his worksheet he had GCA/TA for diagnosis. We leave the check up room and go into an office while he is on phone. He sends us back to hospital for a C-Reactive Protein Test and going out the door asks who my Mother's pharmacy is and then says,"you can pick it up on your way home." No sense of urgency. We did pick up the pills, 80mg of Prednisone daily. That was Monday, Tuesday my Mother wakes up Blind in both Eyes !! Many screw up bu all involved. Her Rheumatologist from the hospital got on her knees and gave my Mother her "Professional Apology", the first 2 time we saw her. She has since moved back to California but did tell me she wrote everything up and the docs are in her former office at the hospital. Of course those files came up missing. The Rheumatologist did call me and tell me everything she wrote about my Mother's lack of timely diagnosis and treatment and it blasted all 3 entities, the Primary, the ER and the Eye specialist. Instead of being sent out of the hospital, why wasn't IV treatment started? Instead of going back to the hospital for a C-Reative Protein Test, a diagnostic tool for something you already had diagnosed, why weren't we sent back to the hospital for IV treatment? I have been back to the hospital trying to recover notes. The "ethics Administrator" told me, this won't go to court, we don't want that and neither do you. Anyway, we have a lawyer and I am doing a little work on my own and need to know how we contact, or if anyone knows a doctor, who would be an expert witness in my Mother's case. We need someone and need the suit to be able to keep her home. She was a vibrant woman who ran the food shelf at Church and did much for our family. Always on the go. Now, she sits in darkness, it's not fair.

Hi @petel,

I am so sorry to hear about your mother! I can only imagine how upset you must be with such negligent behavior, and I want to thank you for sharing your mother's story. As patients, we consult physicians, expecting their knowledge and skill to bring some relief. Unfortunately it sounds like the lackadaisical approach of your mother's healthcare team has rightfully given you a cause of action for negligence against them.

I would like to introduce you to @cowboy1997 @jeff5500 @tdrell who've also had bad experiences, and may be able to relate to your poor experience with healthcare providers – not respecting or taking the time to listen to your complaints, acting rude, ordering unnecessary tests or misdiagnosing which has resulted in profound damage to your mother's health.

@gailb has written about healthcare problems experienced by patients, doctors, and hospitals, and I'd also like to invite our Mentors @johnbishop @windwalker @kdubois to join this conversation.

Although it may be a tough undertaking, it seems like you've made the appropriate decision, especially when your loved one's health is at the centre of your concern. @petel, you wrote, "...we need the suit to be able to keep her home." Could you explain what that means or entails? Does your mother have the care she needs, right now at home?

Hello @petel,

Thank you for being a strong advocate for your Mother. I cannot imagine the pain and anguish you both have been through trying to get help. You are right...it is definitely not fair. I'm glad you have a lawyer and hoping they will be able to help you and your Mother. I hope the other Connect members tagged by Kanaaz (@kanaazpereira) will be able to share their story and provide some helpful information.

I can relate somewhat to your situation but ours was not as bad and we decided not to pursue litigation. My wife had a gall bladder attack and I drove her to the ER at our in network hospital in the middle of the night. They quickly diagnosed the problem and sent us to St Mary's ER. The doctor there wanted to do surgery that night to remove the gall bladder but because my insurance company wouldn't pay for it, they made us schedule the surgery to remove the gall bladder the following week at our in network hospital (non-Mayo network). Long story short, I was in the waiting room for almost 5 hours when it supposed to be a one to two hour laparoscopic surgery. The nurse came out and asked me if the doctor had talked with me yet and I said no. She said she would have him come out and explain what happened. There I sat for what seemed like an eternity wondering what happened. The doctor came out still in his scrubs and seemed like he was covered in blood. He explained that they "nicked" an artery and she almost bled out but she would be OK. She was in the hospital for three days recovering and came home with a drainage bag attached. She went back to the hospital for a follow up and they discovered bile was still leaking and they would have to do another surgery. The doctor told us our insurance company had authorized three consultations with Mayo Clinic specialists - one who he said was the world renowned expert in gall bladder surgeries. We went to the Mayo Clinic and met with the specialist and 3 other people who I assume were doctors - the first question we were asked - "what did the doctor tell you happened?". So right away I'm thinking they are worried about litigation and I'm only worried about my wife. They schedule the second surgery at Methodist Hospital and it was successful. While I was in the waiting room during the surgery, I overheard two other men talking to each other when one asked the question "what is your wife having done?". His answer "oh, they are fixing a botched gall bladder surgery done at X hospital". I would have like to not have paid two hospital bills but I put that on my insurance company who I no longer have. I was happy to have my wife back and the end result of the whole ordeal was she lost over 100 lbs and has been able to keep the weight off. She is now much healthier that I am.

Hoping for some answers for you.

John

My Mother is home. It's a battle. The people that evaluate her, to see how many hours of respite time she qualifies for are terrible. For instance, after the first 2 evaluations, I decided to sit in on the third. They had my Mother lay in her bed and then try to get up to make her way to the Bathroom. She always gets up out of bed and turns Right, which is the wrong way, so they had someone there to guide her Left. Then, they posted someone at the end of the bed because 99% of the time she takes a Left at the end of the bed, she is supposed to go straight. In short, they guided her the whole way and back. When I got the results of the evaluation, they said she had gotten "better" at negotiating her home and cut her hours! At this time I do 3 overnights. I go to my Mother's house at 9 PM and get relieved at 7 AM. It is draining to say the least because even if she isn't up 5-10 times during the night, you are "on-guard" because she is quiet and you don't want her to fall or something. Money from the lawsuit will help us to hire someone to do the over nights and get help during the day. We do have visiting nurses during the day. I have been doing this for 3 years. The first year, when Dad was home and "with it" , I did all 7 nights by myself. I would help them into bed at 10-ish and leave at 3 or 4 in the morning. Over time my Father could not handle my Mother so my Brother and I have been doing the over nights since. It is very tiring and I should probably be home with my Wife as , we have a new lawyer from Boston but I know from prior experience, in dealing with our former lawyershe has a Mental Illness and should not be left alone. Anyway, we have a new lawyer who is now sending my Mother's docs out to specialists. I was asking if anyone knew of specialists who testify due to the anxiety caused by our former lawyer. From day one, he only wanted to go after the primary care physician. I totally disagreed. Then it came down to crunch time and he said WE needed to find an expert. He supposedly couldn't locate any. My Brother and Sister did a Google search and 50 or better popped up. This was on a Friday. I e-mailed a doctor in Texas who seemed good, Mayo Clinic trained and that is where I got most of my research material on the disease. He called me that night, a Friday night!@ I sent him many of my Mother's docs and a time-line. He, without prompting, said "they (both the ER and the Eye specialist), should have started IV Therapy, IMMEDIATELY, before the diagnosis was confirmed." He is animated in his speaking and I am pleased. I give his contact to our former lawyer, who then supposedly has to check the expert out. Then after about 5-6 weeks of waiting the expert supposedly contacts our former lawyer and says, "we can only go after the primary." The former lawyer tells me this and I am dumbfounded. I don't believe one thing the former lawyer is telling me. I spoke to the expert and there was no way he did a complete 180. That is why we have a new lawyer and why I am anxious and not so trusting. I asked the new lawyer if I could reach out to the expert and ask him about the supposed change in philosophy but was told we will do that, if needed, at another time.

Hi @petel, based on my experience with self-advocating and endocrine issues, the first thing I thought of when you mentioned her eyesight loss was a pituitary gland tumor. Many people with a pituitary tumor don't know it until they wake up blind one morning, and this doesn't mean that the loss of sight is permanent. Has she had an MRI yet regarding the eyesight issue?

Self-advocating has unfortunately become a necessary part of America's healthcare journey, and there is a learning curve for success. Keep journals of her symptoms with timelines, appointment history, completed lab and imaging tests, etc. Tracking everything is essential. Also, perform online searches using reliable, respected sources (web sites like Mayo Clinic, Stanford, John's Hopkins, Cleveland Clinic, etc.) There are doctors out there who are okay if you do your own research. Thankfully, my Mayo doctors have been very open to me doing this and it actually enabled us to solve my biggest medical mystery.

I am interested in connecting with other patients that have Giant Cell Arteritis. I was diagnosed in May 2017 at Mayo Clinic.

Hi @tinkerbell and @dawnmarie,

You may notice that I moved your discussion and combined it with this existing discussion on giant cell arteritis (GCA). As Mentor @johnbishop suggested, I did this because we thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the entire discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'd like to invite @crhp194 @morninglory @anya @sallygosse to join this discussion, as well; they may be able to provide some more insights. We have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
I hope @donnalc @lindy @prednisone4gca @MLeeB also return to share their experiences.

@tinkerbell, @dawnmarie, what are your main concerns about your diagnosis?