Mayo Clinic Connect
Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.
Liked by captainkenny
Tinkerbell, I have not been to an internist and the Neurologist that I would like to see is booked thru July 29th….so I may have to find another with a sooner appointment time. It seems like you lose a lot of valuable time just trying to get to see a specialist these days.
I think that I need a written referral for the type of eye exam (neuro eye exam) that is needed in this instance and still so mad at that RA Specialist forgot cooperating dismissing that and saying I could just go on my own for a routine eye exam….this is not routine….a special RX has to be written in order for the Eye Specialist to know what it is all about. One thing that I am seeing first hand is that when you become really ill, it is like jumping through hopes to get anything accomplished. I feel like calling Medicare and reporting him for incompetency and I still may do that!
So far, the ER did the best job of getting the blood work (almost 40 tests) and at least vitals, etc. done in a timely manner. My Sjogren's Syndrome A Blood Work came up very high, at 3.2 over the recommended highest rate of .0.9 and nothing about that was even mentioned yesterday and I also got a POSITIVE for my Antinuclear Antibodies Screening blood work. These three panels all came in high and should be flags to any competent physician.
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Sorry to hear that you are experiencing so much pain….I think in this day and age you just have to be grateful to wake up in the morning and know that you are alive for another day. Yes, things have changed dramatically in the medical field, it is now considered more of a business than an aid in health and humanity. Doctors and good ones are bought out by hospitals, meaning that they are owned by them and they have to bring a certain amount of revenue in since the hospital pays for all of their overhead, medical insurance, nurses, medical asst., physician assistants, clerical staff and billing as well as office space….In my opinion they have sold themselves out to devil. Many of them who were in private practice before don't last long and opt for an earlier retirement since the transition to to a do-as I say environment becomes too much for them. Also, I have noticed when they transition into ownership by a hospital, some hospitals associations don't provide well trained staff on all levels….It's got to be hard for doctors to work with what they give them…they have no more say in the quality of what's provided for them!
@charann2000 – I see my optometrist every 6 months since the GCA started. She does a great exam and has the equipment to do more than the Neurologist was able to do. My optometrist told me that she has diagnosed people with GCA. It may make sense to schedule an appointment with your eye doctor. I know how frustrated you are since I went through the same thing. You get to the point that you don’t know where to turn next. We are lucky that we live 2 hours from Mayo and were able to go through their emergency room. I wish there was something I could do for you.
Liked by charann2000, captainkenny
Yes, you are very fortunate to live within driving distance of a Mayo Clinic. I am going to be speaking with my Eye, Ears, Nose Throat Specialist who was the first one to pick up on the possibility of Temporal Arteritis and see if he can write an Rx for an Neurological Eye Exam so that it can be covered by Medicare instead of a routine eye exam. Yes, I have become frustrated but am very grateful that I have been in communications with you and several others on this Board. I am trying to just deal every day as it unfolds now and calm myself down as it seems to aggravate the condition with stress and worry. I am confident that I will get to the bottom of this within the next few weeks, but it seems like it could be an easier process from my view point. Also, I plan on staying within the Aurora Network as it appears to work more efficiently with internal communications and accountability than the other major health organizations we have here in Milwaukee. As we get older, we don't need nor want more aggravations. Have a great Mother's Day!
Liked by Kanaaz Pereira, Connect Moderator, captainkenny
@charann2000 – The optometrist can code it with GCA and Medicare will cover the eye exam. I am not paying for any of my visits. Just tell them when you call in that the ENT has told you that you have GCA and you need an eye exam. I think that makes sense to stay with the Aurora Network. Have a nice Mother’s Day. You are right that stress just makes the GCA worse. The key to any visits to any doctor is the code.
Liked by charann2000
After my GCA diagnosis, I was referred to an ophthalmologist and got the most thorough 2 hour eye exam I have ever had. Every six months I get a shorter exam to monitor any changes. I am satisfied with my current care, and even though I live a short drive to Mayo Clinic, I will give the Methotrexate, my Rheumatologist recently prescribed, some time to resolve my rash/itch until calling Mayo for an appointment.
Oregongirl, Don’t give up the ship yet. The majority of medical practitioners are highly trained and qualified and are called to their work because they care and want to be of service. Like any profession, there are a few rotten apples that sully the batch. I know from experience my mental & spiritual condition helps me accept my situation and maintain a positive attitude in spite of what some see negatively.
Liked by John, Volunteer Mentor, charann2000
@captainkenny – Thanks for the input on the eye exam. I agree that it is the most thorough exam that I have ever had. I have never been on Methotrexate and so I really don’t have any input on the medication. I hope it resolves your rash/itch. We really just have to go with what the doctors prescribe and hope the medication does its job. Do you live near the Mayo in Jacksonville or Minnesota?
@captainkenny – Do they have any idea on what is causing the rash? I think it is very interesting to see how the GCA patients end up being diagnosed by a variety of specialists. I asked at Mayo why the GCA patients end up in different departments and they said it just depends on who diagnosed the condition.
I was lucky my doctor diagnosed GCA at my first appointment, then referred me to a dermatologist, after itchy rash appeared five months later, to determine its cause—allergy to my meds or GCA related? After he treated me for 2-3 months with several trial meds, more blood lab work and two biopsies on both hips, he concluded it might be part of my GCA, but wasn’t conclusive. Presently still on two anti histames meds—over the counter, Zyrtec and Rx Hydroxyzine, which partially relieve the itch. Recently started seeing a rheumatologist who didn’t think it was related to GCA and prescribed trial Methotrexate in addition to my present 10 mg of Prednisone to see if it would resolve. I’m not complaining; lots of you have it so much wose than I do. I am also grateful for my early diagnosis, subsequent treatment, and for the medical professionals working like detectives to locate the culprit. And I’m hopeful for a positive prognosis.
We are an easy 1-1/2 hr drive from Rochester, MN.
@charann2000 – When you call in to make the appointment ask them if it will be covered by Medicare. If they say know then, I would get the referral from your ENT. Since you are not getting any place with any of the other doctors, maybe he can make another referral. My emergency room visit said my condition was life threatening.
@captainkenny – They see a lot more GCA in Minnesota because of the Scandinavian population in that part of the country. I hope the medicine you are on helps with the rash and itching.
@captainkenny – I feel the same way that I was lucky to be diagnosed after one month. Lots of frustration before the diagnosis but lucky I did not go blind. I can’t wait to get off of the Prednisone but continue my slow tapering. The only problem I have had is with my Rosacia. My dermatologist told me it would get worse as I taper down and she has been right. I use my Metro gel twice a day on my face trying to control it. Some small problems but so far I am doing okay. It will be interesting to get the results of the ACTH Stimulation Test which will be done on 22 May 2018. I hope to have the results the same day. Mayo is great about getting the results to the patients the same day they are done. When you had the biopsy was it only done on one side? I only had to have the right side done. They did not knock we out – just a local by the ear. We waited about 15 minutes in the operating room for the call and it was positive. I was happy they did not have to cut the other side.
My rash was resolved with use of Mometasone Furoate USP. Cream lightly used. Keep it controlled. I had my rash for at least 4 yrs or more. This cream got it
But due to eye on left I now need glasses. Three pairs.. 1 for sun glasses no bigocal as I use a cane and must be able to see concrete. Regular glasses same scrip for when no sun. Then bigocal for reading. R A has destroyed my in plants. I Pray I can get ins to pay for glasses.
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