I was diagnosed with temporal arteritis 1/2010.

Posted by doris gieselman @dorisgieselman, Aug 8, 2011

I have not heard of anyone with temporal arteritis ever getting off prednisone and methotrexate. I’ve been off prednisone since 1/2011 and I’m still taking 7.5 mgs. once a week. My SED rate and RCP numbers are still above normal.

Will they go back to normal? Is this what usually happens when withdrawing from prednisone?




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Diagnosed GCA March 2009. Now at 5mg. Details may be seen at
http://frontal-lobe.info/gca/gca.html Withdawal comments at
http://frontal-lobe.info/gca/gca2.html What do you mean by “above normal” ? Your normal or your doctor’s normal? Everyone is different. Comments anyone?

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My mother has had temporal arteritis for many years (15 yrs.), she is now down to just a couple of mg of prednisone and just came off the methotrexate and seems to be quite stable. So yes, there is hope but it can be a long journey of tweaking, monitoring and adjusting and of course there is always the concern of it flaring. I would think your SED and RCP numbers still being above normal would be something that your physician is carefully monitoring. This can be a long journey so hang in there!

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@klkraines

My mother has had temporal arteritis for many years (15 yrs.), she is now down to just a couple of mg of prednisone and just came off the methotrexate and seems to be quite stable. So yes, there is hope but it can be a long journey of tweaking, monitoring and adjusting and of course there is always the concern of it flaring. I would think your SED and RCP numbers still being above normal would be something that your physician is carefully monitoring. This can be a long journey so hang in there!

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Thank you. Has she tried any alternative therapies? Anything to help prevent side effects of Prednisone?

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@masonc

Diagnosed GCA March 2009. Now at 5mg. Details may be seen at
http://frontal-lobe.info/gca/gca.html Withdawal comments at
http://frontal-lobe.info/gca/gca2.html What do you mean by “above normal” ? Your normal or your doctor’s normal? Everyone is different. Comments anyone?

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Your information has been most helpful to me. Did you take any alternative supplements or treatments to help counteract side effect of prednisone? Did the hiuking help?

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@masonc

Diagnosed GCA March 2009. Now at 5mg. Details may be seen at
http://frontal-lobe.info/gca/gca.html Withdawal comments at
http://frontal-lobe.info/gca/gca2.html What do you mean by “above normal” ? Your normal or your doctor’s normal? Everyone is different. Comments anyone?

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The customary supplements are calcium, vitamin D and small aspirin.
Also a stomach protector and a bone protector — I refused both of those.
I do not have stomach problems such as heart-burn and my bones are built
on Wisconsin cheese and exercise and have the density of a 55-60 year old. I’m 90.

I have strong feelings against doubtful drugs. (including sleeping pills)

Exercise, such as hiking, is necessary for good health and is not special to GCA..

I strongly recommend the Iowa paper mentioned on my web site:
http://frontal-lobe.info/gca/gca.html and new: frontal-lobe.info/gca/gca2.html

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@masonc

Diagnosed GCA March 2009. Now at 5mg. Details may be seen at
http://frontal-lobe.info/gca/gca.html Withdawal comments at
http://frontal-lobe.info/gca/gca2.html What do you mean by “above normal” ? Your normal or your doctor’s normal? Everyone is different. Comments anyone?

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I cannot thank you enough. I am 71 am an avid walker. I have never taken drugs and I too against doubtful ones. My sed rate was 50 in June 2011 and I know I have to take the prednisone. The biopsy showed it in both temples. I have been obsessing about the side effects. Your article was so helpful and I see I have dry cough and vibrations on bottom of my feet and itching and burning in left hand and tingling in my right arm. I am taking extra calcium and vitamin D. The rheumatologist prescribed 40 Mg of Omeprazole and I have not taken it as the script lists so many side effects. He tells me in six months I will have an ulcer. He will also prescribe a bone drug down the road as well. I started at 60 mg of prednisone and am now down to 30mg for 15 days and then 25mg for 15 days and 20mg for 15 days and 15mg for 21 days and that is as far as I know. I live in Warminster PA and I have found an integrative doctor in Plymouth Meeting PA and am hoping to find some advice about how to counteract the nasty side effects. I was interested in what happens to the cortisol levels in your body and also your comment about the disease is just hiding under the predisone and waiting to flare. Do you have any thoughts about why you contracted this diagnosis as you seem to have a healthy lifestyle.? I have always reacted to life’s stressrs with high levels of anxiety. I am trying not to beat myself up for why did this happen. Thanks so much for listening. My dad lived until 95 and my mom until 94 and I thought I was good to go. Your words of wisdom are important to me.

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@klkraines

My mother has had temporal arteritis for many years (15 yrs.), she is now down to just a couple of mg of prednisone and just came off the methotrexate and seems to be quite stable. So yes, there is hope but it can be a long journey of tweaking, monitoring and adjusting and of course there is always the concern of it flaring. I would think your SED and RCP numbers still being above normal would be something that your physician is carefully monitoring. This can be a long journey so hang in there!

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No she didn’t try anything alternative therapies but she tried to remain active and watched her diet carefully to try to battle some of the weight gain.

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@klkraines

My mother has had temporal arteritis for many years (15 yrs.), she is now down to just a couple of mg of prednisone and just came off the methotrexate and seems to be quite stable. So yes, there is hope but it can be a long journey of tweaking, monitoring and adjusting and of course there is always the concern of it flaring. I would think your SED and RCP numbers still being above normal would be something that your physician is carefully monitoring. This can be a long journey so hang in there!

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Thanks again. No one had mentioned methotrexate to me. What is that for?

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@masonc

Diagnosed GCA March 2009. Now at 5mg. Details may be seen at
http://frontal-lobe.info/gca/gca.html Withdawal comments at
http://frontal-lobe.info/gca/gca2.html What do you mean by “above normal” ? Your normal or your doctor’s normal? Everyone is different. Comments anyone?

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I know little about the “nasty side effects” of prednisone except the problem of too-quick withdrawal. That put me in the hospital at the drop from 15 to 12 1/2 but that was easily repaired. I wouldn’t count on having an ulcer in six months. You know more about your stomach acid than the doctor does — but be aware of it. A bone density test is a good idea — so you know where you stand (no pun intended). Walking hills might strengthen bones more than Fosamax does — my opinion.
No one knows why some persons get GCA or PMR. With your genes you should plan your finances to last to age 105 at least. All that said, please remember that I am not a doctor — just a GCA patient who reads. Work with your doctors. You have many good years ahead.

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@masonc

Diagnosed GCA March 2009. Now at 5mg. Details may be seen at
http://frontal-lobe.info/gca/gca.html Withdawal comments at
http://frontal-lobe.info/gca/gca2.html What do you mean by “above normal” ? Your normal or your doctor’s normal? Everyone is different. Comments anyone?

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Once again thank you for responding to me. I too am trying to research and read. I am sometimes computerly challenged as I try to navigate my way around the sites .Sometime the information over whelms me and causes me to worry and then I stop looking. I was wondering if you ever experienced tingling and slight numbness in fingers or toes during the course of your treatment. I have had it for about a month and it is becoming more prevalent. And I always remember that you are not a doctor. Will call my doctor in the AM. It is just helpful to communicate with another person who has been down the path of this particular diagnosis.

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@masonc

Diagnosed GCA March 2009. Now at 5mg. Details may be seen at
http://frontal-lobe.info/gca/gca.html Withdawal comments at
http://frontal-lobe.info/gca/gca2.html What do you mean by “above normal” ? Your normal or your doctor’s normal? Everyone is different. Comments anyone?

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No, I have not experienced tingling or numbness. I’m sorry I can be of no help on this. Let us know what your doctor says.

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@masonc

Diagnosed GCA March 2009. Now at 5mg. Details may be seen at
http://frontal-lobe.info/gca/gca.html Withdawal comments at
http://frontal-lobe.info/gca/gca2.html What do you mean by “above normal” ? Your normal or your doctor’s normal? Everyone is different. Comments anyone?

Jump to this post

I had experienced quit a bit of tingling and numbness in my fingers and toes. It has gone away. I’m not sure why. I did think it may have been related to larger doses of prednisone.
dorisg

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