Share this:

I was diagnosed with temporal arteritis 1/2010.

Posted by Anonymous-febd2536 in Heart & Blood Health, 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?




Tags: Autoimmune diseases

masonc

Posted by @masonc, Aug 19, 2011

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?

spiritedwalker

Posted by @spiritedwalker, Aug 25, 2011

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?

masonc

Posted by @masonc, Aug 25, 2011

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

spiritedwalker

Posted by @spiritedwalker, Aug 25, 2011

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.

masonc

Posted by @masonc, Aug 26, 2011

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.

spiritedwalker

Posted by @spiritedwalker, Aug 29, 2011

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.

masonc

Posted by @masonc, Aug 29, 2011

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.

spiritedwalker

Posted by @spiritedwalker, Sep 13, 2011

My holistic MD sent me for an Aic test and a sed rate. My sed rate is down to 10 from 50 and I have four more days on 25 mg of Predisone and then go to 20 for 15 days and 15mg for 21 days and so on. My Aic is 6 points above normal, a result of the predisone elevating my blood sugar, I believe, thus the tingling in hands and feet. She gave me supplements of Lipoic Acid Supreme, Carnosine Supreme, GLA 240 Linolenic Acid and a Vitimin B Supreme. The supplements seem to help these symptoms. How are you doing? I am of course concerned about what happens to the arteritius as I go down on the predisone. Does it go away? Does it come back? have you had any complications with your eyes?

dorisgieselman

Posted by @dorisgieselman, Aug 29, 2011

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

klkraines

Posted by @klkraines, Aug 19, 2011

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!

spiritedwalker

Posted by @spiritedwalker, Aug 25, 2011

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

klkraines

Posted by @klkraines, Aug 25, 2011

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.

spiritedwalker

Posted by @spiritedwalker, Aug 25, 2011

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

sissie35

Posted by @sissie35, Sep 30, 2011

I was diagnosed with TA/GCA on April 22, 2011. My sed rate was 50 on that day. My symptoms surfaced only 2 days earlier. I was very fortunate to be diagnosed so quickly and started on the appropriate treatment of Prednisone. Diagnosis was also verified by biopsy,
My symptoms disappeared quickly and my sed rate returned to normal by June and has remained there ever since, not changing as the pred has been tapered. Tomorrow, I will be down to 7 1/2 mg. daily. This for 2 weeks and, if no untoward effects down to 5 mgm. My family practioner has been treating me. I did see a rheumatologist a week ago. She agreed with the treatment so far, but was concerned about the degree of weakness in my legs. Hiking would not be an option for me at this time. I think both doctors believe the prednisone is hurting more than it is helping at this time. I expect/hope, of course, to be off the pred by the first of 2012. I know of one patient who is on Methotrexate and expects to stay on it for life. She, like many, had trouble getting the right diagnosis and did have damage to her eyes. Follow-up treatment after getting off the pred has not been mentioned to me by either doctor. I'm trusting my very quick diagnosis and treatment initiation to work in my favor.
The side effect of the prednisone have been very difficult. Sleeplesses was a problem until i started taking ambien, but I do not have to have it all the time on the lower doses of pred. But the weakness, fatigue, and shakiness continue to be a bad problem. I get up shaking pretty badly. This lasts until late afternoon. My evenings are much better. When walking, other than just around the house where I can reach something for support, I have to use a cane to last for 10 minutes. I try to do that at least three times a day.

I'm so glad to find these replies about other people's experiences. I am a nurse and 76 years old. I've always been healthy and this length of down time has been difficult for me. But I'm told, "this, too, will pass." I'm depending on that.
Good luck to all of you.
Jan

spiritedwalker

Posted by @spiritedwalker, Oct 4, 2011

Hi wondering how you are doing. When coming down from 35mg to 30mg to 25mg to 20mg with each for 15 days. I am experiencing slightly some of the symptoms you mentioned when coming down from 15mg to 12 and1/2. I feel like I am relapsing. I will send a link to your information to my doctor's. I am thankful for you sharing your journey. I am feeling discouraged as I had been doing so well although cataracts advancing and blood sugar elevated. An integrative doctor wants to give me adrenal support. Wondering if that would help the adrenals not get so mixed up. As always thank you. Do you correspond with anyone else on here? I am not so computer savvy so don't know my way around too much. I read all the article in your bibliography but could not get connected with a support group on your list.

spiritedwalker

Posted by @spiritedwalker, Oct 5, 2011

I think my flue like symptoms were from the withdrawal. I don't believe my doctor understands. I am sending your link about your journey to them. Anyway I am so computer illiterate. I went to the Yahoo site and followed the instructions for setting up an account and it just won't let me in. I know you have better things to do but are there any simple instructions for doing this? I gave my e-mail address and a username and a password and followed all the prompts to set up a yahoo account. And I can't get in. And if this is a pain for you I will try to get some help from someone as I believe it is so important. Many thanks.

Please login or become a member to post a comment.