GCA patient, with tapering issues after 4 years

[weatherman69]

Hi, my name is Mac, I have GCA since diagnosis June 2016. I am currently trying to taper down , but just had a flareup! I was at 10mg am/8mgpm predisone daily, but had to go up to 15mgam/10mgpm due to flareup. I have been getting more mobile, and pushing it too much after recovering from 3 compression fractures and kyphoplasties to fix them. I went out on a very hot day for 3 hours, and then stayed up in wheelchair additional 6 hours. Unfortunately the flareup was very painful!! but we acted quickly and have learned that quicker we act the quicker I will respond. My wife, Charlie and I are excited to be on this forum and find out from those of you that have GCA, what worked on tapering.

[SheffieldJane]

Welcome Mac and Charlie. Acting fast to contain a flare is definitely key. I am having some success with a drug called Tocilizumab that is supporting me in reducing and hopefully ultimately getting off steroids in a shorter time.

[weatherman69 in reply to SheffieldJane]

yes, I am on Actemra 162.5mg shot biweekly, it helped me to get to 10mg about 1 1/2 years ago, but I quit it, because it was a painful shot. I found out that it really was beneficial and I am back on it now and tapering is easy, but going down 1mg every 2 weeks under 18 mg is not working for us. So after reading here about the slow slow taper and all I have been through in the past 2 years, I really think, I will try the new dose 1 day, old dose 6 days, and then 2 days new dose, 5 days old dose and so on......... I have been as low as 10mg a day, but one stressful event did me in, and then I went off Actemra for 9 months that really set me back. Thanks for any input you have!! do you take shots or iv

[SheffieldJane in reply to weatherman69]

Self administered, subcutaneous shots, weekly. Always at room temperature or they sting. Reached 10 mgs from 40 mgs Pred in about 13 weeks. I sense the next bit will be harder ( PMR/GCA).

[PMRpro Ambassador in reply to weatherman69]

Only about half of patients get off pred altogether with Actemra/tocilizumab - because there are 2 possible underlying causes of inflammation in GCA that are nothing to do with the IL-6 cytokine and so are not stopped by Actemra. So you may need SOME pred. Of that number, in the clinical trials again about half of the patients who achieved remission and no pred maintained that for a year without Actemra. So it's pretty good but not perfect and it may need to be used long term.

[SnazzyD]

Welcome! Are you sure it was a flare and not just delayed onset muscle stiffness? 6 extra hours of any activity we aren’t used to is capable of making one feel stiff as a board. I haven’t been GCA symptomatic for 3.5 years but a long car drive will almost certainly bring on neck stiffness and head pain. Of course you know you’re own body, but I was just throwing it out there.

I reduced by 0.5mg steps from 10mg very 6-8 weeks by gradually adding in the new dose.

[weatherman69 in reply to SnazzyD]

Yes, very sure, horrible headache,scratchy eyes like sand feeling, insomnia, increase pain, especially in legs and back, and more. My usual, but we stopped it by giving 10mg extra, my symptoms are horrible if not addressed right away. Thanks for asking. My biggest learning curve, is to alert my wife, so we can do what is necessary.

[DorsetLady PMRGCAuk volunteer]

Hi Mac,

The simple answer - slowly without adding in any additional drugs as described by SJane -

It took me longer to reduce from 10 to zero than it did from 80mg to 10.

part 2014

12mg - 10 weeks (slow taper from now on)

10mg - 3 weeks

9mg - 6 weeks

8mg - 6 weeks

7mg - 6 weeks

6.5mg - 6 weeks

6mg - 12 weeks (visit to NZ)

2015

5.5mg - 6 weeks

5mg - 8 weeks

4.5mg - 6 weeks

4mg - 10 weeks (unexplained neck/back pain)

3.5mg - 5 weeks

3mg - 9 weeks (back pain)

2.5mg - 6 weeks

part2016

2mg - 5 weeks

1.5mg - 6 weeks

1mg - 4 weeks

0.5mg - 16 weeks (couple of false starts, plus holiday)

Zero.

As you can see, if I had an issue - unusually relating to osteoarthritis or lumbar spondylitis (discovered later) I held off tapering.

Been in remission and off Pred for 4 years.

[TheMoaningViolet in reply to DorsetLady]

Hi, I was just wondering, do your numbers include the tapering period or just the weeks you stayed on a particular dose?

[DorsetLady PMRGCAuk volunteer in reply to TheMoaningViolet]

From 8mg down it includes the tapering period. So most periods from current dose to completely new dose was about 6 weeks, 4-5 weeks on my slow taper plus one complete week on new lower dose.

On the ones where it was longer, like trip to NZ, I completed the taper from 6.5 to 6mg whilst away but then decided to stay at 6mg until I returned before I tried the drop to 5.5mg.

As you can see the last taper was a bit of a stuttering affair!

Plus all the way through the lower doses I was under care of GP who left me to do things as I want, and didn't harass to "get off the steroids" - and in that I know I was lucky.

[Hidden]

Welcome from another relatively new member. You may have as much to share as what you will learn

[weatherman69]

thank you so much!! we are already have new found hope from this site!! The doctors here say, I am the only patient on island with GCA diagnosis, and we no longer have a rheumatologist and cannot go off island because of Covid. We have amazing radiologist here, that would do teleconference with Rheumatologist, and Internal med doc if I can get the original Rheumatologist to take back my case. The Radiologist doctor is from Iceland, and honestly the most informed person that understands GCA, we have met. My wife and the Dr. talked nonstop for a hour..........way over my head, but enlightening. So finding the group is amazing for both of us. Our Internal Med doctor retired and we have a new one for 1 1/2 years, he tries, but other then doing labs biweekly and discussing teleconference now (since Covid) we are winging support. We have gotten me down to 15mg a couple of times and down to 10mg x1, 11x1 for awhile, followed by flareups that were bad. However, we have been able to keep me out of the hospital since 12/2018. Now with the tapering systems we see here, is what we have needed and knowing that there is HOPE , we have renewed spirit to do this!! Also waking up the adrenals!! I have to take insulin too, prior I was diet controlled diabetic. My wife is specialized in Diabetes, and that has been a huge plus. Thanks again!! anything you can help us with, will be amazing I am sure. Also, how do you feel about taking the Covid flushot when it comes out. My wife, tells me, I cannot take because, I am on ACtemra. Do you have any information.

[SheffieldJane]

I am booked in for the flu shot in a few days. I have been advised to with a compromised immune system. Do you mean seasonal flu ? The unreleased Covid vaccine is a bit of an unknown quantity.

Live vaccines are to be avoided.

[weatherman69 in reply to SheffieldJane]

Charlie here, Mac's wife. I have been telling Mac, he should not take the Covid shot when it comes out. We were warned against live vaccines, and as a RN, I am very reserved as far as this is concerned. Mac is presently on Predisone, recent flare up to 25mg to stop flare, and he is taking Actemra 162.5 mg SubQ, biweekly. He has been through the ringer the past 4 years. He is anxious to get back to our life aboard our yacht. We had to get off our yacht, when he suffered 3 compression fractures as a result of osteoporosis most likely caused by steroids since 2016. He is getting physical therapy and walking with a walker, but we have found, excess exercise and heat in the tropics can cause a flare up, which is the case for this flare up. We have found in trial and error over the past 4 years, if pain and symptoms are coming on, depending on intensity, we give a 10mg dose extra of predisone. If it is GCA and it has always been then the symptoms abate, and then we taper, and he takes rest days. We are finding his activity ranges, and now know he cannot push it!! 2 times now in the past month he really pushed hard, because we want to go home to our yacht!! Anywho, we just need to be patient!! and finding the tapering system by Dorsetlady, I am sure we will be more successful. I just have do my best to keep him, from over doing exercise and stressing his body out. He was a very strong man and he is the kind of man that likes to go from 0 to 100....... I believe he is accepting of this now, and should be more successful with tapering. He has been under 20mg many times, and even down to 10mg a couple of times. Always, a stressful event and over exertion, procedures have set him back. We also, were in the mode to lower despite what was happening. If the labs were excellent, why not!! well we have learned in the past couple of months despite a CRP below 5 or undetectable and a ESR 28. a over exertion and stressful event can push him into a massive flareup!! He actually had one such event where his CRP went to 200 and ESR 140s. He absolutlely was as sick has he was on the event of diagnosis. We caught it, and was able to turn him around, but it was scary as hell! He has involvement of right carotid artery from GCA, the giant cells apparently congregate there more, my understanding and his headaches are horrible. He will have chest pain, that results in no elevation of cardiac enzymes and more. muscle weakness, painful to touch, inability to sleep , jaw claudication and more. Even to the point he breathes shallow and 02 sats go down in 80s. We actually have since his Kyphoplasties, oxygen if we need it at the house. He has sleep apnea as well. It has been the biggest challenge of my nursing career to learn how to help him, but now after 4 years of trial and error and finding this site, I believe we can learn more and be more successful. We absolutely, learned one thing not to go all the way back up to 60 or 70mg because a doctor unfamiliar with GCA, wants that...... the good Rheumatologist we had recommended to go back up to where symptoms disappear and maintain there and stabilize and then taper. Our failure has been to keep on tapering down on a timely basis, and not taking in consideration, Mac;s activity increases and stress of exercise, heat of the tropics etc....... we are learning, and I believe we will be more successful now. Thanks for whoever reads my epic!! any advice is appreciated.

[SheffieldJane in reply to weatherman69]

Thanks for the useful, recognisable detail. I think you are doing a grand job between you. I am glad that the wealth of experience here is adding value. Has he had a scan of his Aorta? I have a second one coming up, the first showed normal functioning. However, a pulsing pain at the base of my spine may point to GCA/LVV in the abdominal artery.

[Bcol]

Had my flu shot yesterday as usual. As far as I know there is no Covid vaccine yet and as SJ says no live vaccines.

[weatherman69 in reply to Bcol]

I just wanted to know if any of you have any feelings or knowledge about when the covid vaccine comes out if a autoimmune person should take?? I feel they should not.... coronavirsus are totally different then other virus of the past since it originates from a different species of animal then we have been exposed to over years.

[Bcol in reply to weatherman69]

I'm not even thinking about that at the moment. I'll make decisions about the vaccine, if it ever appears as and when it does and I am convinced that it has been properly trialed and tested.

[Grammy80]

This is a very soft place to land, Mac. I have GCA and presently am taking 12 mg of prednisolone plus weekly injections of Actemra. In January I am going to try to taper again! It seems that each time I get to 8...there is an issue. Many of us here walk hand in hand because we have each other and the support of our families. Welcome...💖

[weatherman69 in reply to Grammy80]

I am finding comfort with the slow slow taper of DL suggested, it is working, and I believe fooling your body with doing 5 week taper or more is amazing!! it makes so much sense. Also DL even though she is off now, she had periods of staying the same for long periods of time. Even decreasing by 1/2mg at a time over a 5 week period will make most more successful. Now our bodies with adrenals that work, produce 5mg of steroids. This is why it is so important to go slow and have a endrinologist to follow and do the adrenal gland testing!! as the adrenals are trying to wake up!! around the 10mg or lower dosage will be more challenging, so slower is better. The roller coaster of being tired in the afternoons will increase, so be kind and give your self some GRACE, and REST. Even a 15 or 30 minute nap can rejuvenate you. Slow and steady will get you to the finish..... one thing about this disease it teaches patience!!! God Bless

[Grammy80 in reply to weatherman69]

My best to you!!