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GCA Relapse

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Lee-Colorado
Lee-Colorado

Hello, I just suffered a GCA relapse only this time it affected my left eye instead of my right eye. I had previously downlined an article called "BSR and BHPR Guidelines for the management of giant cell arteritis" and I have posted the relapse extracts below. In the past five weeks I had dropped from 20 mg to 17.5 mg and three weeks later I dropped another 2.5 mg. My rhumatoligist follows the taper guidelines posted in the document listed above. When I dropped to 17.5 mg I had headaches and had a CRP test performed, the reading was in normal guidelines. After dropping from 17.5 to 15 I had temple aches but no other symptoms. On Monday the 28, I visited my ruhmatologist on a normally scheduled visit and had the a blood test and CRP performed. I noticed on a business trip at 10.5k ft. altitude that my heart was beating 100 BPM. On 5/3 I temporarily lost vision in my right eye while in Atlanta, GA. and following the relapse recommendations I went to 60 mg and I am rapidly tapering down to 20.

Looking at relapse recommendations, I should probably have stayed at 20 mg when I had headaches but I do follow Doctor's orders. Why am I blogging this? I. Would like to see if anyone has had a similar experience and what their Dr.'s recommendation was when this happened.

Relapse Recommendations:

BSR and BHPR Guidelines for the management of giant cell arteritis: treat with the previous higher glucocorti- costeroid dosage.

Headache and jaw claudication: treat with 60mg prednisolone.

Eye symptoms: treat with either 60 mg prednisolone or i.v. methylprednisolone

>>>>>>>>>>>> diary >>>>>>>>>>>>>>>

Flew to Atlanta - still slight temple ache from drop tp 15 mg prednisone - Glass of white wine in the evening.

5/3/2014

Woke up with blurry vision in left eye - felt like temple and eye was swollen took 15mg of prednisone. Binged on sweets cake, rolls, etc in forenoon at reception.

3 pm - almost total vision loss in left eye - took 30 mg of prednisone

(Did serious physical work that took a lot of concentration - lost vision in left eye for 20 minutes)

11 pm - had slightly constipated bowel movement : lost 15% of vision field in left eye. Took 10 mg prednisone

5/4/2014

7 am Slight vision focus problem - 20 mg of prednisone

1:30 pm vision ok, heart rate on 15mg was 90 BPM now back at standard 64.

3 pm took 20 mg. It takes 1.5 hrs to take effect and my eyes are feeling weak.

Regards

0 likes, 7 replies

7 Replies

  • EileenH
    EileenH Lee-Colorado

    Posted

    The starting dose for GCA should be a minimum of 40mg - if there are already visual symptoms 60mg and if there has already been loss of vision even higher, possibly given iv. It should take about 6 months to reduce to 20mg - and even after that time the most recent research shows there is still inflamamtory activity identifiable and maybe higher for longer is better. You need to be on 60/50/40/30/20 for at least a month for each dose. GCA is not something where you use a rapid taper. Ever. 

    I hope you are under the direct care of a doctor at present who is considering iv pred rather than what I would consider too low oral pred.

     

    • Lee-Colorado
      Lee-Colorado EileenH

      Posted

      Thank You, I contacted the Dr. and he is not on call this weekend. The clinic stated that I should goto the emergency room in GA where I am working/ wisiting. I have kicked the dose back up to 60 mg oral until I can talk to my ruhmatologist tomorrow. Things seem to be holding OK and I will not drop to 40 without the Dr.'s approval. It did take me 6 months to get to 15 mg from 60mg. I HATE steroids but they beat the alternative. My symptoms when I loose site with GCA are the same as I posted earlier, without the multi colored spots. I believe in my last description I described the field of vision as white. This time it was more cream to grey.
    • EileenH
      EileenH Lee-Colorado

      Posted

      If anyone has the symptoms of GCA they need to see a doctor in hours - and if they have a previous history of GCA it is even more important. 

      In the UK almost everyone who has had GCA is told to carry enough pred with them when away from home to take 60mg immediately to give them time to get to a doctor. If their own doctor isn't available they are told to go to the ER. One optician I know of in the UK saw a patient with symptoms but decided to wait until the next day to refer them - it was too late, they had permanent loss of vision. It doesn't happen to everyone of course but the possibility is always there.

      Once vision has gone in one eye it is more likely there will be problems with the other whatever dose of pred is used - hence the need for it to be treated as a medical emergency. You wouldn't wait days to see your own doctor if it were a stroke or a heart attack - it's the same physiological process.

      After 6 months you still need to be at the "high steroid dose" - 20mg and above. Most of us dislike what steroids do to us - but the alternative is worse.

  • joey2
    joey2 Lee-Colorado

    Posted

    One thing that stuck out to me is that you had been drinking. Please do not drink any alcohol ever again.  In my experience, alcohol brings on the flares of PMR and GCA. You can prove this theory by having one alcoholic drink and see how bad your symptoms appear the next day. Alcohol effects all aspects of your body including the immune system. Since GCA is the inflammation of your arteries, it makes sense not to imbibe since alcohol makes blood vessels expand. I am sure your binge on the sweets may play some part in your misery too. Wish, I knew more biology.  It probably has to do with the beakdown of glucose (a sugar)  stored in our muscles. That is probably why we have such loss of our muscles movement and pain. Drinking leads to low sugar levels in the blood. I believe this all holds the key to solving these awful autoimmune problems.
    • Lee-Colorado
      Lee-Colorado joey2

      Posted

      You are correct about the alcohol and white carbs in the diet. An interesting book by Gary Taubes and is titled "Why We Get Fat". One of the possible side effects of prednisone is weight gain and diabetes. Since I started using the recommendations in the appendix of the book I have been able to maintain my weight, pulse rate and blood pressure.
    • Lee-Colorado
      Lee-Colorado joey2

      Posted

      When you drink, the alcohol sugar that you consume is burned by your body before it burns the glucose in your blood. Your insulin spikes and stores the excess glucose in your fat cells. RTB for detailed information and start at chapter 9 if you are not interested in the history of obesity.
    • EileenH
      EileenH joey2

      Posted

      I feel this is a rather sweeping statement - we are all different. This may be the case for you joey - but I drink alcohol and so do most of my friends who have GCA and PMR and we certainly don't find it makes our symptoms worse and NOT drinking doesn't make it any better (because if it did we wouldn't drink it!). Believe me, most of us have tried drinking/not drinking, eating nightshades/not eating nightshades, gluten/gluten-free, whatever. For 99% of us it makes no significant difference. However, many of us DO find too much processed carb doesn't help - but I eat almost no processed carb and still have PMR problems.

      A point on the biology: we don't store glucose in our muscles, glucose is the breakdown product of the carbs we eat and excess is stored as glycogen in the muscles to be available for breakdown by the hormone glucagon (it does the opposite of insulin) to supply energy when we aren't actively eating carbs. 

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