New to temporal arteritis

[Libertylane]

I am new. Looks like Temporal arteritis for me. Does anyone have good recovery stories from this? I need encouragement

[PMRpro Ambassador]

Hi and welcome.

I know several people who have had GCA (the more accurate and modern name) and have recovered and have been off pred for some years without a relapse. There aren't very many here on the forum because most of them go away and get on with life.

However, just for a start there is DorsetLady and also jinasc still around at present.

[DorsetLady PMRGCAuk volunteer]

Hi, and we,come,

As a recovered GCAer I can assure you should have a good recovery - so please take a bit of encouragement from these posts - plus, if you feel up to it, also have a look through my profile -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Please come back with any specific questions!

Also have a look at this - page 10

pmrgca.co.uk/download.php?f...

[SnazzyD]

It’s very overwhelming at the start with new territory and high dose Pred. It does get better. Do ask anything here or have a moan, it is a great resource and people here have been through it.

[Libertylane]

Thanks for the replies. I worry about diabetes fluid retention and glaucoma from the prednisone. Already got bigger cataracts from spinal steroid injections for spinal stenosis before I knew I had G CA. Guess the spinal fusion will wait for awhile.

[PMRpro Ambassador in reply to Libertylane]

Cataracts are easily dealt with and once they are there, they don't go away. OTOH, watching your diet and restricting both carbohydrates and salt helps weight gain and fluid retention. I haven;t been on really high doses - but my occular pressures haven't budged - they either do or they don't according to the ophthalmologist here and there is a new procedure that can be used instead of eye drops (and will save the NHS a fortune) and can also be done as part of the cataract op.

[SnazzyD in reply to Libertylane]

I went on an ultra low salt and carbohydrate diet from the start and did not put on weight and my three monthly eye pressure readings barely moved. Diabetes never came on the radar.

[Libertylane in reply to SnazzyD]

Thanks for the reply. What are your go to foods for low salt and carbs?

[PMRCanada in reply to Libertylane]

I have followed a low carb/sugar/salt eating plan for 1.5 years. My daughter, a nutritionist, helped create simple meal plans that included enough variety to keep me following the plan. I did not cut out any major food group and I do consume healthy full fats such as olive and avocado oil, butter, coconut oil, Greek yogurt and sour cream.

For breakfast I have full fat plain Greek yogurt with homemade berry compote or I have veg omelette. Lunch is usually a salad, sometimes with protein and an orange for dessert. Supper is a protein with veg, I quite like my spiralizer used to make zucchini “noodles”. If I’m really hungry I’ll grill steak and veg (mushroom, peppers, onions, zucchini) and I find it very satiating. Snacks include nuts, or “piggy puffs” (fried pork rinds) that are crunchy and delicious but no carbs (instead of potato chips/crisps). I do snack on fruit but recognize the sugar intake in doing so. There is also a woman’s vitality mix of nuts seeds, dried fruit and dark chocolate that is really high in calcium.

On vacation and special occasions I eat what I like and then get back to my healthy lifestyle. I’ve lost 32 pounds and no longer take medication for high blood pressure. Thus far no diabetes. I also try to do deep water exercises at least twice a week.

This works for me. Just suggestions though as each person needs to experiment and discover how best they can adjust their diet to meet their needs. Most craved foods can be substituted with an alternative that is a healthier option. Whatever it takes to stick with it long term. I like to cook, but lots of folks prefer simple meal plans with few ingredients.

Wishing you all the best as you tackle dietary changes.

[Muffin2019 in reply to PMRCanada]

You are making me hungry, encouraging to see s success story.

[SnazzyD in reply to Libertylane]

Anything that once lived that hasn’t gone via a factory. I increased my protein so meals were just loads of veg and protein with a good amount of oils like olive oil. Lots of nuts and seeds. There are carbs in some veg and fruit so I went easy on them but had unripe banana to keep up my potassium because Pred makes you lose it more. I have been gluten and mostly dairy free for years. My treat was two squares of 80% dark choc a day and 2 glasses of wine a week.

[Poppylop in reply to Libertylane]

Hi Libertylane, I love carbs especially pasta and rice so I found it quite hard cutting them out until I discovered skinny pasta and rice from holland and barrett, it has zero carbs and is very low in calories, it takes a bit of getting used to because it has no taste and has a funny texture, it also smells like fish when you open the packet but once you've rinced it a few times and cooked it the smell goes and when it's covered in pasta sauce it's fine, I've also been getting low carb bread from morrisons which is really nice, I've been very very bad over Christmas with my eating so need to get back on track next week

[Grammy80]

Welcome...I'm new to GCA too.....since August 2019. So glad you are here....I was just floating around untethered and feeling alone, not even knowing what questions to ask only knowing I was anxious. These folks are great....I can offer what I have received here...answers, people who walk the walk with me and support. I 'live' a little more each day now...I used to wake and just think about when I would fall asleep that night.....so happy you are here.

[Libertylane]

Thanks you too

[Grammy80]

I'm a newbie too.....but I see that PMRpro and DorsetLady have all reached out.

I was just diagnosed in August of this year and was at wits end until I found this forum. These folks are the best. I've learned so much but ....have received so much encourgement and AM NOT walking alone. You will see that when you are down...you will go up. These folks are showing how to keep looking forward and make the most of my situation!!

Welcome, you surely came to the right spot.

[Libertylane in reply to Grammy80]

Could I ask you how you got diagnosed? I’m having a hard time. I think because of My esr and crp numbers they are dismissing it. I have a lot of symptoms like ear and throat pain lots of UTIs and the temple pain etc. dull headache constantly. Biopsy hopefully this week but even that isn’t conclusive all the time. Feel miserable. Scared of eyesight of course. As you can see I’m in panic mode at the moment. Thanks for listening

[Grammy80]

'Morning......I didn't say this initially because I didn't want to frighten you because I understnad the 'Panic' state you are in.

When I started with neck pain, jaw pain and headaches my regular doc wasns't in and sent me to an urgent care clinic and I was dianosed with a sinus infection and given a short term script for prednisone, 60 mg per day for five days...no taper. That was a first for me. That was July 30. The day after I stopped the pred I had a couple of incidents of blurry vision that would come and go...I'd never heard of GCA so I just brushed it off. The next day I had four or five incidents of blurred or distorted vision come and go and still didn't think anything of it. I went to bed August 4th and woke in the morning to go to the bathroom and was blind in my left eye. I live alone and called an ambulance though I knew I hadn't had a stroke...my limbs checked out. When I got to the hospital I was examined by a few docs, the PA of a vascular surgeon who scheduled my biopsy and diagnosed with GCA....this was verified by the biopsy at the end of the week. The opthamologist I saw that day prescribed 1000 mg of pred IV for three days in a row then 120mg pred oral tablets....the hospital made a mistake and only gave me 100 mg injection for two days then I got the 1000mg.

Turn your fear into fight. I've learned that we have to be our own best advocates. Are you seeing a rheumatologist? If you aren't happy with your doctor is it difficult for you to switch? I have a million quesitons...do you have family, are you alone, how old are you?

I honestly can feel what you are feeling....I think not knowing is so difficult...and I was lost as to what to expect until I came to this forum. I'm still not all knowing FOR SURE, but I am not alone anymore.

If I had it all to do over....I wouldn't spend so much time trying to put a positive spin on it and push myself....I would have given myself a break and realized how much I had to worry about or grieve...give myself that license and then go forward. I tried to suppress so much I cried a lot. Know that not just I walk with you....but others too. My prayers

[Libertylane in reply to Grammy80]

I am 69 years old. I live with my husband It all started with a sore eye and dull headache on left side and some tenderness on left side. Optometrist thought I should check it out with primary care doc. He gave me 60 mg prednisone until I saw rheumatologist. Saw her two days ago and did esr and crp. Was down to 10 esr and .9 crp after two days of prednisone. Was 30 esr and 6.4 crp before Had lab work from March and was 10 esr and 6.4 crp then. Rheumatologist go off prednisone because she didn’t think my risk was high. Scheduled biopsy for Tuesday. In the meantime my symptoms the same some tenderness left temple. Ear sore at times and throat Now I have thrush which the rheumatologist diagnosed. Can see some temple artery veins sort of prominent on side of forehead. I panicked about an hour ago and took some prednisone. My vision seems a little more blurry but I have big cataracts so I don’t know what is or isn’t. Cortisone shots might have made those worse that I had for my back according to optometrist. Driving my husband crazy. That’s probably enough for now. Thanks for asking and listening. Did going off prednisone without taper after 5 days cause problems?

[Grammy80 in reply to Libertylane]

All I know is within 24 hours of just stopping the prednisone....I had some vision issues...the next day more frequent issues. I felt so out of control I don't know what caused what~! I will say...taking the prednisone as a precaution or as an insurance policy made me feel much safer. If it is GCA....you won't hurt yourself by taking it for sure. You sure do get to the point where you don't know what to do.....your biopsy is tomorrow?

It is tougher being in your shoes than your husbands. You are reacting perfectly normal.xo

[Libertylane in reply to Grammy80]

Tuesday is the consult and hopefully a biopsy. Office couldn’t tell me. I hope taking the prednisone doesn’t mess results up. Maybe I’ll skip prednisone tomorrow. Don’t know what that will do.

[Grammy80 in reply to Libertylane]

You are doing fine...it has not been my experience that the Doctors rely on one test, blood level or biopsy to make a comprehensive decision. He/She will look at the whole picture....for my rheumatologist...writing down my symptoms has been the biggest help. with you.....

[Grammy80]

I sent you a message~~~~

[Libertylane in reply to Grammy80]

How do you message. I’m confused. Tried to follow you but wouldn’t work

[Grammy80 in reply to Libertylane]

On your homepage to the right side of the banner are boxes....following and message. I clicked on message and it allowed me to send you a message that will appear under 'chat' on the upper part of this page....right next to the bell. I looked on my page and I didn't see a messge box....but it could be because I wouldn't be messaging myself??? I'm going to reach out for help. I've received messages....so I know it works, but how. Take care AND PS....it does show me...that you are following me...so congrats...that did work....I think we do very well since we didn't grow up with computers.