GCA

[castingcollectives]

Diagnosed with GCA 18 days ago on 40mg but pain kept coming back so on 50mg still getting ear ache is this normal? Still worried about my sight.

[Hidden]

Hi castingcollectives, Welcome! You are in the right place and will hopefully find answers to all your questions; as there are many experts on the site to help you.

How long have you been on 50mg? Do you still have the headache? The neck pain?

Two days after being put on 40mg (for GCA) in 11/2017, my GP asked if I felt 100% better, 90%? 75%? When I said I thought I felt maybe 60-70% better she increased my Pred 60mg... two days later she asked the same question. That time I said I was 95% better and she kept me at 60mg.

[PMRpro Ambassador]

It depends on the person - some people get very quick relief, others take a few days. At 50mg your sight should be OK - did you have visual symptoms before diagnosis? And you are resting - not trying to catch up with whatever you didn't do before? You are ill - behave like a poorly person for a while.

[castingcollectives in reply to PMRpro]

Hi no earache came on occasionally but now in both ears head better biopsy hurt like he'll. Was told I could go to gym and yoga do anything but afraid will make pain worse. I used to be a model am 77 but still do bits of work.Am very depressed about whole thing my b- in - l had this and is blind in one eye.But still ok at 90! But still on steroids 7 yrs later. Does this thing ever go away completely ?

[PMRpro Ambassador in reply to castingcollectives]

Oh for goodness sake - "Was told I could go to gym and yoga do anything"!!! I do hope these stupid doctors develop GCA/PMR themselves one day and have to take high dose pred... See what it feels like.

Yes, you can (and should) exercise, but only what you can tolerate and that really doesn't usually include long sessions in the gym. Most people find walking works OK and aquafit maybe. But you can try and see how you get on.

Strange that the earache is worse on pred - but that probably suggests the earache isn't the GCA (it can be a symptom). Could it be an infection? High dose pred does sometimes make you more likely to develop infections but would also suppress inflammation due to an infection so have a mixed effect. Maybe check with the GP? And maybe try chewing gum - in case your tubes are blocked, that might help.

I know several people who have had GCA, developed in their 70s, and who have been off pred for several years with no relapses. On average I'd say it took them 4 or 5 years to get off pred. So yes - it can go away. I'm not sure I'd say it goes away completely as the potential for autoimmune disorders to revive is felt to be lifelong - but the Mayo Clinic does speak of "cure" for GCA.

[alvertta in reply to castingcollectives]

Biopsy was the worst for me. Really hurt.

[castingcollectives in reply to alvertta]

Been put up to 60mg as still got ear ache had another.blood. test couldn'the find vein bruising really badly is this because of steroids? Don't usually bruise.Also lost weight and I'm only 47k normally I'll be a skeleton soon!

[pinks33 in reply to castingcollectives]

I hope your pains subside soon. They should do on 60mg pred. I too am a thinnish person who continued to lose weight on steroids. I lost about 10 lbs while ill before diagnosis and another 10lbs after steroids. You may find that some of your weight loss is due to loss of muscle mass. That was certainly the case with me and I found that a gentle daily walk really helped. It was only when below 20mg pred that I regained my appetite and some weight. I also had random bruising for the first few weeks on steroids, and this is a known side effect. I'm on 12.5mg now and haven't noticed any bruising for some time.

[castingcollectives in reply to pinks33]

Thank you so much for your reply it really helps as I've been so stressed I live separately from my husband so spend lot of time alone not good keep thinking I'm going to wake blind

[pinks33 in reply to castingcollectives]

I know exactly how you feel. All of us with GCA have experienced that initial fear. But as the days pass the fear will subside. Being on high dose pred may also in fact help you to cope. It did give me a feeling of euphoria and a sense of well being which balanced out the fear. I hope too you have friends and neighbours who can support you and look in on you. Too much time on your own with you own thoughts isn't good. And you also have this forum to turn to, where you will find kind and wise listeners.

[piglette in reply to castingcollectives]

It does seem if they have trouble finding the vein you will get bruising. Recently they tried six times to get blood out of me. They did succeed in the end but I looked as if I had been in a fight. It then turned out that they were unable to do all the blood tests as not enough blood, or they had dropped the phial, and I had to go back the next week when it only took five goes to get blood, they took as much blood as they could just in case!

[castingcollectives in reply to piglette]

Thank you I never bruise but they couldn't get blood out like you...... look like a drug addict!

[GOOD_GRIEF in reply to castingcollectives]

You have to go slow and gentle with exercise. Pred makes us more disposed to injuries including tendon tears, which s the very last thing we need now. Concentrate on keeping your range of motion and flexibility with gentle - and I mean gentle - stretching. Strength and stamina will return gradually, but only if you avoid injury in the interim.

Your recovery will proceed more easily by eating well, taking your calcium and D3 supplements, getting sufficient sleep, and by getting sufficient rest. Doing too much is counter-productive, and can actually make your condition worse.

[SnazzyD]

Was earache a feature before diagnosis? If so, I would have a word with the doc. I would have thought your symptoms ought to be under control after 18 days if the dose is sufficient. 60mg got mine under control, including my nose diving eyesight, within 2 hours. As PMRPro says, rest is very important but often quite difficult on high doses of Pred if you are one of those who feel like they’re powered by rocket fuel.

[DorsetLady PMRGCAuk volunteer]

As others have said, 50mg should be enough to preserve sight. Is your earache one sided or both? Think you would be wise to speak to doctor tomorrow.

But as PMRpro says you are not cured and cannot return to normal life, you have a serious illness and need to act accordingly.

Please keep us informed of progress.

[Telian]

Hi castingscollectives and welcome to the site.

You are right to be vigilant as it can be a bit of trial and error initially finding the correct dose for you. Your eyesight should be safe on your current dose but keep your GP/ Rhemy informed of all changes. As already asked what were your symptoms pre-diagnosis?

I don’t associate earache with GCA but everyone’s different - see your GP on that one.

My GCA symptoms disappeared within 8 hours of 50mg Pred and my sight

returned. I stayed symptom free unti I started my first reduction - it was a huge learning curve because the symptoms mimicked GCA - it wasn’t a flare it was withdrawal symptoms and took a while for me to be convinced my eyes would be okay. I always suffered visual disturbance prior to diagnosis and was treated for migraines initially. I did lose the sight in one eye but my GP was quick to act and I believe that saved my sight.

Don’t hesitate to come back with any queries - there’s always someone to share with.

Just remember what works for one doesn’t necessarily work for another but it’s how we learn about our body. Learning to pace yourself is important too as stress isn’t a good friend of GCA/PMR. Best wishes.

[castingcollectives in reply to Telian]

Thank you I am very stressed consultants appointment brought forward as had tone up to 60mg as earache and neck very painful this helpline is such a comfort as most people even family get fed up with me going on about it.

[Telian in reply to castingcollectives]

You’re always welcome here as many times as you need us - it’s a difficult illness to get your head round and I’m sure your family aren’t really fed up - in my case they just didn’t understand and only time teaches them. Tell them it’s a serious illness and you need their support please. Hope the earache is improving!

[pinks33]

I had unbearable earache in one ear, and stabbling pains behind the ear, just before diagnosis. Was put on 60mg pred, and all pain disappeared overnight and hasn't returned. I have though lost some hearing in that ear. I would have thought that if you are on the correct dose pf pred, you shouldn't have continuing pains, but everyone reacts differently and I would check your current dose with your doctor.

[castingcollectives in reply to pinks33]

I have seen consultant 60mg did the trick but can still feel it but inflamation levels are down so should be OK have to take steroids for a year as I have osteoporosis and one fractured verterbra bit worried but have zolendronic acid injections calcium and V.D hope that will help.First time a feel I sleep without worrying about loosing sight. Thank you all for your help.

[pinks33 in reply to castingcollectives]

Really good to hear your symptoms are under control. Stay positive. Good luck with your ongoing treatment.

[PMRpro Ambassador in reply to castingcollectives]

It is very unlikely that you will be off steroids in a year, even with GCA which tends to go more quickly than PMR. Why do doctors give patients such false hope?

[castingcollectives in reply to PMRpro]

Well I hope so really worried about affect on my osteoporosis as have broken one verterbra already also told diabetes heart attack more likely on steroids sounds terrifing.

[PMRpro Ambassador in reply to castingcollectives]

None of it is inevitable - and GCA is at least as likely to cause cardiovascular problems as the pred. You can reduce the risk of steroid-induced diabetes (it is different) by restricting the simple and processed carbs in your diet. That also reduces the risk of steroid weight gain - many of us have done so. Start a new thread and ask for others experiences.

[castingcollectives in reply to PMRpro]

Thanks

[alvertta]

I had huge flashing lights in my left eye. Could not see when the flashing was on. Doctor gave me 1000mg prednisone for three days intravenously, then 60mg orally Reducing over the last 4 months, now on 40mg. No more flashing lights in the eye. Little headaches once in awhile. My doctor looks at blood test every two weeks and determines dosage. Re exercise, you will not feel up to much at the beginning. Walk a bit. Find a great book with laughs and read. Be kind to yourself. You have a long road ahead. No rushing.