When will GCA Symptoms resolve

[Stillstargazing]

HI All, I've now been on 60mg pred for 9 days and 30mg for 2 days before that. Am still experiencing significant tenderness in one area of my scalp, head pain and pressure and inner ear pain and pressure. Am booked for carotid artery scan on 26th October and TAB on 28th October when I will have already been on pred for more than 3 weeks. My GP flagged with the hospital that this is outside the 2 week window but to no avail. I keep reading that people normally experience quick resolution of symptoms once on pred. I have not had any more visual disturbance but am still feeling very unwell. I saw my GP last week and advised him them symptoms continuing. He gave me a spray for ear pain and said he thought that was a red herring in the context of the other symptoms. The spray has had no effect and I have read a number of accounts and papers mentioning ear canal pain in GCA. I am worried that the steroid does not appear to have brought the symptoms under control even at this high dose. My GP said he did not want to increase the dose and I am having another ESR test on Tuesday. Any advice would be very much appreciated as I am feeling a bit frightened now.

[DorsetLady PMRGCAuk volunteer]

Hi Stillstargazing,

I can understand you are worried about your symptoms, quite naturally. I started on 80mg, and if I remember rightly was still in some pain at that dose. I didn't have a TAB as the consultant didn't deem it necessary - he was 99% sure of diagnosis from the loss of sight and other symptoms etc. After two weeks, when my ESR had gone down a bit and the Ophthamologist was happy about my other eye I reduced to 60mg.

Although some people get almost miraculous relief from pain almost immediately, it is more likely that about 70% of the pain is gone for most - and I think that's probably more likely to be PMR rather than GCA. As lots of cases of GCA come after you're already suffering from PMR (although not all) then it's quite feasible for it to take a bit longer for the Pred to kick in even though you are on a higher dose.

I think the main thing for you to concentrate on is visual disturbances, and as long as you are not getting any problems with your eyesight then you may have to put up with the other pains.

If you are really worried, then either speak to GP again reiterating your concerns or try taking an extra 5mg to see if that makes any difference. However, if you get trouble with your eyes then go straight to A&E, don't hang about. Good luck

[Hidden in reply to DorsetLady]

I think you have reduced too quickly. I did 60/50/40/30 but on each for a month. When I tried dropping from 40 to 30 at 3 months my pain returned so I went via 35mgs. Don't drop at all until your pain is bearable at your current dose. That holds for every dose - even going from 2 to 1!

[Stillstargazing in reply to Hidden]

I have not reduced. Was on 30mg for 2 days then increased to 60mg which I have been on for 10 days now and symptoms have improved but not resolved. I would say only about a 30% improvement.

[Hidden]

Ignore me! I misunderstood your post. You are still on 60 now I see. In that case , you might need to up to 80. Getting the inflammation under control is the vital first step.

[Celtic PMRGCAuk volunteer]

I can so understand your fear, but it is still very early days on 60mg and whereas a few lucky patients do have a very fast response to the steroids, for others it can take longer for the starting dose to get complete control over the amount of inflammation circulating in the body. It is usual to achieve around a 70% improvement in symptoms but that can take several weeks at the starting dose for some patients. The fact that you haven't had any more visual disturbance is promising, and you are already aware of the need to seek immediate help at A&E should any visual pain or blurring return. I started on 40mg which dealt with my head pain very quickly but, like you, I continued to feel very unwell for some time. I didn't have a TAB as my consultant was so sure about my diagnosis. Ideally, it would have been better if your biopsy was a week or so sooner but it isn't very long to wait now although I know it must seem an eternity when you are in pain. Meanwhile, do try and relax and give yourself plenty of TLC. Good luck!

[PMRpro Ambassador]

The quick resolution of pain most people report is for PMR - which although probably the same disease is a far less severe manifestation. Unfortunately most people here don't differentiate between which they have been diagnosed with so it can be a bit misleading. As the others have said, 70% improvement is much more likely - but in PMR when you can't move that feels like a miracle.

I have to ask since I can't remember - were you not sent to hospital as an emergency if you had visual symptoms? That is a medical emergency and really belongs straight into specialist hands, just like a heart attack or stroke. A specialist should have had that much more clout to get the TAB done and the carotid scan would also have been done in days not weeks.

Quite a few people say their pain and discomfort remained for some weeks. And remember, you have a serious illness so there is no wonder you still feel quite ill after only a couple of weeks. As the others say - if any of it gets worse go straight back to your doctor, even A&E if he isn't available.

[Stillstargazing in reply to PMRpro]

I was sent to A & E and Casualty Eye Clinic and have had my vision checked and they say it's fine. The opthalmologists played on the side of caution and told me to increase the pred but made it clear they thought I was too young for GCA. They arranged the carotid artery scan and TBA but I have not been referred to a rheumatologist. All I really want to know is whether my vision is still at risk if I am still getting so many head and ear symptoms. Does the fact that I still have so much head and ear pressure and pain and scalp tenderness mean that the symptoms are not well enough controlled to protect my vision and that therefore I need a higher dose of pred. I managed to get my GP surgery to slot me in for ESR and CRP test today but my GP sent message saying no need to see him till after the biopsy result. I am so thankful this forum is here as the support is amazing at a very frightening time. Thank you

[DorsetLady PMRGCAuk volunteer in reply to Stillstargazing]

Hi again. Glad to hear you are having bloods done today. Get the results as soon as you can, pestering the surgery if necessary until you do. The results should be back within 24 hrs, 48 at most. If your figures are lower then I would say you are probably OK sight wise. If they haven't reduced since your last ones then you may need to increase the Pred. As I said in earlier post if you are not happy about vision then go to A&E if necessary. But I think, and hope, you may be worrying unnecessily. Thoughts with you. DL

[nannyjc]

Hi. I was given 60mg at first, and my symptoms disappeared within a few days. However it's been six and a half years and I haven't been able ever to reduce below 5mg before the earache and headaches return. My 5mg is a holding dose seemingly forever according to my rheumy. Watch the steroids and your bones. I could scare you loads with what might happen, but keep up your spirits!, xx

[Stillstargazing]

I'm scared enough already but also want to know so I can protect myself as much as possible. Am taking 3000mg adcal daily.

[PMRpro Ambassador in reply to Stillstargazing]

Try to stop worrying - I know, I know, it's easy for me to say! That just makes you even more aware of any pains. But be watchful.

But when you speak to your GP tell him you would like to be referred to a rheumatologist immediately because you aren't comfortable with an eye specialist who tells you you are too young when you know that, while it is not that common in the early 50s, it is by no means impossible. And I imagine actually that rheumatologists see more people with GCA than he does.

[j-e-a-n]

Hi, I too am still on 60mg Pred after 4 weeks as the GP left me on until I got to see the Consultant a week tomorrow. Me ear pain has all but gone, but still have jaw and neck pain on eating, though not as much. Have not needed any painkillers for a couple of days. Still sleeping very little, although last night I had 6 hours which was wonderful. Want to drop down the prds a bit but all the same dreading what may happen. Hoping yours soon gets sorted and under control.xx

[Stillstargazing in reply to j-e-a-n]

You too Jean. All the best

[Nap1]

I think he took you down too fast. I was on 40 for a month and then very ill went to 20 and to the Mayo Clinic in US. Completely relapsed and back on 40 for 2 weeks now and sed rate is still 34 too high. That might help, going back a little higher. This is my second bout, had PMR and steroids for 3 years. One year free and the GCA. Feel like this is my new life, side effects, sugar problems, eye infections, headaches really bad from the steroids and ear problems as well as muscles. But this too shall pass. I just don't want to break any bones.

[Stillstargazing in reply to Nap1]

I haven't reduced the pred at all yet. Was on 30 for 2 days then increased to 60 11 days ago ESR and CPR are improving but were 30 and 9 only two weeks ago despite all symptoms. I think I was expecting too much in terms of symptom resolution once on pred. Sounds like you have a tough ongoing battle. I'm very worried about bones too if I have to stay on pred long-term. All the best to you.

[Joyful13]

I was diagnosed with GCA in June I started with 60mg of Prednisone after losing some vision in my left eye. I also have glaucoma, so the high dose of Prednisone increased the intraocular pressure in my eyes to a dangerous level, The ophthamologist put me on a second eye med. to try and reduce the pressure in my eyes which has been successful.

When I reached 30mg of Prednisone, I had a major flareup of the GCA symptoms with severe headaches that lasted 7 days. My doctors had me go to the ER to be evaluated for meningitis, which was proved negative after a spinal tap. After this setback, the rheumi and I decided to return to 40mg of the Prednisone which is currently what I am taking.

The severe headaches have gone. However, I'm still having some jaw pain, headaches, and feel poorly. I have also developed a terrible case of thrush (a Candida infecetion) in my mouth. I am taking RX throat lozenges for the thrush, but am doing a lot of research about Candida and how it can affect many parts of your body. This is the second thrush infection I've had since being on the Prednisone.

I share all this to say that I haven't been symptom free with the GCA since I started the Prednisone. I'm realizing it's a very difficult balance with the Prednisone dosage, tapering Pred. and not going too low to stir a flare up of symptoms. I have told my rheumi that I want to reduce the Prednisone, but very cautiously so I don't experience a flare up. I'm repeating my ESR and CRP tomorrow, and will see how things are going inflammation wise.

I wish you the best. Take one day at a time with all of this. Otherwise, it's too overwhelming, and the fear and anxiety can make the symptoms even worse. Slowly but surely, you will find the balance between the Prednisone and your symptoms. I really do support you and will be glad when all your tests are done. Take care.

[Nap1]

Thank you.