GCA, PMR and Diabetes Can GCA come back even if I am on Steroids?
Posted , 13 users are following.
Hi, I was diagnosed with GCA in May and was put on 60mg of Pred within 2 days my aches and pains, which I thought were arthritis, was gone I felt great. I started spring cleaning the house, then I had to slowly reduce the Pred and then the trouble started the tiredness, the sweating, feeling sick. I got down to 15mg and then was told I had Diabetes more problems, what could I eat and not eat? Today I am down to 8mg and have a very bad headache tempral pain, also behind my right eye down the side of my face and to my shoulder. My quastion is:- Can GCA recure even if I am taking 8mg of steroids. I have an appointment with my Dr this afternoon and have been told to rest until I see him. I am so on edge and stressed out worrying about going back to large doses of steroids again. My face has gone back to some form of normality after so long but I am so depressed. Don't know how much more I can take of this horrible disease.
0 likes, 18 replies
sue-dorset gaenor38609
Posted
simple explanation - too fast a reduction! I started on 80mg, reduced to 60mg after two weeks, ok, but then it took me over two years to get to 8mgs. I did have a couple of glitches along the way, but they only set the reduction back by about a month. I'm afraid whoever is overseeing your reduction plan has little knowledge of GCA.
You need to get the inflammation under control, and then keep it that way, and your quick reduction will not do that. Sorry to be brutal about it, but I lost the sight in one eye because my GCA was not diagnosed, so I'm always very concerned in case other people's GCA get out of control.
I know the side effects of Pred can be pretty horrible, but it's the only thing that controls GCA, and you have to take it in high enough doses for it to do that. If you read this before seeing doctor you need to ensure he is aware of what could (not necessarily will) happen if your Pred is not increased. Take care, and let us know what happens.
jean05221 sue-dorset
Posted
I'm Refractory GCA (Rheumy & 2nd opinion) with probably PMR too (no formal diagnosis)
I've tried Pred with MTX & ever smaller reductions. Now looking at Azathioprine!
I managed to get down from 60 this time by reducing by 2.5 however the head ache/scalp pain/temple pain returns intermittently. I still get jaw pain/sinus pain/ear-ache/double vision/black lines in my sight on wakening which disappear after a few blinks.
I often wonder if my top dose of Pred (60) is enough to settle the symptoms properly.........and/or should the dose be calculated using my body weight as a factor?
Rheumy feels that I dwell too much on the head pains & other symptoms and recommends that I "power through" & use pain killers (which have little or no effect).
CRP is 2 & has been for months so he feels that the inflammation is under control.
I was drawn to your comment about taking high enough doses for th e Pred to control the GCA.
I would be grateful for any comment.
Thanks.Jean
sue-dorset jean05221
Posted
60mg is the usual starting dose for GCA, but obviously everybody is different. I was started on 80mg because I hadn't been diagnosed for either PMR or GCA despite having, what I now know as classic symptoms, but then like lots of us had never even heard of either. After six or seven weeks of the GCA pains, I woke up one morning unable to see out of my right eye, it had been blurred for a few days, but I was assured by the GP it had nothing to do with my previous pains over the last eighteen months!!!!!!!! Anyway I rocked up at A&E dept to be diagnosed within the hour. The 80mg was to preserve the sight in my other eye, which fortunately it did.
Like you, no painkillers touched the pain during the previous 18 months; the only thing that did was Pred.
Your CRP figures are likely to be low at 60 mg, some peoples aren't high even before going on Pred, but some doctors don't seem to want to hear that.
My present GP, you won't be surprised I moved, says the symptoms are the key, not the blood levels!
I would have thought that a year at 60mg should have been more than ample to get a grip of the inflammation, perhaps you have something else going on as well? But I really don't know what - sorry. Hopefully someone more experienced on the forum may have suggestions.
i would suggest you speak to Rheumy, but he doesn't sound very sympathetic, so perhaps you should discuss with your GP.
Hope you soon get yourself sorted.
jean05221 sue-dorset
Posted
Thanks for your reply. I'm seeing my GP tomorrow - now armed with lots of questions and emailed rheumy, prompting a more sympathetic response & a double appt for 2 weeks time.
I'll keep posting when there's something to tell.
Kind Regards
Jean
sue-dorset jean05221
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gaenor38609 jean05221
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gaenor38609 sue-dorset
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sue-dorset gaenor38609
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gaenor38609 sue-dorset
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Guest gaenor38609
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gaenor38609 Guest
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MrsO-UK_Surrey gaenor38609
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The 60mg dose will have put you on a high and you aren't the first person to feel so full of beans on such a dose that you feel like spring-cleaning, but it's an artificial "high", and such exercise whilst suffering from PMR and/or GCA, especially in the early days, can put you back to square one, as you have unfortunately discovered.
We have to do our bit by respecting and resting our bodies to allow the steroids to do their job of controlling the inflammation, or the symptoms will come back to bite. Even when the inflammation is seemingly controlled, it doesn't mean that the steroids are curing anything - nothing does sadly at the moment. GCA will go into remission when it wants to and not when we or anythone else wants it to, and that can take anything from two years upwards.
I do hope that your Dr has advised you to increase your dose back up - not just to relieve you of your symptoms but, more importantly, to protect your eyesight which is at risk if the inflammation is not controlled.
gaenor38609 MrsO-UK_Surrey
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MrSolo_UK_Lancs gaenor38609
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lodgerUK_NE gaenor38609
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I have come late to this, but I would say to you, 2 weeks is too long.
You need treatment now, If you cannot get a quicker appointment with either yoour GP or Consultant. Then download the British Society of Rheumatologists Guidelines onf the Treatment and Diagnosis of GCA.
Print them off, read them and then go to A&E and ask to see the Consultant in charge and explain the whole situation. Do not hang around your sight is important and it should be dealt with now.
You talk about can your GCA recur, it is not cured, there is no cure, pred is there to control the inflammation and save you from losing partial or total sight and if that happens there is no going back.
It took me six months to reduce down from 60mg to 20mg and then I had a flare. and had to go back to 40mg and start again.
5 years down the line, remission, not cured there is no cure.
Do not delay.