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GCA, PMR and Diabetes Can GCA come back even if I am on Steroids?

Posted , 13 users are following.

gaenor38609
gaenor38609

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

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  • sue-dorset
    sue-dorset gaenor38609

    Posted

    Hi,

    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
      jean05221 sue-dorset

      Posted

      Your post to Gaenor helped me too - I've been struggling to reduce Pred from 60 for a year now and still am at 55 after several flares/glitches.

      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
      sue-dorset jean05221

      Posted

      Hi Jean,

      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
      jean05221 sue-dorset

      Posted

      Hi Sue

      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
      sue-dorset jean05221

      Posted

      Hi again Jean. Well done you. We could do without all this extra hassle on top of GCA, but I suppose life would be boring then ! Hey ho. Sometimes it pays to be s stroppy woman- I've found anyway! Good luck tomorrow.
    • gaenor38609
      gaenor38609 jean05221

      Posted

      Hi I have been put back on 60mg of Pred until the blood results come back. I am going for blood tests this morning. But back on 60mg and I am in no pain but up at 4am this morning wondering what to do with all this energy while my husband is in bed. At this rate the furniture will be polished back to bare wood haha. Well you have to laugh or you get depressed. I should be going on holiday to Turkey in November I just wonder if that is a wise move. Best of luck and let me know how you get on, very interested in how other people are because it helps me as well. We are all in this for the long haul I think.
    • gaenor38609
      gaenor38609 sue-dorset

      Posted

      Thank you Sue for your comments it has helped me a lot and I feel so much better. I am back on 60mg from yesterday and have had a lot of things explained to me. My Dr did an examination and said "I can't see that you are at a risk of a stroke at the moment". I said "I hadn't thought of that". "Oh dear" she said "I've made you feel worse now". I asked her about GCA and if it was still active even though I was on Steroids and she said yes if the inflamation is still in the body it can flare up at any time. So I am going for a blood test today and the result could be back by Friday hopefully. Down side of the 60mg is I can't sleep and wondering what to do with all this energy. It's now 5.15am and I have already polished the livingroom furniture to one inch of it's life. Hubby still in bed so can't put the hoover on.
    • sue-dorset
      sue-dorset gaenor38609

      Posted

      Hi again gaenor, know exactly what you mean about sleeplessnes and hoovering, trouble is I woke at 2.30am - even less hubby friendly.  Fortunately mine only lasted for about a month and then I got back to normal. Trouble is, so did the energy levels, so do what you can now, because in a few weeks when the euphoria from the steroids wears off you won't feel like doing anything. It's certainly a roller coaster ride you're on! I see in one of your other posts you are going to Turkey, well go and enjoy, but don't reduce before or during your holiday, and make sure you have plenty of tablets just in case, flying is stressful, and GCA doesn't like stress. Good luck with your news from GP. 
  • Guest
    Guest gaenor38609

    Posted

    I am GCA only and started in March. Each of us is different but I truly agree that you are reducing pred much too fast. We have to learn to live with the dreadful side effects. I hope this forum helps you know that you are not alone in this. Rest as much as you can and take carbs out of your diet. Those two things have helped me the most. Take care and see a doctor who can help you, Ann11195. USA
    • gaenor38609
      gaenor38609 Guest

      Posted

      Thank you Ann everyone on here has helped so much and I feel much better back on 60mg now until I get the blood test results. When I was dignosed with GCA and then PMR I felt so alone. This forum is really helpful not only with advice but also to asure me that I am not alone. Thank you.xx

       

  • MrsO-UK_Surrey
    MrsO-UK_Surrey gaenor38609

    Posted

    Oh dear Gaenor, what a shame that after such a good response to your starting dose within just a couple of days, you have obviously reduced the dose by too much and too soon, added to which you spring-cleaned the house.

    ​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
      gaenor38609 MrsO-UK_Surrey

      Posted

      Thank you MrsO. I am back on 60mg of steroids and feel much better. Having blood tests today and hopefully the result will be back by Friday. 
  • MrSolo_UK_Lancs
    MrSolo_UK_Lancs gaenor38609

    Posted

    Hi gaenor38609 from Mr Solo UK Lancs, I cannot believe the rate at which you reduced you PRED, it comes as no suprise what so ever that you are struggling, who on earth put you on such a steep tapering regime?. It seems wrong that we as a group (PMR sufferers) have to rely on luck of the draw as to the knowledge & attitude of our individual medical professional. I feel very comfortable & lucky have my GP who not only listens, but also goes along with some of my suggestions whilst impememting my treatment. I think that you need to hook onto MrsO + Eileen & several other contrbutors to this forum, they have such good advice to offer & if you cherry pick best practice from them you will soon feel the benifits. I think the words "SLOWLY- SLOWLY- CATCHY- MONKEY" would be my advice to you + maybe a change of GP etc.etc. I have not contributed to the the forum of late due to holidays & family comitments, but after continuing improvement in my ESR level of 5 down from 30 in June, CRP level of 2.1 down from 61.7 in June. I am now tapering down from 20mg to 15mg.of PRED.(started on 30mg. in June) will be taking much smaller steps after this as have felt a bit on the edge with latest tapering of PRED. I still think listening to all other contributions (150+) on return from hols. that I am one of the lucky ones, apart from an all over body tingley/irritable/numb feeling i'm not doing to bad. hands/feet/hips & thighs are the worst affected. Still able to do most things pre; PMR but much slower and in smaller bites, my attitude remains nothing other than positive. To those who are struggling, try to be positive, it does help, to those who are making good progress, remain positive & to enable continued progress. To those of you who can see light at the end of 'The PMR/GCA tunnel', move very very slowly towards the light. I wish you all that you wish for yourselves. ATB Richard   
  • lodgerUK_NE
    lodgerUK_NE gaenor38609

    Posted

    gaenor

    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.

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