Sho-Sho - New Member

I was diagnosed with GCA nine months ago and started on 60mg of Prednisolone, after a very bumpy ride during which I was admitted to hospital three times, have eventually managed to reduce to 16mg. My Rheumatologist, concerned at the problems I had with the tapering prescribed methotrexate 15mg weekly - I have been on it for four months now but have felt increasingly unwell after taking it. Is this normal? Have also felt dizzy every day since I started on the steroids, I was told this would decrease when I was on a lower dose but it hasn't, plus acute fatigue. Would just wish to feel normal again!

Have been very lucky with a wonderful doctor and Consultant plus amazing husband who has cooked supper for the last year.

I am 71 and was in perfect health and fit due to long walks with my dogs.

Would very much like to hear from other people with GCA, it is a very isolating condition.

23 Replies

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  • I joined yesterday and I'm 73. Too ill to write much today but was curious if you had the biopsy for diagnosis. I have PMR and possibly GCA. Have been bedridden for two years and thought it was just my fibromyalgia getting worse. Depression and isolation are hanging out with me. I go for second appt at rheumatologist next week to further discuss labs and treatment. On 20 mg prednisone now.

  • Aleish, has the prednisone helped you? I hope so. It would be good if you've finally got a treatment which will make you feel better and enable you to get out and about again.

  • Yes, I had a temporal biopsy which was positive, but sometimes you can have GCA despite the biopsy being negative. Sorry you are feeling so ill steroids can also make you feel depressed.

  • Hi Sho-Sho,

    Welcome,

    Have never been on MTX, so can't advise on that, but first impressions would be that you have reduced too quickly which would explain why you have been having problems with your tapering. Plus if your Rheumy put you onto MTX after only 5 months he seems to be in too much of a hurry to get you off Pred -but unfortunately that doesn't seem to be unusual.

    This is what I send to newcomers, hope it will help you understand your illness a little better, and enable you to control it, rather than the other way round, which seems to be what is happening at the moment.

    It's what I've gleaned from my own (GCA) and others experiences with GCA & PMR over the last 6 years. I have no medical training or expertise, except from a patients point of view.

    There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites etc. Too much to take in all at once.

    Apologies if I'm repeating what you already know.

    PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illness can be controlled.

    Lots of us are never sure what caused the underlying conditions of GCA and/or PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.

    In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it usually affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. If only affecting your head it's sometimes referred to as Temporal Arteritis (TA).Serious sight problems can arise if the ophthalmic artery is affected and stops blood getting to the optic nerve, if that's damaged then partial, or all sight can be lost. If your Aorta is affected it can lead to strokes, aneurysm etc.

    The only drug that controls that inflammation is Prednisolone (Corticosteroids), as I said it does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Unfortunately it does have some rather nasty side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes or high blood pressure, but not everybody gets all the side effects, and they can all be managed.

    Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes less, occasionally a lot longer. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!

    The initial high dose (PMR: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.

    When you collect your fist prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or surgery may have leaflet.

    The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not!

    As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.

    If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.

    Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best. Just ask!

    Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am; some people take their Pred around 2am so that by the time it is fully in their system (uncoated

    about an hour or two; coated about 3-4 hours) it's ready to fight the inflammation.

    Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.

    There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

    Look up 'Spoons Theory on web, (Butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.

    You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle recover, and that now takes longer.

    Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

    As I said at the beginning a lot of information to take in, but hopefully you can come back to it as and when you need to.

    Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime.

    Take care.

  • Thank you, that is really helpful. Interestingly both the Rheumatologist I see (one NHS and one privately as found it very difficult to get appointment on NHS when I needed help) were very determined I should reduce the steroids to a lower dose because of the damaging side effects. I am going to stick at 16mg for a few weeks as I can feel a little bit on the edge.

    I just wish I was given much more information about GCA at the beginning which would have made all the side effects much less scary.

  • Yes unfortunately lots of doctors have this love/hate relationship with Pred. They know it's the only drug that helps with GCA/PMR but are worried about the side effects, which I admit some are very disturbing - I know, been there, especially on high doses.

    The point they seem to miss, or ignore, is that if you have GCA and it's not treated correctly you are in danger of losing your eyesight (nothing can reverse that once it's gone) or having a stroke or heart attack. I'd admit that scenario may not be very common, but it's common enough. There are lots who lose all or partial eyesight (usually due to late diagnosis) - some on here, myself included. Heart attack/strokes are rarer. But the side effects of steroids, although unpleasant at times, can be managed, and do recede when you get to lower doses.

    I don't think they like to discuss the side effects either, which is unfair to patients - but maybe they don't want to be seen as the bad guys!

  • Hi Sho-SHo

    Dorset Lady says it all really. I have PMR/GCA -diagnosed 2 years ago and still struggling 8.5-9 mgs, I have had 3 flares, so I would say you have reduced really quickly.

    I tried Methotrexate but it upset me, I would have a headache and feel completely lethargic and ill for 3 or 4 days after taking dose. Others do seem to be ok, so I think its down to the individual to see how they cope.

    Don't rush yourself, this is a long journey for most of us and one where we have to learn patience.

    Best wishes.

  • "My Rheumatologist, concerned at the problems I had with the tapering ..."

    I think your rheumy needs to come into the real world! Many people would take 5 or 6 months to get from 60 to 20mg. If you reduce in too big steps or too far - you have a return of symptoms. In fact, it is agreed that they are the most common reasons for a patient having problems.

    Using methotrexate MAY help reduce - but an educational video posted on here a few days ago reported that if mtx is to help reduce in GCA it must be started within the first month. And there is little point taking it if it makes you feel ill - even the experts are agreed on that!

    The dizziness may well be due to the GCA - or did it not start until you were put on pred?

  • Thank you for your comments. In fact the dizziness only started when I went onto steroids, just wish it would start easing off.

  • I think these conditions of GCA and PMR can be very isolating and you can feel folk just do not understand - that is friends and family and medical staff included. Add to that the mix of feeling not well, the pressure put on by some medical staff to reduce the steroid dose with the implication that you are just not trying or bothered, what appears to be a limitation of your previous life, and it is no wonder that we can sometimes or even often feel overwhelmed. Previous posts have recently mentioned coming to terms with this new way of living and the acceptance of a serious medical condition that needs treatment but isn't necessarily for ever and can progressively get better, albeit that it might take a long time. This forum therefore is invaluable to sound off your worries and concerns and know that folk understand and can give support and advice. Also on the PMRGCAUK website there are lists of meet up groups and support groups if you're in the U.K. that again these are so encouraging and give you the support to traverse this wilderness of ups and downs. There is also a DVD produced by Northeast group( I think) of PMRGCAUK which is entitled ".You are not alone" which you might want to source on the PMRGCAUK website. Do continue to keep in touch and let us know of your progress. X Jackie

  • I don't think the DVD is to be sourced via the PMRGCAUK site but the NE charity website which is separate:

    pmr-gca-northeast.org.uk/

    The NE charity was the first to be set up, after the Scottish one which was already extant and provided advice for the English adventurers.

  • Thanks for the correction. I got my DVD a long time ago- obviously forgot exactly where I got it from but was very helpful to hand to family members.

  • It was just for information - we're only to pleased to send copies out!!!!

  • I developed GCA in 2012. I followed a Pred reduction plan with the usual dose reduction patern; that means rapid and large dose drops until getting down to 10mg and then doing a slow taper. Eventualy I got down to just 1mg when I suddenly one day, when out on a gentle walk I had double vision again. Because of the risk to my eyesight this meant having to go back to 60mg of Pred again.

    There are a lot of posts covering the issue of the tapering of Pred. The advice varies but the main theme is that it is necessary to taper very slowly. I have discovered what works for me and it is an approach advised by my hospital Consultant. Instead of tapering down at a rate related to the blood test results, I have been reducing at a rate relaing to how I feel over a period of time. Let me explain:

    The initial taper of Pred was quite fast (as before). After dropping a step on the Pred dose I had noticed a pattern that after about one week and then after about three weeks I would not feel so good for several days. Then when things had 'normalised' I would time my nexst drop for about three weeks later. However, other factors such as having a cold I would extend the delay before dropping. My guide has been the keeping a annual calender chart with daily entries so that I can see at a glance 'how I have been' with time. I can look back and see patterns of symptoms and that gives me guidance as when I can do another Pred drop. I have wondered why the patterns are as they are following a Pred drop and my guess is that the Adrenal glands take some time to adjust for the Pred drop [and perhaps the adrenal gland outputs don't both adjust at the same time for some reason].

    I am now back down to 2mg and have been dropping by just 0.5mg having reached the 8mg level. My Consultant emphasised the importance of a taper relating to 'how you are' rather than relying on blood test results. My reason for this careful approach is my desire to get back to a much higher fitness level and to be free of drugs whilst avoiding another relapse. A few months should reveal whether this approach has worked for me.

    I have done a lot of research into GCA and learnt a lot including the need for a new type of blood test that will have greater accuracy - a better predictor. Hence the need to judge the dose taper on 'how you are'. Relapse is not an uncommon factor and can occur several times. I think mine occurred because I was trying to do too much and ignoring how I was. Recenty I have become a lot better; more energy and a brighter outlook etc - and doing a lot more.

    I hope this will be of help to you.

  • Hugely helpful, thank you, particularly over when to start the next taper.

  • pmr-gca-northeast.org.uk/st...

    A GCA patients story, now in remission.

    However remember we are all different with our pasts our illnesses but we are all human.

  • One Question

    Was your hearing affected when you were first diagnosed?

  • No, I never had a problem with my hearing.

  • Thank you for your reply.

  • Hi Sho-Sho,

    I was diagnosed with GCA (negative biopsy) mid January this year. Started treatment with 60 mg Prednison, tapered down to 40 mg till end of February. CRP went up, temple ache and headache and my Rheumy phoned me and I had to increase to 60 mg again. Pain disappaered within five hours. On 60 mg ever since, CRP goes up and down and up. Started Methotrexate two weeks ago, 60 ml. Seems to make the persistent temple ache I have to get less. I feel my temple ache more like a kind of pulling or pushing, some kind of movement rather than pain. My jaw joint feels stiffer and sometime I feel I can't hear as well as normally. Some days are very fatigued, others are good. I've found a rhythm in all of this. I'm 67 and was very active and went to the gym often. Not so now. But I've accepted this illness and my husband and I are going to live with it and make the best out of it.

    What I've learned is that it does get better in a way. We adjust and this forum helps a lot. I hope you have many good days ahead of you.

  • Thanks - good luck to you too.

  • Hi sho-sho I was diagnosed with PMR first in Jan 2015, started off with neck pain and thigh pain, my CRP and ESR was very high, and I was prescribed 20 mg pred, I had seen a rheumatologist from the start, so after 2 weeks she reduced my dose, so went from 20 mg to 12.5 mg in 12 days, and that's when all hell broke loose,

    I developed jaw pain, arteries very prominent at side of temples, and headache, I was admitted to hospital, I had a positive biopsy, and my dose was increased to 60 mg pred, I felt fine leaving hospital, my ESR and CRP was down,

    but next day severe headaches, and rheumatologist didn't seem to want to increase my dose, so she prescribed pain killers, which didn't help, I actually couldn't put my head on the pillow, I lost my sight in right eye for 15 minutes, which was very frightening, I had 3 episodes of this, but I was so lucky, i suppose we all take our sight for granted, after that I would go for walks and take it the sights and really appreciate the beauty all around you😀

    My dose was increased to 80 mg and I was fine, except for side effects😆😆

    I'm down to 4 mg now, I do have some pain, but not bad, I suppose I'm obsessed with getting my blood tested as my CRP and ESR always reflect on pain I'm having, a couple of weeks ago I had a lot of pain in neck and thigh pain and shoulders were a bit painful and had it for over 2 weeks and believed it was all coming back,

    I had my bloods taken and they were normal, I was going to increase my dose, but stayed on dose I was on 4.5mg, but I'm glad I didn't increase. Caused seems to have settled down now, still have some neck pain but not bad and I can live with it, it can be very isolating, no one understands it.

    Hope this helps, take care

  • Thank you for your reply, very encouraging to hear that you are now on only four and a half mg, I have many moments when I can't imagine I will get there, I have only just realised what a long-term condition this is.

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