GCA fear

Reading the posts on this forum has been a great support, knowing there are people out there who understand what it means to have this dreadful disease is a fantastic source of information and comfort. I am though becoming more fearful of the PMR turning into GCA. When I was first diagnosed the doctor put me on a starter dose of Pred of 10. I realise I was fortunate that such a low starter dose worked. I managed to go down to 7 but that was a step too far. I'm now back at 10, pain gone, fatigue awful. I'm getting better at pacing myself though. Unfortunately when I was feeling more myself I arranged a trip north to see my family. We are still away from home and boy is it exhausting. Lovely to see everyone but.......

Must get to the point. Yes I'm stressed and I've always been a worrier. The more I read on here the more concerned I'm becoming of the PMR turning into GCA. It took 6 months for the doctor to diagnose PMR, inflammation markers were not high. Started on a low dose, which worked. Reading about the symptoms of GCA is confusing. It's seems it can either come on slowly or in few hours. Having been unable to get a fast diagnosis of PMR it's worrying that this could be the case for GCA. Being away from home and feeling stressed I'm hoping the pain I'm getting in my temples is stress and tension rather than something more acute. It's not very painful and I've no other symptoms, no tender scalp or jaw pain. Just a dull pain. The fear of losing my sight isn't helping. Sorry I sound a pathetic idiot. Just need to talk, poor husband doesn't deserve more moaning from me. We are not due home for another week, it's going to be a long week!

21 Replies

  • Hi Jean56,

    Sorry to hear that you had problems with starting at what appears too low a dose. But if you say, that back at 10 mg you now feel okay, I would suggest you stay there for at least a month until you get back home and have given yourself and your body chance to settle again.

    Then, when you try to reduce again, use a slow tapering plan, if you didn't before, and maybe try only 0.5mg a time - certainly when you get down to about 7mg. That around the dose that your own body would produce, so is sometimes a bit of a stumbling block.

    I wrote to someone yesterday about the PMR/GCA conundrum. Some people get PMR, some people get GCA, some get both. There doesn't seem to a reason why, other than if the PMR is not treated it CAN (not will) manifest into GCA in some people.

    It's not a certainty, but it is something to be aware of!

    There are many people who have PMR long term - and don't get GCA. in fact, most don't!

    I would guess your head pains are down to stress, so try and stop worrying and enjoy time with the family.

    In rare cases sight loss can come quickly, mine was over 4 days, BUT I had been undiagnosed for 18 months, had head problems (those you've listed) for 2months with NO Pred at all.

    It is unusual that it comes completely out of the blue without any warning signs whatsoever, but it would be remiss of anyone not to mention it.

    Hope that helps a little.

  • I'm so sorry you had to go for such a long time without diagnosis and to lose half of your vision. My mother had glaucoma that wasn't 'noticed' by her optician until she had lost two thirds of her sight. (Optician was struck off for making errors) too late for mum and several others who had to live with the consequences. So I'm very aware of the difficulties loosing some of your sight can cause.

    I'm pretty sure my headache is caused by tension. I keep telling myself relax. Being tired doesn't help, resistance is low and you start to worry. I will make a doctors appointment for when we get home and if it gets worse see a doctor up here.

    I was daft planning this trip. Too far to travel and a lot of moving around from place to place. No problem when your firing on all cylinders! Lovely to see everyone but exhausting......

    Thank you for taking the time to reply.

  • It's awful when one spirals into a pit of worries. Nobody can diagnose for you but a few thoughts.

    PMR can be tricky to diagnose because it can be quite non specific, and there are oodles of other causes of the symptoms. As you have PMR already, if you present to the Dr with head probs they should already have one big clue already that GCA should be considered. Therefore you shouldn't have to go through the same drawn out processs.

    Yes it is scary that your eyes can go in hours according to some accounts, but having read a few things now, it is unusual for eyes to switch off with no worsening of the pain out of the blue. My GCA treatment was started after the symptoms got worse overnight after a vague right sided headache the day before. Before my eyes got really bad, I had intense burning in the temple and above and chewing my lunch made it worse, but not in the jaw joint. I would still get it checked but don't panic.

    Are you a tooth grinder at night or even day? This can cause temple pain.

    Have you tried telling your hosts that you are feeling exhausted? Or are you trying to be the life and soul of the party?

    With your history and with some symptoms and you still have a week to go, I'd see a local GP so they can have a prod. A GP should always see you the same day or be able to direct you to an out of hours service. If it is worsening then A&E or being helped by anything. For a few hours' disruption you may gain relief and enjoy the rest of the week (with rest!) or if you are needing treatment for GCA you'll get it quickly.

  • Thank you for your reassurance. It probably is tension causing the problem. I should never have planned this trip. Lovely to see everyone but tiring. They are aware I have a health problem and are being very understanding but it's not like being at home when you can just flop. It's a lot of running around from place to place and lots of chattering. Living out of a suitcase. Of course when you're tired you worry more. This is a trip I would have thought nothing about before this disease made its appearance. It's unfortunate I had to suffer the flare up a couple of weeks before we came away. I was doing so well before that, serves me right for becoming smug! I should have listened to my long suffering husband and cancelled.

    I'm going to make an appointment to see doctor when we get home and if problem gets worse will see someone here. As you say I'm gritting my my teeth and making it worse.

    It's all such fun......

  • Although a very small number of patients have something called occult GCA it is VERY unusual. You have had some symptoms so occult GCA isn't likely. You say your markers weren't high - were they raised at all? Many people with PMR don't have particularly raised levels, in the 20s is common - where some doctors will tell you it is "normal range", especially "for your age". Both out of date attitudes.

    For the majority of patients, it is thought that there is still a window even once visual symptoms manifest, in most cases about a week. So if you have any visual problems don't mess about, get someone to take you to the ER/A&E and be insistent about seeing a senior doctor. Visual signs can also be due to stroke - so they should see you and see you quickly.

  • Thank you. My markets were slightly raised when the blood test was taken in November 2015. Doctor said nothing to worry about. In March 2016 different doctor looked at same result and said same thing. I burst into tears and my husband pointed out that the result was several months old and I had become much worse. Could hardly move my arms and shoulders couldn't bare any pressure on them. It has all been mainly in my upper body, some pain in my thigh muscles but not as bad. It was at that point he perscribed the 10 mg of Pred. Which surprisingly for a low dose worked within two days and until I dropped to 7 controlled the symptoms well. Next time I start to drop the dosage I'm going to follow the very slow plan mentioned , sounds infinitely sensible.

    I am tired and fairly stressed so I'm hopeful it's tension causing this pain. Will make appointments to see doc on our return and should it get worse will see one here or go to A&E.

    it's wonderful to have so many people who take the time to reply. Bless you all.

  • It doesn't MATTER what the blood levels are - they are only a guide and symptoms trump figures any day.

    Treat the PATIENT not the lab results! Bah!!!!

    Why doesn't this forum have emojis??????????

  • Couldn't agree more. I have often felt that we are not seen as actual people but just a test result. I'm fortunate to have a new doctor who seems to listen. He wanted to reduce my thyroxine as I've been on the same dose for ten years without any problem, he thought it was too high. I wasn't happy and said I was concerned that would cause me more problems on top of the PMR and steroid medication. More problems I didn't need. It was already like having a chemical war going on inside me. Much to my surprise he agreed and actually said yes you have enough to cope with as it is. Long may he continue to listen. Some doctors especially in hospitals seem to forget that they are treating a person and that you own your own body and would, surprisingly, like a say in what happens to it!

    Before I had my hysterectomy, at the age of 29, a male doctor said to me that my pain couldn't be as bad as I described....argh!!!! I asked if he had ever had a menstrual cycle. The look I got was, don't be a silly woman. He of course replied no, I told him not to tell me how bad I felt. I had endometriosis and all my organs were glued together the pain was on the high side of high.

    As I say life can be fun......

  • Did you see the report last week or the week before about that sort of thing? How women typically need 10 attempts to get a diagnosis? If men had the babies and all the related problems it wouldn't happen.

    My daughter, while at Uni, was told to go away and have a baby as that would sort out her endometriosis problems! If only I had known - he'd have been reported to the GMC. I needn't tell you his ethnicity...

  • Yes, I did. It's horrific in this day and age that women have to go through this time after time. I had, had problems all my life, backwards and forwards to the doctors. It had a drastic effect on my life and my marriage. One doctor, when I was in my early 20s, suggested that it was all in my mind and would I like to see someone to discuss my problems. I declined and tried to carry on life with lots of painkillers and hot water bottles. It was only when I collapsed and was taken to hospital they found what was wrong. That time it was a ruptured ovarian cyst and because my inside was such a mess they said later they hadn't spotted the endometriosis. I battled on working full time, in continual pain. Until finally they agreed to a hysterectomy. They said I was too young, this was when I started to point out to them it was my body and I couldn't go on coping with the pain. I was treated in the ward as rather odd because I wasn't upset when I came round from the operation and found, yippee, it's all gone, no more pain. Best thing that ever happened. I couldn't have children, so what on earth was the point of keeping it all....

  • I was talking about endometriosis with my sister today and we think it is male doctors or perhaps males in general who have not heard of it rather than females, so we are going to do a survey!

  • I have met a couple of very non-empathetic female gynaes - very unhelpful.

  • Add them to the list of unhelpful rheumies, unhelpful GPs

  • Certainly there are some women about who have no clues and others who have themselves sadly 'internalised' some very misogynistic notions about women' - but the medical profession is still essentially patriarchal [ie. a system which primarily benefits men] at the core. Just reading any historical material about the experiences of women in relation to general medicine/psycholgy/psychiatry is pretty revealing - even not especially 'feminist' material. OK some will say that things may have improved over time but women are still often regarded as not quite 'knowing' or 'being in charge' of their OWN minds and bodies. So still very important to be assertive and direct and not give up too easily when you know or feel things aren't 'right'.

  • You are left to ask why when more than half of medical students are female!

    Of course, men tend to predominate at higher levels since a lot of those women doctors wish to work part time - which doesn't encourage career progression.

  • Yes interesting - but as happened in Russia the more 'feminised' a profession becomes the more it is devalued - as with teaching. But blokes still disproportionately dominate at 'higher' levels in education in most countries as well - no doubt for similar reasons as in medicine.

  • Hi jean56. I do sympathise as I am in a similar situation, albeit tucked up at home and certainly not out and about much yet. Diagnosed 4 weeks ago and started on 15 pred I am still in quite a lot of discomfort.I rushed to Gp last week as jaw, temple, neck all had feelings of pressure. Bloods showed I was reacting well to pred and was sent home. I did read that pred can give you some temple pressure too? Neck and jaw feel ok this week, temple still has pressure. Knife edge stuff.

    33 years ago I saw a neurologist as I had awful pains in my head. He said I had post-natal depression with baby and toddler and army husband away. He humiliated me and suggested I pulled myself together ...... that very afternoon the abscess on my brain burst ....... enough said!!!

  • Becoming v familiar w this knife edge! Need a safety net.

    Onwards . . .

  • Thanks for your sympathy. I'm sorry your having such a rotten time too. I've still got the pressure headache, thankfully, it hasn't become any worse.I'm hoping and praying it's due to my daft idea to do this 'road trip' around the family. During the few weeks early this year when I felt I was actually feeling fairly normal it seemed such a good idea! Such a pity the drop of Pred to 7 was one drop too many and it all flared again.

    The problem when doctors have, like in your case, totally disregarded the symptoms, I hesitate to say misdiagnosed as no diagnosis is really made and then you suffer the horrible consequences, it doesn't fill you with confidence. It makes you fearful the same could happen again. The very thought of losing sight sends me into panic mood. Which I know doesn't help the situation.

    Good luck!

  • Jean, I hope you have been able to relax a bit since listening to those who have commented to your post. A lot of good advice has been given but most importantly is for you to know how you feel and then act on getting professional help as soon as you feel a change happening. Meanwhile, breathe deeply, love yourself into a peaceful sleep and maybe when you wake in the morning you will feel the benefit. I do hope so. God bless! xx

  • Thank you, yes I'm trying to follow the very good advice given. It's so wonderful people take the time to give so much support. Fantastic to know you are not alone. We have another move on tomorrow. It's great to catch up with everyone but boy am I looking forward to going home. I'm telling myself not long now! I've learnt a lot this past two weeks. I think I'm possible much better at saying, no, sorry can't do, possible later but we will see.

    This disease is a very steep learning curve!

    God bless!

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