Greetings from a fellow sufferer!

I have just joined healthunlocked and recognise the comments from others, especiallyregarding the ups and downs of prednisolone.

I was diagnosed with GCA in September 2014 with an ESR reading of 147 and started on 50mgs of prednisolone. It was an instant "cure". I came down to 6mgs by September 2015 and that's when GCA came back painfully. My GP and I agreed to we had come down too quickly, so I went back up to 30mgs. I recently reached 12mgs, but as my ESR reading started to move upwards (from 2 to 8, a long way from my initial 147!) I'm now on 13mgs and will keep ticking over on that until my next blood test in January. Will I ever be free? Only time will tell.

Before I contracted GCA I'd never heard of it. I go now to London SupportGroup meetings and it's a bit of a relief to know that I am not alone and to share information with others. I'd like to start a meet up group locally - I live near Epping in Essex. If you are interested please let me know.

That's all for now. I'm looking forward to reading other's comments and joining in where I can Best Wishes to all

12 Replies

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  • hi Roy,

    as you've found out, 50mg to 6mg in a year, much too quick. Although, men do seem to be able to get through this more quickly than most ladies. Luckily for them.

    Took me 2.5 yrs to cover same ground as you - slightly higher starting dose, and I think it's the 1st six months that are crucial in regard to GCA, it takes that long to really ensure the inflammation in under control - not "cured" - no such thing.

    Stick at 13mg for a little while, probably good idea for 2 or 3 months during winter. Then try 1mg a time until you get to about 7mg - another tricky time when your adrenals have to kick back in - then try 0.5mg a time. May also need to use a slow taper rather than an "overnight" drop - easier on the body.

    You will get there - but you have to do it slowly - for 2 reasons - making sure the inflammation is under control at all times until it burns out, and if you rush your Pred reduction it doesn't give your adrenal glands chance to start working again.

    I had GCA and/or PMR for 18 months prior to diagnosis, so well advanced, and it took me 4.5yrs to get off Pred - so 6 years all told - maybe I could have done it quicker, but I got there in the end.

    Hopefully your journey won't be so long, but it's not a quick fix - despite what doctors would have you believe.

    Good luck.

  • Hello DL - I know you're off the Pred now(?) but glad to see you're still on the forum! A couple of points:

    If you have GCA, do you nevertheless have the other symptoms of PMR - i.e. Shoulder/hip pain?

    I don't know how anyone could endure months of symptoms prior to diagnosis. Although I had to be cajoled to visit the GP, in truth there would've been no way I could have put it off for much longer - life was impossible, not least because of the 1hr sleep per night!

    Was it unusual for me to have such a relatively quick onset - 3-4 weeks?

    Best Wishes

  • "If you have GCA, do you nevertheless have the other symptoms of PMR - i.e. Shoulder/hip pain?"

    That depends - some people just have GCA with head symptoms or various sorts but no sign of PMR at all. In some people PMR features as one of the symptoms of the GCA. It all depends which arteries are affected really. In some people they present with the head symptoms and are treated for GCA - and eventually as they reduce their dose of pred they may develop PMR stiffness and pain when the dose gets too low.

    PMR can manifest either as an overnight thing - the person goes to bed feeling perfectly OK and wakes up almost unable to move - or it can creep up over months, even years. Often people THINK it happened over a few weeks or even faster - but when they stop and think about it they realise there were signs they had put down to age, overdoing it, having a cold/flu, all sorts of things.

    I had it for 5 years - and repeatedly went to the GP. My blood tests were normal range - so there couldn't be anything wrong. I was also on the young side at 51. The bursitis was the worst for pain, the rest was stiffness that prevented me from doing all sorts of things or made it difficult at least. Amazing what you manage to do when there is no choice though!

  • Hi,

    From my own experience I'm never sure whether I had PMR first - had some of the symptoms, aching biceps initially, quickly followed by shoulder pain, left always much worse than right, which led GP to diagnose frozen shoulder. ESR was measured in the 30s which 6 years ago was deemed to be satisfactory - apparently. Shoulder treated by physio for 6 months, which I now know probably made it worse, not better! Then followed steroid injections every 4 months, which helped for a few weeks, constantly being told 'you'll wake up one day and your shoulder will be better'. I didn't.

    By this time I was fatigued as well - no connection made - plus not being able to turn over in bed at night. I was taking so many OTC painkillers day and night that I kept a diary to ensure I didn't overdose.

    Also looking after my chronically ill hubby so we seemed to be at the doctors every week, and my state of health still wasn't picked up - looking back I really can't explain how it wasn't. But I guess my hubby was the priority and because I'd always been in good health, I went unnoticed. Plus as PMRpro says it creeps up on you over a period of months, and you put down to other things.

    With Christmas on the horizon, I'm reminded of my 2nd Christmas before diagnosis (following April, so it must have been really bad) of standing in front of the cooker, absolutely wiped out and thinking 'how am I going to lift this bl***dy turkey out the oven'. I did, but I really don't know how I got through the day.......and then 2 months later I got the bad head.

    Looking back I don't know how I endured those months, a mixture of cussedness, ignorance of GCA, worrying about my hubby, belief that next day it would be better......but as PMRpro says - you struggle through.

    That's why I'm still on here, to stop others going through similar.

  • You were ignored by your GP because it was all put down to your husband being ill. Been there too. "You're under a lot of stress - so of course you feel ill." They nearly killed him - and had a darn good go at the rest of us!

    The one who failed to recognise PMR some years later was harmless in comparison!

  • All too familiar unfortunately. Mine was horrified when I eventually made a complaint- didn't seem to occur to her that loss of one eye could possibly be her fault.

    Don't get me started on missing hubby's liver cancer!

    Water under the bridge though- move on!

  • David was lucky - his atypical testicular cancer responded well to chemo. But thanks to the GPs it was a very narrow squeak.

  • And that's why this forum is so valuable! VERY interesting re: the shoulders - my GP half-heartedly recommended an X-ray, gave me a list of local NHS clinics and I proceeded on a 'hospital crawl' to find a place to carry it out! No real help, as you might guess, and I never did take up the physio referral - just as well as I only got a call about 8 weeks later..... Not everyone can do this I realise, but I stumped up the cash and got a private med Rheumy. Diagnosed within 48hrs and came out of clinic clutching my first dose of Pred (did bump the car on the way home but hey-ho, felt 75% better before I even took a tablet!). You can nevertheless, understand why we PMR sufferers dread a turn towards GCA - I'm aware of how it affected you.

    Good to see that you're getting off the drugs and wish you all the very best at Christmas!

  • Thanks and hope you enjoy yours

    I'm at pains to say my case was extreme. Had PMR been diagnosed and treated I'm sure it wouldn't have turned out like it did. I may still have got GCA but wouldn't have lost right eye

    For most people with PMR who are on enough Pred don't get GCA. Some do. But I think that's because you need a much bigger dose to control GCA inflammation, and the normal dose of 15-20mg for PMR is nowhere near enough.

    So don't be paranoid about getting GCA - just be aware.

  • Hi DL. Many thanks for your sound advice. I'm certainly in the category of slow but sure! I had no idea that winter months are not the best time to reduce dosage. First lesson learned from the Group!!

    All of my problems have been down my left side. For the past 4-5 months I've had a shoulder pain, again left side, but no other pain. I figured that it was a bit of a strain and at my age, fair wear and tear. Seems from others' comments that I might have got it wrong and PMR has kicked in. Second lesson learned from the Group!!!

    Now a question. Has anyone tried alternative medicine or therapy either for GCA or PMR? I've tried homeopathy with limited (if any) success, though my sleep pattern did improve. I'm not sure whether to continue

    Regards

    Roy

  • Anyone who tries alternative medicines/therapies as a substitute in GCA is really playing with fire - the risk is that the blood flow to the optic nerve will be reduced or even stopped by the inflammation and that must be reduced quickly to reduce the risks. Once visual loss has occurred that is it, no going back, there is no way to reverse it. Even with drugs - until now only pred has been proven to sort it out so even trying other drugs means using pred as well on ethical grounds.

    PMR is less of a problem in that when it doesn't work - you will just be in pain and stiff! I managed my PMR for 5 years using aquaerobics, Pilates and Iyengha yoga plus visiting an osteopath and a Bowen practitioner. They kept me upright, That wasn't out of choice - I didn't find a GP who recognised PMR without raised blood markers (or anything without blood markers I suppose!). I wouldn't go back there believe me!

    I think over the entire 7+ years on 3 forums I have met no-one who has succeeded to get through PMR without pred. There are people who have probably reduced their pred dose by using alternative therapies, HeronNS is probably the most successful but she has access to low level light therapy via her healthcare policy as physiotherapy in Canada where it is fairly common. It isn't really an option in the UK - there are only 3 or 4 clinics offering it and it is very expensive there.

    Adding anti-inflammatory foods such as oily fish, turmeric and garlic (providing they don't clash with other medication) seems to have helped some people, they say they noticed the difference if their routine was changed in terms of diet.

    One or two have found that acupuncture has helped them - and I have had a technique called needling, otherwise known as intramuscular stimulation, which really helps what I call the add-ons - the myofascial pain syndrome bits. That means I manage on a lower dose of pred for the purely PMR symptoms - but it doesn't do much for the PMR I don't think. Manual mobilisation of the MPS trigger points is similar but less invasive and possibly easier to find a therapist, and also makes a difference. And Bowen therapy has also helped a lot of those sort of problems for a lot of people - but again probably not the PMR.

  • Hi Roy.

    PMRpro has answered most comprehensibly.

    I don't think I had particular problems reducing in colder weather personally, but it's a time when your body is under more stress, so it makes sense.

    I know my arthritis seems more troublesome in winter - like you left side mainly - but that's another story entirely.

    Am leaving the south for slightly colder, wetter weather in next few days so I shall see how much the temperature affects things.

    Good excuse to sit by the fire and enjoy the Christmas fare! If I needed one, that is 😉 That's my alternative therapy sorted then.

    Cheers

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