Advice from members with GCA re symptoms while tapering

I have been looking out onto our back garden and the next door field, it is one of those glorious clear, crisp and icy mornings that remind me of being young and rushing out and sliding everywhere. What joy.

However I digress, I was diagnosed with PMR in Late May 2016 and started on 30 mgs prednisolone and other than one blip I have been pain free. Unfortunately I was diagnosed with GCA in September 2016 and started on 60mgs which has worked well.

I am currently taking 20mgs.

The main side effects I have experienced are the most commonly recognized, I have very poor sleep, my body unfortunately has not readjusted and I have had a rapid onset cataract and have had surgery and of course the dreaded fatigue, fuzzy head and shakes. I accept them all now, I do get along with life but it did take until about 3 months ago so I sympathize with newly diagnosed members who rage and say, "Not me, I will be off prednisolone in a year"!

My question is about the symptoms others with GCA still have or not whilst tapering.

I am aware that with PMR we look for at least a 70% reduction in symptoms and during tapering use that as our guide. What I am not sure about is that also true for GCA ?

The reason I ask is if it is also true for GCA is that 0-30% that will hopefully now be discomfort rather than pain caused by inflammation still causing damage so close to the brain?

I have fleeting symptoms in the morning and on and off during the day. They never last for long, a minute at the most and I would describe as mild. They are however definitely GCA, the pain in the occipital area moving up in front and behind my ear, in my ear and around the frontal lobe. Tight band around my head and tender scalp. I have permanent jaw pain but that I think is arthritis and I am seeing my dentist and wearing a gum shield.

I don't want in anyway to suggest that this is real pain it isn't and if I didn't have GCA I would think, "Oh what, this again", but not do anything about it, certainly not take paracetamol or see a GP. But I do have GCA and I am just not sure if most members with this condition would describe themselves in a similar way or not.

It does cause me some concern and like many others on this journey I have lost confidence in my own decision making.

Many thanks Judy

19 Replies

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  • Hi - I also have GCA, for over 5 years now, and after many ups and downs am on 8mg. To me it sounds as though you are experiencing most of the symptoms of GCA but at a level you feel is acceptable. I can only point out that when I have had all those together, however mildly, my Rheumy has told me to increase pred by 2mg and see if they are still there. It's really not good to be putting yourself in danger of losing your sight again. At 8mg I am mostly pain-free - just the occasional short-lived occurrence of head pains - and I'm planning the slow method move to 7.5 soon.

    Hope this helps - I know what you mean about losing confidence in your judgement.

  • many thanks good advice, I will phone tomorrow

  • Hi Judyliz,

    Think it probably is GCA, so as venezua1 says and I think your Rheumy/GP would agree an increase is sensible. You might find that going up to 22.5mg will be enough.

    As you say, there is no rush with GCA, you have accepted that - so be sensible about things, don’t ignore it and let it possibly get worse. However it may be connected to your jaw, but if that was the case you would expect it to be there all the time, so don’t hike the dose too much, just enough to see if it works.

    You will get your confidence in decision making back, but in the meantime no-one on here is going to judge you - all been there!

    Good luck.

  • many thanks

  • Hi Judyliz, I don't have GCA ( I don't think) but I just wanted to compliment you on your lovely philosophical attitude to your condition. The mental calm you have achieved can only do good. And you are taking the time to notice the beauty of the natural world. A daily gift if we would only take time to notice.

    I hear the fact that you have this understandable niggling anxiety about the physical reminder that GCA is still active. I wouldn't be quick to dismiss the jaw pain as Arthritis because it is such a typical symptom of GCA.

    Even though you don't feel that your suffering is great, you are worried that you might be ignoring a warning of damage being done. For that reason I would seek an appointment with my Rheumatologist to set my mind at ease. Far better to do that than suffer a consequence down the line. There may be useful tests that can be done at this stage. You've trained yourself so well to " live with it" but you cannot be complacent either. Put your mind at rest.

  • Thank you SJ, you are definitely becoming one of "The Wise Ones"

    Judy

  • Don't misunderstand the 70% - that is the improvement in symptoms that is to be expected relatively quickly (within a couple of weeks at most) in a patient starting on pred who has PMR. As opposed to any other form of disorder that is causing such symptoms, such as late onset RA or something else.

    This speedy improvement is unlikely in GCA and in the end you would want a better than 70% improvement in symptoms. But that could take months.

    But there are other things going on at the same time - that are very difficult to assign to a drawer. I'd be inclined to say that if it doesn't go with a bit more pred it may well not be GCA - but whatever it is, it is worth telling your doctor and asking what they feel about it.

  • I shall contact them tomorrow, thank you for your advice. Judy

  • Hi Judyliz. I will be writing as information comes out of my fingers. My thought processes are nondescript now after 9 years of Rheumatoid Arthritis, 5 years of PMR, laced with beastly follow up flares of GCA. I am in one now. Surround all that with a distinctly uncomfortable cushion of Osteoarthritis and you have my pain filled crippled life. I will tell you my symptoms and other stuff including lack of interest from medics. Perhaps I can help.

    RA for 9 years but only now is it becoming intolerable. Or is it! the pain of RA and PMR could be twins. Despicable, burning, life stealing pain in particular in shoulders, back of neck, biceps, triceps, In shoulders and across shoulder blades, elbows, , wrists , hands, ankles and feet. Not sure about knees because a particularly nasty Osteo has taken over, which hides RA very adequately.

    I was put on Pred for PMR 30mg at first, But my question about severe jaw pain was ignored! As was the pain that drilled through my left temple and seemed to emerge from the back of my skull. It is a sad state when the highlight of the day is taking steroids in anticipation of a couple of hours pain free. Then I have 4x daily 1000x paracetamol with 50 mg Tramadol.

    Nothing actually relieves satisfactoriy. I must rest now but please feel free to ask questions. I have omitted

    a lot.

    🌺

  • What an amount of conditions and pain you have to manage. I am in total awe that you have been able to consider my little predicament. Thank you so very much for taking the time I am truly grateful.

    Keep warm and I do so hope you receive some considerate, knowledgeable and empathic care from your medical team. I gather from your post this has not been happening.

    You are in my thoughts.

    Judy

  • Thank you so much for ypur kind reply 👍

    When I read your heading, I realised that your original question regarding tapering off pred had been ignored by me. I so sorry for that.

    So to repair that error - My first shot downwards was far too quick down from 30 mg to 10 within a month! Doctors orders.

    Thankfully I found this site with the wonderful PmrPro and the other very knowledgable members.

    Four years on, I hover around the 10mg daily mark

    but now have the uncertainty of is it PMR or RA. By the ferocity of the flares, my guess is RA. The rheumy is a Locum taking the place of my usual who is expanding her family (and waistline) each time I am supposed to see her. And my erring GP has resigned.

    So the best way to come off pred is to do it slower than slowly and never ever let the PMR hear you thinking what your next move is, or if you reckon you’ve got it licked! 😐🙄😊

    It can read your mind! 😜

    Take care and sleep well. xxxxx

    Christine

    🤸‍♂️

  • Enormous thanks for your kind and sensitive reply.

  • I definitely identify. I have constant mild headache, jaw and ear discomfort but not dibilitating pain others seem to have.

  • Hi Judy - I was diagnosed with GCA in August 2016 and like you started on 60mg of pred, with all the side effects of dizziness and fuzzy head and just generally feeling very unwell and fatigued. I am now on 10mg having had methotrexate for four months when I got stuck at 22 and a half mg, but felt so ill on it was taken off it but I think it did help me reduce the pred slightly more easily. I still get the tight head-band symptoms and dizziness but much less than before and sometimes acute tenderness in the scalp and mild headaches but my Consultant thinks this probably side effects of reducing although she says they are not sure whether it is possibly a little bit of the Arteritis. She is very honest in saying the experts don't know!

    If I get tired or overdo things I can sometimes feel grim and the fatigue is still pretty overwhelming but so much better than a year ago! Have learnt to pace myself wherever possible. So good luck.

  • Thank you, we sound to have very similar symptoms and from the same starting point. I am delighted to hear you have reached 10mgs. That is the dose I get a sense those of us with GCA have a huge psychological release of breath, once I am there I hope i will feel nearly whole again. Slow and steady.

    It does us all good to read how members are achieving results even if not quite there YET.

    Well done and again many thanks.

    Judy

  • Hi Judy

    How wise to take pleasure with just simple things. I do sympathise, I was diagnosed with GCA in April 2014 and told that “ in 2 years you will be cured” It’s been a bumpy road, doing well in the first year and experiencing most of the symptoms you describe, I am now on my third flare having got down to 4.5 and have been put back on 40 mgms as a precaution as my CRP is 38

    Consequently my blood pressure has gone up so I had to increase the beta blockers. I am seeing the Rheumatologist on Wednesday but the more I read about this disease the more confused I become. It seems to have a will of its own. Kate Gilbert , in her book talks about the sting in the tale and it’s definitely that, I think I have beaten it and it comes back.

    I have learned from this forum to try to go with the flow but also not to dismiss symptoms, itsalways worth getting them checked, your health is too important

    I hope today is as sunny, it’s lovely in Wales

  • Thank you Edith, I can only disappointed you must feel at having to increase the steroid dose again having reached a wonderful 4..

    A sting in the tail indeed.

    Judy

  • I have GCA, diagnosed in Nov 2016. Currently on 9 > 8.5mg. The symptoms you describe sound completely familiar to me.

    Over a few years before diagnosis I also had assorted pain which I assumed to be osteoarthritis (mainly hands, hip and knee) plus problems with my shoulders which I originally assumed to be similar but now wonder about. Those all disappeared on high dose pred, but are beginning to make themselves felt again as the dose is coming down.

    Up until yesterday I'd have said that I hadn't had the severe headaches, tender scalp or jaw pain for quite a while, and was becoming hopeful. But this morning I woke with a noticeable headache. It did wear off quite soon and I'm hoping it's a one-off. But I know what you mean about lacking confidence in one's own judgement.

    The dreaded fatigue, fuzzy head and shakes seem to be a given. I used to be a great walker, and my sense of balance was excellent - good up ladders - but not now. My shakes are much better than earlier in the year, and the fuzzy head and fatigue are improving but still loom large. Sometimes a bit of associated nausea. I've had sleep problems that swing from one extreme to the other. In the early months, on high pred, I seemed to sleep all the time. Couldn't stay awake, for months. Then it began to change and fluctuate. These days I find it difficult to sleep at all.

    I have a lot of eye 'flashes', which I never had before GCA, but my eyes have been scrutinised and seem ok. No cataracts (so far). But I do have steroid induced diabetes, which is a blustering nuisance, affects my life quite a lot, and is the main reason I am reluctant to go too slow on pred reduction.

    So, I think I do describe myself in a similar way - and constant uncertainty seems to be part of it.

    But I agree w others that you'd better not dismiss the jaw pain. Better safe than sorry? In my case it was definitely a symptom of GCA, and I'd check that out if it I were you.

    Onwards with hope.

  • Hi Judy - a bumpy road! I had GCA (diagnosed last December). I say 'had' because both rheumatologist and my GP said it has gone. Finished! That was the easy part. Coming off prednisone is a very slow process - side effects lessening but still annoying. I am now on 4mg, reducing 1mg per month. Everything has gone to plan, blood tests and three-monthly monitoring assure me it is treatable, manageable. I will be off all drugs in June. Though as with all auto-immune disorders, vasculitis lurks, and if it does flare, I know the signs, I know what is happening, I know what to do.

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