PMRGCAuk
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Is it GCA or isn't it?

Hi, I am an otherwise healthy 63 year old woman who recently developed a massive headache! Not only has it lasted 24 days now, I have spots on my temples that are tender to the touch, my hips ache and I have shooting pains down my legs! As if that weren't enough I am utterly exhausted. Two trips to the hospital in a week and four blood tests, show an elevated ESR, but a normal CRP, both times. They won't do a biopsy because the numbers don't support it. They put me on 40 (and have increased it to 60) mg of Prednisolone which I have been taking now for 5 days, but headache comes back every day late afternoon, early evening and this feeling of total exhaustion overtakes me. Should the steroids have taken away the pain by now? Should I still be so tired. Seeing a Rheumatologist next week. Any advice?

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I'm not impressed by your hospital - by not doing a TAB at the earliest possible opportunity they may have missed the chance. It isn't a guaranteed result anyway but when it is positive it is a good thing to have on the record. You should have been sent to a rheumatologist (or one fetched to you) as an emergency because they obviously suspect SOMETHING to have put you on 60mg pred! What's the matter with treating the patient and not the numbers? In any case, up to 20% of patients with proven GCA do not have ANY raised blood markers, you do at least have raised ESR.

Are you treating yourself as a "poorly person"? Because you are if you have GCA and your symptoms really are suspicious. It is a severe systemic illness - like real flu and that is where the fatigue comes from. It is returning later in the day as the effect of the pred wears off and the Duracell Energiser Bunny effect fades a bit. So the fatigue is "normal". The pain should fade fairly quickly I think - but I didn't have GCA so can't speak from personal experience. How long have you been on the pred altogether? And the 60mg? it isn't clear to me what you mean. 60mg is usually enough but some people need even more.

Where are you?

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Thanks so much... I found your reply helpful. After having symptoms for 12 days, GP sent me to A&E. After 8 hours and two blood tests they said it wasn't GCA it was a migraine, sent me home. Told me to see GP if not gone in 5 days. It wasn't, so I returned to GP. She sent me back to A&E, who then repeated the blood tests; they were about the same (normal CRP, slightly elevated ESR). The Doctor who does the TAB said the chances of him finding anything were only 1in 500 and he didn't want to take the risk, but both he and A&E GP agreed that I should start 40mg of Prednisolone daily. They told me to go back to GP in 4 days. I went to GP this past Tuesday and told he I was 60-70% better, but not perfect. She increased the dosage from 40 mg to 60mg. So all together I have only been on steroids for 5 days. I will see a rheumatologist next Tuesday. I appreciate your point about treating myself as a person who is "poorly," because "No," I have not been! No one has actually said if this is serious or not... I have not been given any information about what to expect or possible complications. I have been surfing the internet reading as much as I can find, but there are a lot of conflicting opinions, especially when it comes to accurately diagnosing! I am hoping the Tuesday appointment with the rheumatologist sheds some light... I will take it easy and try not to do so much in the mornings when I feel pretty great! Thank you!!!

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Here's a link to another PMRGCA forum. The third post is our reading list. They are all reliable and approved articles, some are support websites,

patient.info/forums/discuss...

Yes, it is serious, it should be classed as a medical emergency - since a potential risk is of loss of vision. Now you are on pred that risk is much reduced but the actual illness is still going on in the background and it makes you unwell. The body needs rest to be able to heal.

The NE of England charity has a welcome pack and a DVD - called "You are not alone". It explains some of what is going on - compiled by physios, doctors and patients.

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WOW! Thanks, that is fabulous. I really appreciate the response and the support. After laying on the couch for pretty much the last 26 days... I'm feeling a bit more hopeful! Thank you so much.

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Reading should be about the limit of your activity for a week or two!!

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That's the hardest thing! I just can't seem to grasp that one day I was fine; working, running around, getting ready for Christmas... and the next day (27 days actually!) I am down and out for the count! I work, I volunteer at the hospice, I sit with people who are at the end of their life... I don't have time for this!!!! ...as silly as that sounds. I don't even know if it is GCA!!! GP seems unsure why I still have bad headaches in the afternoon and evening since I'm on the meds? She is somewhat clueless and told me today to carry on until Tuesday when I see specialist. Thank you for listening and the advice and resources... I do really appreciate it.

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Tuesday isn't long to wait and let's hope you get some answers.

In the meantime, be thankful that your GP has acted quickly, unlike some folk's GPs.

I hope you soon get a the diagnosis and treatment plan sorted out and can start on the path to recovery.

You know from your volunteering that there are worse things than GCA and PMR, but you must still look after yourself! Many of us grieve for the loss of our previous good health, but acceptance of the 'new normal' is important. Perhaps you have someone at the hospice to talk to, if you need to?

Take care.

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Whether it is GCA or not - it is something! If you had real flu you'd have to accept you were ill for a while. Once things are under control you will able to go back to your hospice sitting providing you aren't having to lift and stuff. But for the moment - YOU are at the centre of the medical care. It is just a hiccup - as Rugger says, you of all people know there are far worse things to deal with. This too shall pass...

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Namaste.

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I hope you get some answers on Tuesday and a plan for your treatment. When my GCA was diagnosed I'd had severe headaches for a while and I thought they were migraines or sinus related, I was also wiped out. That was almost 3 years ago now and I am just about down to 8mg of prednisolone. This forum is wonderful for the information, help and support it gives. Good luck and please keep posting.

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Oh dear, you are being pushed around! Not too sure if A&E is the appropriate department as, as name suggests, it is not an accident though requires emergency treatment. I was sent to a diagnostic unit at our local health board (Waitemata District Health Board in Auckland) where, in two days, a team of doctors and consultants in eye, heart, vascular, neurology etc fields put me through tests, scans, x-rays - you name it, I had it. They ruled out or homed in on the cause of my headaches and eye disturbances. A temporal biopsy confirmed it was GCA. (December 2016)

Now I have been told GCA has gone, kaput, forget it, and what's left is coming off the prednisone at 1mg drop per month. Now on 5mg. Should be off it in June next year. Very confident of that! Still have blood tests and monitoring by a hospital rheumatologist.

GPs are not specialists in particular fields but their expertise should be in recognising how to get you the correct diagnosis and where to get it.

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Wow! I am so very impressed with your treatment! GO, Waitemata District Health Board in Auckland! I am an American living in the UK and I truly love the NHS, but must admit the system is struggling. Had I been in the USA I perhaps would have had similar treatment. In retrospect, I find it very frightening that I was simply told it was a migraine and sent home to wait 5 more days! If it is GCA (which is still only a suspicion) I could have gone blind. If it's something else, I have suffered now for 27 days, without diagnosis. The only reason I will see a Rheumatologist so quickly is that I have opted to go "privately." I would have waited 8-12 weeks had I not. : (

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There are fast-track clinics in increasing numbers of hospitals so possible GCA patients can be referred in hours to be assessed. That is within the NHS and they work. A lot depends on the abilities or otherwise of your GP to realise that is what you require. Apparently in some hospitals the A&E department is being staffed by very junior doctors who simply don't have the experience to recognise what is potentially happening rather than A&E consultants. In Yorkshire the paramedics are trained to recognise if a patient may have GCA and fast-trck them through A&E.

So - like in rural areas of any country, it may be a postcode lottery.

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A friend (not in NZ) was told by the ophthalmologist that she needed stronger glasses, sent her home with a pair and panadol for the headaches. When I posted on my FB page an excellent overview on GCA 'Keep It In Your Head', an NZ webpage for health practitioners, she read it and rushed to see a rheumatologist who immediately suspected GCA put her on predisone - this saved her eyesight!

What really helped me as well was that I asked to be kept in the loop, to have GP and Rheumatologist case notes shared with me. I said I want to know and understand what was happening, what were the effects of the disorder v side-effects of the medications. They were more than happy to do that. Also impressed that I joined forums.

At least Britain has an NHS . . . like we do. For all those tests, scans, hospital stay, consultations, biopsy surgery, the cost was zilch! If I had to grumble, it would be that I had to fork out $NZ20 (total) for the number of times I used hospital car parks. Haha. Prescriptions are also subsidised at $5 per unit. (GP, though, charges like a wounded bull! But there is relief even in this as I qualify for a Disability Allowance to help with things like lawn mowing, transport, fees (if I need any assistance.)

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Hi Mamaici1,

I have GCA/PMR and your symptoms sound a lot like mine were when I first got it. The GP (General Practitioner) could not diagnose it and some specialist could not either, it is a tough one for them. I did not have intense migraines but had sight problems and pain in the hips and legs, also in most of my other joints. The fatigue was terrible. My eye sight was affected and my Temples were tender.

The way my GCA was diagnosed was that I lost sight in my left eye and went to my Eye Doctor and he immediately knew what it was. The Doctors (three of them) put me on 60mg of Prednisone and it worked, I got my sight back. The key was the speed from my Eye Doctor and the 60mg of Prednisone. Like you the Prednisone seemed to wear off later in the day but it did help me immensely.

I am far from an expert but this is a tricky disease to diagnose, don't give up. The experts on this Forum are very good (they have been through it) and can be helpful to you. I hope this helps.

Enan

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Many thanks! I am so happy to hear our sight returned!!! Thank goodness! Yes, I am frustrated and bummed out... but when I saw this Forum, I felt hope. At least I know I'm not alone and that many others are going or have gone through it! Thank you so very much for your response, I so appreciate it.

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Hi,

Welcome! I don’t post often but visit daily. The folks on here are invaluable! As for docs, go in armed and let them know what you think is best for you. They don’t know because we are all different. Don’t feel bad about ditching bad docs, there are many who will help you. After two years I am on my fourth GP and second rheumie and doing fine. I really wish you the best and remember to breathe, exercise, meditate, sleep, and eat healthy.

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Thank you!

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Hi and welcome

A bit more light reading for you whilst you await Rheumy appointment

healthunlocked.com/pmrgcauk...

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Doctors are pretty worthless unless the condition you suffer from is easily diagnosed. They all seem more concerned with their medical liability then the patent.

You are basically on your own to make your own medical decisions.

I suggest you stagger your intake of Prednisolone over the course of the day, so you are not so tired at its end.

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62 yr old female, diagnosed GCA May, 2017, USA, currently on 15 mg Pred

Mamaici1, I am so sorry that you are struggling. I remember that headache. It’s a beast! It hit me on a Thursday or Friday and I layed on the couch all weekend wondering if people go to the ER for headaches. I talked myself out of going because what if it was something and I was admited - I couldn't be admittted, I had 20 medical students to do orientation with on Monday, (So very stupid of me.) So I tried to sleep through it. On Monday after I did the thing with the students, I called my Internal Med doc and begged for an appointment. They sqeezed me in that afternoon. My doc’s Resident (Intern) saw me first and in addition to discussing the headache, I pointed out the artery that was beaded and sticking out at my temple. Doc saw me after Intern. Showed her the artery, too. But both focused on my elevated blood pressure. They did take blood, but even though both sed rate and c-reactive protein levels were high, connection not made. Two weeks later on a Monday, i’m sitting in my best friend’s office looking like a beat dog and she asks about the headache. I wail that i cannot get rid of it, pull my hair back and said “and what’s this?” showing her the beaded artery. Her eyes pop out of her head. She knows exactly what it is. She’s a Psychiatrist and had consulted on a patient with it so she recognized it. From that point on my care was fast-tracked and on Thursday of that same week a biopsy was done that confirmed GCA. My Rheumatologist explained that many Int Med docs will never see GCA in the lifetime of their practice so I’ve forgiven my Int Med doc for missing it. Fortunately, she’s seen it now and I’d bet my last dollar she won’t miss it again if presented. And all of this happened in a teaching hospital. So there’s no guarantees you’d get better treatment in the States. In fact, look how many of us are here in this forum that are from the States — and we are here because it’s the most educational, comprehensive site for GCA and PMR. Count you blessings for finding it. You’re in good hands now. PMRpro, Dorset Lady, and other Aunties (experts) won’t let you down.

Regarding my headache: I was started on Pred that Monday evening and in less than 24 hours it was at least 60% gone. I remember being amazed at how fast it went and that I didn’t have the need to reach for pain pills once on Pred. So my experience is a bit different than yours in this regard.

If they find that you do have GCA, yes, your life is changed. And in a pretty major way — and yet not. I still do everything I did before, just a bit differently. I may not do them as often as resting time has been incorporated. Like you, I work full time and also volunteer (for me its coloring and singing in a nursing home on Saturdays). The biggest lesson I had to learn was to SLOW DOWN. It’s ALL about listening to your body now, whether it’s pacing activities, dosing Pred, or managing fatigue. All very doable! Yes, it’s scary, but it doesn’t have to be a nightmare. Educating yourself will take away the fear.

Please take advantage of all this site and the other that PMRpro referenced offers. Look through past posts. You’ll get no better education or care anywhere else. You’ll soon discover that finding this place was one of the best blessings in your lifetime. at least I feel that way.

I hope you get your needed answers soon. Best wishes. Joy

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WOW! Thank you! I am up at 4:35 am (because I don't sleep anymore!) writing my second PMR/GCA related blog. (Watch this space) Thank you so much for your response and words of wisdom. It's that SLOW DOWN part, I keep tripping over!

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Laughing, it trips most of us. All. the. time. And oh, yeah - you’re going to feel like a mom with a newborn. Pred really messes with sleep. I’m 6 months in and my sleep patterns suck. Now I’m going to go read your blog. Started it during my lunch and got sidetacked. I have a feeling that between you and Uncle Mark (another member), you’re going to keep us entertained. That’s good - we like being entertained.

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Oh, cool, I'll have to find Uncle Mark! I am in desperate need of entertainment! Oh, is that the baby... must dash! xxx

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One other thing, are you taking the Prednisone at the same time with other meds? If so, stop and take it by itself. I think PMRpro has suggested a wait time of 2-3 hours before your next med as some, such as Calcium, will counteract with it. And I believe with GCA, taking the full dose is recommended in the morning with breakfast. The Aunties will correct this if I’m wrong.

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I had no idea.... I usually take them at breakfast, but with my Calcium and sometimes with my other vitamins and supplements. I shall make a change! Thank you! Well, 5:44 here in the UK... I'm off for Slumber Part II. Have a great day... where are you?

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I’m in Nebraska. Almost Midnight here and will say goodnight, too. Hoping we both get good zzzzzs. Sleep well.

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Calcium for lunch and dinner if you take pred in the morning...

One lady found that once she started taking one half of her calcium before bed she slept better.

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Thank you, you too!

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Final thought. Start low carb, no sugar diet today. Some recommend low salt, too. Too tired to explain. Just trust me. Someone will explain or you can find answers in past posts

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Already there Sista! Three weeks ago (when I was still seeing an Osteopath) I went wheat/carb free, sugar free, caffeine fine, alcohol free... I have added turmeric and ascorbic acid to my diet. I have lost 8 pounds and feel pretty good... with exception of obvious symptoms.

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