Newbie possibly with GCA

[Pippah45]

Hi everyone - and best wishes to all. Very briefly - I was diagnosed Hypothyroid quite a few years ago and have been treating with Natural Dessicated Thyroid - I felt really ill on Levothyroxine. Last year discovered it was the auto-immune (hashimoto's) variety. In the meantime my younger brother had a narrow escape with his eyesight and Temporal Arteritis. My older sister was diagnosed with PMR last year and GCA a couple of weeks ago. She flagged this up for my and as I had been suffering a headache for 2 weeks when I showed up at the GP last Monday and was whacked on 60 prednisolone. So far no one has come up with the definitive diagnosis and I feel I could be one of the very lucky ones and that it might be a false alarm. My CRP is just over range and erythrocytes in the mid range area. Another blood test tomorrow.

If I am correct in my reading of the brilliant book - time is running out for anyone to find any Giant Cells left - and I would rather reduce the prednisolone if possible before I am caught in that trap. I am very very aware that IF I do have GCA it is necessary but if I am lucky.....? What then. GP has said I can reduce to 40 until I can see a rheumatologist. The steroids sent my BP through the roof so medication for that too and all the normal side effects of appetite - bad sleeping and so on.

I am hoping that the headaches were due to some foolish physical exertion - and nothing else as I am clear at the moment. I have always had headaches to some extent and went through 20 odd years of severe Migraines following a riding accident until I discovered cranial osteopathy cured them for me.

Any insights would be very welcome - thank you in advance.

[Hidden]

I am only A pmr person. But the first question i would ask is did the pred help the symptoms? I know a lot people dont have raised crp/exr for pmr... But i M not sure re gca. The symptoms should be the main way to dx if a biopsy/u/scan etc hasnt been done. If you are up at 60 /40 the inflammation is controlled so it hard for them to find the giant cells. Temporal arteritis and giant cell arteritis are both part if the same condition. Eyesight can be list with gca too. You have 2 family members with it. I knew a mother and son who had TA too and lost sight in one eye. I am sure a gca person is writing as i type or will be along soon. Heres is something you could have a chew on.

academic.oup.com/rheumatolo...

[Pippah45 in reply to Hidden]

Thank you Poopadoop, I see what you are saying and the optimist in me wants to believe the headache symptom was just a result of the physical strain I put myself under. The realist in me wants the answer to keep me safe! I have always been proactive about my healthcare and particularly so with the Hypothyroidism as my case "doesn't fit the current guidelines very well!". I would really like this uncertainty to go away.

[Hidden in reply to Pippah45]

I will keep my fingers crossed for your positive outcome. But must mention that autoimmune condition like to travel.in pairs and groups. I have hypothyroidism, diabetes and PMR supping at tbe cup of my immune system.🤞🤞🤞

[PMRpro Ambassador]

What is your doctor messing about at? He should have been on the phone to the rheumatology department getting you an EMERGENCY appointment. Which goes above public holidays ...

The only way you can have a definitive diagnosis is a biopsy or an ultrasound done asap, waiting for the mills of god to turn up a routine appointment in a few months won't help that. "Just" a headache is a bit vague as symptoms of GCA to justify putting a patient on 60mg pred - most diagnoses are made on clinical symptoms and they would want more than that. I can imagine most rheumatologists being a bit irate at meeting a patient whose GP decided they had GCA on that alone.

Can't help a lot with the insomnia but you can help the weight gain and appetite problems by cutting your carb intake drastically - no processed or simple carbs and sugar for a basis and restricted fruit and root veg as well.

[Pippah45 in reply to PMRpro]

Thank you PMRpro - yes I had "got" that emergency rheumy is the way to go just don't seem to have managed it! I asked at reception this morning if the referral letter had appeared and she said probably two weeks - so I replied I didn't have days never mind weeks! Even being willing to pay doesn't seem to get me anywhere!

[PMRpro Ambassador in reply to Pippah45]

Being willing to pay jolly well should get you somewhere. You can contact the private rheumy yourself and if you are lucky they would put you on their NHS list.

Where are you?

[Pippah45 in reply to PMRpro]

I will try! It just feels really important to my future to find out asap. I am in Lincolnshire - Lincoln is nearest - Grimsby then Boston etc.

[PMRpro Ambassador in reply to Pippah45]

Google private rheumatologists near Lincoln. See what you find. I don't know any near you - post on the forum and ask, maybe someone can recommend theirs.

[Pippah45 in reply to Pippah45]

That didn't work no private appointments till late next week!

[DorsetLady PMRGCAuk volunteer]

As others have said, you need to see a Rheumy ASAP - and ‘just” headaches without any other symptoms are a bit vague. I can well understand why your GP did this, particularly with family history, but he’s only done half a job really.

Not much you can do about insomnia really - at 60mg it’s par for the course. I ended up, at GPs suggestion taking Nytol every 3rd or 4th night, just to break the cycle but not too regularly to get addicted. It will improve as you reduce Pred.

[Hellyowl]

I have GCA MY GP acted quickly an put me on 60mg straight away. I saw Rhuemy a couple days later and she said that GP did the right thing although there was now no point doing a biopsy. Although she would if I insisted. As all surgery carries some risk I declined. There has never been any doubt I have GCA despite no biopsy or ultrasound. Good luck with your journey

[Pippah45 in reply to Hellyowl]

Would it be rude to ask how come the deduction of "never any doubt you have GCA"? I am more than happy to avoid the biopsy but I would like to know for certain.

If I don't need to take steroids then the insomnia won't be a problem but I am quite relaxed about that anyway except I would rather not have it if you see what I mean.

I am very aware that so many of you have far more challenges than my current level so hope I don't sound too pathetic.

[Hellyowl in reply to Pippah45]

I had been ill with flu like symptoms for weeks and had a stiff neck, as I had a long commute I put it down to driving and tiredness. Then my jaw seized up and I was virtually sucking soup up a straw (I made an appointment for the dentist because I had a cracked tooth and thought it was that), I had pain in my left temple but not so bad I couldn't cope with it, I thought it was from the tooth. People at work were commenting I was going a strange grey colour when I normally had rosy cheeks, my OH made me go to GP and she took bloods but then didn't even wait for the result, phoned me next day to collect 60 mg steroids then phoned throughout day, after about 6 hours I began to respond. Within 48 hours I was back at work. My bloods confirmed all the raised levels associated with GCA.

[Pippah45 in reply to Hellyowl]

Ah yes the raised bloods - I only have one slightly raised marker which is par for the course with Hashimoto's anyway. The other marker is normal (ERSR).

[Hellyowl]

Also, I rolled with the insomnia. Got up and did pleasurable things. Reading, radio, baking. Once the pred dropped I did sleep. Strangely, I have had lifelong insomnia and now my pred is low I am sleeping the night through for the first time in my life.

[Carrollee]

Hi. I agree with the others you should be fast tracked if GCA is suspected. My doc whacked me up to 60 (was on 15 for pmr) the morning I phoned and saw me that afternoon for a blood test, while i was there he phoned the rheumatologist for advice. He said 40 would be enough as no obvious eye probs just jaw pain/claudication. I was seen about a week later at the hospital and a biopsy 10days later. I have been seen every 6 months since then for check ups and ultra sounds. Now 4 years down the line and on 5 mg. All the best cc 🤗

[Pippah45]

Thank you - seems I am not getting anywhere fast!

[Hellyowl]

I haven't had check ups for the last year (my 3rd year) but I have been reducing dead, dead slow and I am seeing Endocrinologist in May because my adrenals are possibly not working. My 3rd time at 4mg and no flare up this time, beginning to get over the mountain but I have had to learn patience.

[Pippah45]

I am finally scheduled for next Friday for the Biopsy - so much for the two week time frame it will be almost three - such is life.

[Pippah45]

Would any kind person give me the run down on the Biopsy - one of the disadvantages of living alone with three dogs is going to make it a bit of a strange day on Friday. I hope I have my transport sorted - it's a 40 mile trip - but would like to know how groggy I might feel and how long the procedure might take? I like to be prepared as possible. Thank you.

[PMRpro Ambassador in reply to Pippah45]

I suggest you post this as a new thread - otherwise people are unlikely to see it. I can't really help!!

[PMRpro Ambassador in reply to PMRpro]

Though this might do as a start:

healthunlocked.com/pmrgcauk...