To see or not to see that is the question.

[Classicmichael]

Had worrying temple pains yesterday, this was followed by a two day flair up of PMR with really bad hip,back, lag and knee pains.

I spent several hours mulling over what to do and then decided to gulp down another 25 mg of pred taking the dose to 40 mg.

Today I woke up pain free and realise that this was not a headache but very likely GCA related.

I have struggled with PMR and GCA for two years now and have only seen a rheumi twice in all that time plus a visit to the prof for diognosis because my hospital had,nt a clue. Since seeing the prof l have virtually self medicated and self managed.

I am glad I took the loading dose last night but not sure what to do today l have taken 15 mg and feel fine but do l have to take more today?... in order to suppress things?

Please don't suggest going to the Hospital or ringing the Doctors as l don,t feel l have any support there either.

I have family arriving on a flying visit from Spain today so may not be able to get back Very promptly but any advice would be greatly appreciated.

[lfu2]

Hi Classicmichael,

Number 1... control the pain. Everything else is secondary.... you cannot function properly if you are in pain. My consultant gave me this advice early on in my treatment.... 'if you have a flare, or infection etc. increase the steroids for 7 days, then drop back to the original dosage'. I am in the middle of a flare now and have upped my steroids from 10mg to 30mg... it helps; due to drop back to 10mg on Monday. I had an emergency appointment with consultant last Friday to double check (and for reassurance), and he repeated the advice. Good luck

Hope this helps.

[PMRpro Ambassador]

Self-medication with GCA really isn't recommended Mike - apart from anything else you need a steady supply of large amounts of pred!

Where are you? There may be useful sort of rheumy near-ish that someone knows of. I do understand your feelings about your local lot - except the staff will have changed since then and may include educated ones.

My rheumy here in Italy put me back to 15mg from 9mg when there were suspicions of GCA and expressed the opinion at the time that unless you had visual symptoms that should be enough, the very high doses are to avoid risk to vision. The single dose yesterday won't have been enough if it really is GCA but it is entirely possible it was coincidence.

[Celtic PMRGCAuk volunteer]

Mike, if it is a definite PMR/GCA flare then it is unlikely that just taking 40mg for one day followed by returning to 15mg on the next will maintain the improvement. Personally, I would not be happy self-medicating at these high doses - you really do need to be under the care of a good rheumatologist - there must be another rheumy you can approach for a second opinion not too far away from your local hospital? In the meantime, what to do now? You now need to find the right dose to maintain the improvement following yesterday's hike to 40mg. Perhaps taking 30mgs today, seeing how you are tomorrow and, if ok, then taking 20mg the next day and staying there for a few days before reducing to 17.5 and remaining there for a couple of weeks - just above the 15mg dose where the symptoms reappeared. Good luck and I do hope you continue to feel better - don't overdo things with the visiting family today though.

[DorsetLady PMRGCAuk volunteer]

Hi Classicmike,

Get where you are coming from having suffered from GCA for 3 years. Suggest you stay on higher dose for a few days to stabilise everything, but also agree with PMRPro it could just have been headache or you getting stressed about visitors. Then go back down to 15 mg, but be aware that you might feel a bit grotty (for want of a better word) for a few days. Hope everything goes ok and you enjoy your visitors. But just be aware of headaches and don't take any unnecessary risks. DL

[Classicmichael]

THANKS TO ALL OF YOU, will be taking 30 mg today and gradually reducing back again as advised as I think it was a GCA flare.

Regarding getting a referral to a decent Rheumatologist I am in Suffolk and if anyone out there can recommend someone who understands this illness and who is personable I would be pleased to hear from them as I am yet to find one who l can have any faith in.

What a lifeline this site is especially as we are heading into the weekend and the only option is A&E.

My visitors have just left and I have had a better day with only a gentle pain in my temples remaining just to keep me on my toes.

Thanks to all you lovely people.

Mike

[Old_Bedfordian in reply to Classicmichael]

Hi Mike, sorry I live in Bedford otherwise I'd pop over for a natter!

The temple pain that I have to bear is now what you might describe as gentle, but increases with stress and anxiety. It has not returned to the extremely high level of the original pain, that was unbearable, but lasted only for about two hours before dropping to a more moderate and bearable level. 40mg of pred for five days and then again for five days with a gap of three days (bad GP care) took it to this constant level of between 20 and 50% of the original.

I am interested in whether you had any scalp tenderness before your symptoms began. I have read that this is indiciative of the disease, whether it is an early warning or a continuous one, I would like to know. Certainly the scalp tenderness (the week before my temple pain began) happened only the once, so far.

I might ask the question generally about this, but did you have any unusual scalp tenderness when combing your hair early on in your GCA history?

Dave

[PMRpro Ambassador in reply to Old_Bedfordian]

I had a few weeks of scalp pain, brushing hair was awful, but it disappeared even without being on pred. I was only ever diagnosed with PMR and 15mg was a miracle but I had had thigh and bicep claudication and jaw pain too.

I met a couple of the doctors heavily involved in the NE support group who both said they had never heard of short-lived scalp pain or jaw pain. Intriguingly I have heard several people saying they have experienced this over the last few months.

[Old_Bedfordian in reply to PMRpro]

Thanks for this PMRpro, I am going to post the question, to see if any others have had the tender scalp.

[Classicmichael in reply to Old_Bedfordian]

Hi Dave, my GCA started with constant headaches, and ended up with a terrible fever.

I woke up feeling dreadful and my bed sheets were soaked as I was sweating from head to foot.

The headache culminated in an agonising pain in my temples and this felt quite different and really frightening and ended up with my wife telephoning the Doctors surgery.

Fortunately my Doctor recognised the symptoms of GCA and immediately started me on 60mg of prednisolone and took some blood which was fast tracked for results and he telephoned me later that day to confirm the diognosis after seeing very high levels in. My inflammatory markers.

A few hours after taking the steroids my symptoms subsided and the temple pain disappeared.

To answer your question Dave I have not experienced scalp tenderness however I do have problems in my jaw with numbness in my teeth, a bit like leaving the dentist.

I share your concerns regarding temple pain and certainly this recent flair had me worried about my sight.

My motto now is its better to be safe than sorry.

Mike

[Old_Bedfordian in reply to Classicmichael]

Well, thanks Mike, the sweating is familiar, and the jaw pain when talking too much (a nutural problem with me). The fast racking for the blood is very interesting, and seems key from what I have read up on it all. So very informative, thanks.