Trouble controlling pain

[Gillian55]

Just diagnosed with GCA last week, having trouble getting on top of the pain, on 50mg prednisolone, taking paracetamol and codeine, not sleeping and totally miserable, don't know what to do with myself.

[DorsetLady PMRGCAuk volunteer]

Hi Gillian,

Sorry to hear about your GCA. Maybe 50mg is not quite enough, you really should be noticing some difference by now, although for some people it does take a few day.

Paracetamol and codeine will do nothing for GCA, so waste of time taking them.

You need to get back to GP to discuss your situation, you may find an increase of 5mg is enough.

Unfortunately not sleeping is probably a side effect of the Pred, and although it’s very distressing and debilitating at the moment it will get better.

In the meanwhile have a read of the attached, it might help and also see if there are any support groups near you, just talking to someone who knows what you’re going through helps enormously especially at the beginning,

healthunlocked.com/pmrgcauk...

pmrgca.co.uk/groups/

[Rocketronzy in reply to DorsetLady]

Good advice Dorset.

Yes Gill go to the doctor and tell him exactly what you have told us see what he says. 🤨

[jinasc]

Sorry, but neither paracetamol or codeine will have any effect at all.

If it is the GCA symptoms that are still causing the pain, the dose is not high enough and you need to get back to you Rheumatologist pronto. Contact your GP and also telephone your Rhematologists Secretary and if you do not get to speak to him within an hour or so, then you must act swiftly like now.

Me, I had GCA for 5 years and in remission for coming up to 7 years.

Now is not the time to send you to this link to read up on it, but note the link and read everything you can. You need to learn about GCA and arm yourself with knowledge.

pmr-gca-northeast.org.uk/as...

British Society of Rheumatologists. (BSR). and BHPR Guidelines for the management of

giant cell arteritis

[tomhalil in reply to jinasc]

Remission for 7 years? Wow! How did you accomplish this? Do you have Temporal Arteritis or GCA? I know they are the same but with some people they don't have GCA in their Temple region, they have it in their Aorta and legs. I just learnt this recently so had to ask.

[jinasc in reply to tomhalil]

It was called Temporal Arteritis at first and then when they realised that it affected other major arteries, the name was changed to Giant Cell Arteritis. As I understand it is also classified as GCA +LVV Large Vessel Vasculitis - GCA is the biggest member of the Vasculitis club.

I did not accomplish anything, both GCA and PMR and other auto-immune illnesses, for which there is no known cause or cure to date, have minds of their own, they come when they want and go when they want and we just have to manage it and learn to live with a big change of lifestyle.

I stuck with pred, through thick and thin, refused any steroid sparing agent, reasoning that why should I add another drug which came with their own side effects and give my body extra work. That decision is a very personal one to make and I would never, ever advocate that anyone undertake that course of action. Your body, your decision always.

You can read my full story on this link: pmr-gca-northeast.org.uk/st...

Just remember, I know so much more now than I new then and more research has been undertaken over the past ten years.

On that site, under Useful Medical Information you can read the Guidelines on the Diagnosis and Treatment of GCA and then you will find out that about 2 years down the line with GCA you should have both Aorta and Pulmonary arteries checked out. I was extremely lucky with my medics they listened, I listened and it was 'joint decisions all the way. We were a threesome, My Consultant, my GP and me. The only way to go.

[PMRpro Ambassador in reply to tomhalil]

Most people with GCA go into remission sooner or later - up to 5 or 6 years is not uncommon though. And as jinasc says - it is what happens with these particular autoimmune disorders. There is nothing you can do that will influence it but be pateint and learn to live with and love pred!

[SheffieldJane]

I would be returning to my doctor to ask if a higher start dose of Prednisalone is indicated. You may find that the common start dose for GCA, of 60 mgs does the trick. There is no denying that the early days of these diseases can be really challenging, what with the sleeplessness and adjusting to the drugs. Try not to get into a panic, it will settle.

[Gillian55]

GP now thinks it's trigeminal neuralgia and changed meds. Thanks for replying, nice not to feel alone. Currently feeling numbness

[Hidden in reply to Gillian55]

Got it!

[SnazzyD]

Hello, these early days (weeks to be honest) can be grim. It does settle as your body becomes used to the high levels and you get into the groove of the different bodily sensations, symptoms and side effects. One thing Pred does do is make one a bit anxious and emotional which isn’t ideal for objective thinking, sleep or calmness. For this the afternoon nap reigns supreme in my opinion.

Normal pain killers did nothing for my GCA pain. Nowadays if I get any headache and go into a panic mode, I take a Paracetamol and it’s gets rid of the pain I know it’s isn't GCA.

[Hidden]

Hi Gillian55, Is the pain you speak of a headache? Neck ache? Pain in the shoulders and arms? All of the above? I had excruciating pain in all of the sites mentioned and was started on 40mg of Pred.. that dosage produced maybe 60% improvement, within 12 hours or so. The A&E doctor increased it to 60mg and that gave me a 95%-99% improvement within another 8 hours. I had been taking ibuprofen and paracetamol for the 19 days prior with NO relief at all. How long have have you been on the 50mg? Have you told the GP it is not working 100%?

[Gillian55 in reply to Hidden]

Hi, thanks for replying. Pain is in cheek and head. Dr has now diagnosed trigeminal neuralgia and changed meds as prednisolone wasn't helping although it did initially. Have been on it since last Thursday.

[Hidden in reply to Gillian55]

Ahhhhh, cool. Sorry if I missed that post. Pred head! Are you feeling better?

[PMRpro Ambassador]

Neither paracetamol nor co-codamol will manage GCA pain - thatis what the pred is for, If you haven't had an improvement at 50mg then you possibly need more and it is also possible that your doctor needs to admit you for a few days and give high dose infusions.

You HAVE seen a rheumatologist? This is not a game for GPs on their own. GCA and trigeminal neuralgia are too close to mess about with.

[simoncla in reply to PMRpro]

I don’t understand. Everyone says on here that co-codamol doesn’t touch GCA pain. Before I was diagnosed prescription co-cocodamol cleared my symptoms. The blood test and temporal biopsy showed I had GCA and when I was put on 60mg Pred the pain eased as did all my other problems. Over the counter co-codamol didn’t work, however. Was I just lucky that co-codamol cleared my symptoms.

Going over my recent problems. My flu like symptoms have cleared up but I am still getting the trembling eye and eye pain which co-codamol ease.

[PMRpro Ambassador in reply to simoncla]

You are the frst person I have heard say co-codamol helped GCA. I don't have an answer though. There is no real reason why it would help - it isn't an antiinflammatory at all.

[simoncla in reply to PMRpro]

I don’t understand either. It must be GCA though as all the symptoms, blood markers and biopsy pointed to it. Just wish it would all clear away.

[Rocketronzy]

Beginning to think prednisone is one of the best drugs doctors have in there lockers. But seem afraid to use it to it full potential.

[Insight329 in reply to Rocketronzy]

We’re sure lucky to have it, aren’t we? Feeling better, Ronzy?

[Rocketronzy in reply to Insight329]

Feeling quite a bit better thanks up it to 5 now took it all at 12 last night. Had a good night but not too sure about evening 🤔 might split it tonight.

[Stella3]

So sorry you are still having pain. I was diagnosed last summer and started on 60mg of prednisone. Also I took sleeping pills, till my dose of prednisone was gradually reduced. I understand how the prednisone must be affecting you. Mention your pain and your sleeplessness to your doctor. Perhaps he/she should up your dose of prednisone and give you something to help you sleep.

[Gillian55 in reply to Stella3]

Thanks for your reply, gp has decided it may be trigeminal neuralgia now, stopped prednisolone and put me on carbamazepine which has helped the pain but got horrible side effects!

[Telian]

Coming in late on this but sorry to hear you're suffering so. Won't add much more as agree with what's already been said except that I only slept for 2 hours for a long time on Prednisolone, started at 50mg and had a very slow reduction to now on 5mg after 4 years.

For the sleeplessness I was given Amitriptyline just 10mg at night and it worked a treat, was able to stop it when I reached 4mg pred. and was okay with sleeping - didn't have to taper to get off it as I know some do. I never sleep more than 5/6 hours even now so accept that.

Good luck Gillian

[Gillian55 in reply to Telian]

Thanks for your reply, gp has stopped prednisolone and put me on carbamazepine for the pain and decided it's trigeminal neuralgia.

[Telian]

That is painful my OH has that - he's been taking Amitriptyline for over 20 years now as pain comes back if he tries to stop them. Hope the diagnosis is correct and the treatment works.

Best wishes

PS I sent an earlier reply but it has completely disappeared!

[Gillian55 in reply to Telian]

Thank you, carbamazepine seems to be helping but I don't like the side effects!

[Telian]

That's not good, I took Amitriplyline for my sleeplessness & euphoria and didn't like the side effects either, awful taste and felt drugged up all the time. Poor you...