Up the creek without a paddle...

[sallyboot]

Hello everyone, this is my first post, so be gentle with me!

I am feeling confused and worried, and very scared. I have all the symptoms of PMR/GCA I have read about here, but my doctor feels he has to wait for a diagnosis from a consultant. I saw a rheumatologist two weeks ago, and received a copy of her letter on Friday, in which she recommends I reduce the Prednisolone (currently 10mg per day, as that is all I can tolerate) over the next two weeks - to nothing, and then stay off it. This is because I have experienced depression when I first took it, but have adjusted to that now, and am very afraid of the pain returning. No other pain relief has been mentioned, other than Ibuprofen which I am allergic to.

I have just had a very bad couple of days, when I actually took more Pred, as the pain was so bad, especially in my head. I am very concerned about the possibility of losing my sight, as my eyes are extremely sore and I cannot open them in the mornings. The doctor told me to see my optician for a glaucoma test, but otherwise offered nothing.

I am beginning to realise that doctors don't seem to know very much about this disease, which makes it harder to communicate with them. That, and the fact that I have to wait 3 weeks for an appointment to see someone, means that I have been left trying to cope with a very difficult set of symptoms on my own. Oh, and I also have just been diagnosed with T2 diabetes, and blithely told to lose weight!

Has anyone else had a similar experience? I would so love to not have to feel so alone while feeling so ill - and looking so well!

[PMRpro Ambassador]

Hum - very helpful n the part of the rheumy!!!

Can you tell us more about your symptoms? Do you have any that are typical of GCA? And whereabouts in the UK are you?

[sallyboot in reply to PMRpro]

Hi - thanks for the reply.

I have scalp tenderness, swollen arteries over the ear, mainly left side, and am swollen both sides of neck. I have constant sense of pressure around my head, and occasional bouts of excruciating pain on the left side of head. This has been alleviated by taking the Pred coupled with Cocodamol at night. I am very worried about trying to reduce further at the moment, without any other form of pain relief. Cocodamol alone doesn't help much and I can't take it during the day as it makes me dizzy. She didn't really look at my head, but put me through the range of motion tests and fired a lot of questions at me, most of which my doctor has already asked. The letter really upset me, as the tone of it suggest she doesn't believe me, and she says 'this is a little odd and it is unusual to get depressive symptoms on low dose steroids, much more common on 40mg and above'.

I wondered if anyone else has experienced depression while on low dosage?

I live in Somerset.

[PMRpro Ambassador in reply to sallyboot]

Depressive mood is also a part of PMR and GCA - and most other autoimmune disease too and taking any dose of pred could affect someone sensitive - just because she hasn't seen it before it doesn't mean it doesn't happen.

Are you within striking distance of Bristol or the Royal National Hospital for Rheumatic diseases at Bath? I think Bristol has a fast-track GCA referral - Bath definitely does:

rnhrd.nhs.uk/our-services/r...

(look under Giant cell arteritis for a link to their flow chart for referral)

rnhrd.nhs.uk/uploads/files/...

I'm assuming you haven't been to either of these as it took so long.

What you describe is certainly typical of GCA and you need an expert opinion. The person you saw doesn't appear to take you seriously - so I would insist my GP phone the Bath hospital for advice at the very least.

[sallyboot in reply to PMRpro]

The GP referred me to Musgrove because he trained there, and contacted them when he was unsure about my symptoms, as he is a trainee GP. I am going to see another older, more experienced doctor in the practice, but have to wait 3 weeks for that. I shall ask him about speaking to Bath or Bristol, but it is too late for the fast track, I think, as I first went in May. He did refer me for an emergency appointment - which took 4 weeks! And a further 4 weeks for a head CT scan. And then 2 weeks for the consultant to write to the GP. Hope my head doesn't explode before that!

Thanks very much for your replies - it just helps to know someone who knows how I feel.

[PMRpro Ambassador in reply to sallyboot]

If you develop ANY visual symptoms don't wait for that 3 weeks - you need to see a rheumy IMMEDIATELY.

I don't think it is too late for fast-track if you have PMR symptoms that then progress to GCA symptoms. And in GCA there really is not time to mess about. You have already been badly messed about - and I know someone else who had similar treatment, I suspect at Taunton. The rheumy she saw in the end at another hospital was not happy at her treatment.

A head CT scan will not diagnose GCA - if it did they would not use the biopsy option. At Bristol and probably at Bath they would use ultrasound - which is also diagnostic.

[sallyboot in reply to PMRpro]

Thanks, I did not realise that. She originally wanted an MRI, but I am claustrophobic, so hence the CT scan. I don't understand the difference, as all this is new to me and I have never had any procedures before, apart from routine X-rays. A biopsy was not even mentioned, and she didn't examine my head, just muscle function. I thought the Ct scan might be because she suspects something else, but she didn't say what.

I shall ask about ultrasound.

[PMRpro Ambassador in reply to sallyboot]

U/S isn't generally available - there has to be someone trained and many of them are the ones who learned for the TABUL study which showed it is as good as biopsy for confirming GCA. There are training courses being run now though as it is hoped to roll it out nationwide.

MRI wouldn't show much either. Funny - when I was seen by a hospital consultant the only thing they were interested in was headache symptoms. I didn't have any at the time - I had had scalp pain some time before and jaw claudication but they didn't ask the right questions!!

[sallyboot in reply to PMRpro]

Do you think I should still go for the CT scan, in case there might be something else? The thought of a two hour bus journey in very hot weather is not appealing, when I already feel ill, and heat makes it worse.

There is so much to learn about this, and my brain already hurts! I innocently thought going to a specialist meant that someone would know what was wrong, but I realise I need to educate myself about this - just when my brain has turned to mashed potato!

Have already learned a lot from you - I am most grateful.

[PMRpro Ambassador in reply to sallyboot]

I have to admit - the offer of a CT scan always feels reassuring as it removes other possibilities. Does it HAVE to be the bus? No mates who'd do a day out? I would. It does annoy me when doctors in rural areas don't stop to think about what they are asking the patient to do!

[sallyboot in reply to PMRpro]

There is not much choice of hospital, as Bath and Bristol are both longer journeys. It's not so much the travel, but the heat, which I don't do well in. Hoping for a cold spell!

Thanks so much for your insight, it really helped, as yesterday was a very bad day. Feeling better today, so feel I can cope.

[Hidden in reply to sallyboot]

I was diadnosed at Musgrove Nov 16 with PMR/GCA and was admitted for 2 weeks as Crp was 258. Started me on 40mg Pred. Due to consultant wanting me to be off steroids asap I have had 2 flares. Not sure who you have been referred to and I don't want to name names so if you need any help message me. Rowena

[sallyboot in reply to Hidden]

Thanks rlake, will message you later, have to go out now.

[sallyboot in reply to sallyboot]

Hi Rowena,

I can't message you at the moment as I have tried to get the email I need, but it won't resend and I can't message without it. Am having trouble with my computer, so don't know if it is that, or this site, and I don't feel up to dealing with it at the mo. Will try again later.

Thanks for the offer, it would really help.

[SheffieldJane]

Hi Sally boot and welcome to the site. I hope you find it as helpful as I do. It has been like having my hand held for over a year.I am glad to see that PMRpro has you in hand.

Just a word about depression. I was very depressed prior to diagnosis, it is not a good state to be in to get medics to take you seriously. Constant sickening pain definitely contributes to depressive thoughts. Once I was given the diagnosis of PMR my depression started to lift, I had been feeling so guilty about doing so little and sleeping in the daytime when all my tests came back clear, so I was a hypochondriac!!! I had to train myself not to think miserable thoughts that sent me on a downward spiral, because that had become a habit. I was put on 20 mgs and experienced miraculous relief from pain and dreadful stiffness within 48 hours. I was also on a bit of a giddy high which didn't last and was a lovely change. Pred does have side effects but I've managed to deal with them as they come along. I did go through a phase of having a hateful temper but the awful depression did not come back. I have reduced to 7 mgs using the dead slow method advised here and I am still experiencing pretty even moods thankfully.

Why do you say that you cannot tolerate more than 10 mgs of Prednisone?

What happens?

To my mind you have never taken enough to experience proper relief. If you do indeed have GCA the main treatment is a high dose of Pred. You need to be prepared for that and perhaps make it your friend?

We all feel scared about this sometimes but we are moving in the right direction with the appropriate treatment. Good luck and let us know what happens to you. ( auto correct keeps messing with your name, sorry).

[sallyboot in reply to SheffieldJane]

Hi SheffieldJane

Thanks for the reply. 15mg of Prednisolone made the pain much worse initially, as well as causing depression, so after a week of feeling totally wretched, the doc and I decided to try 10mg, which I now seem able to cope with. Muscle pain relieved now, joint pain has gone, but have very bad days with the head pain. When I next see the doctor I shall ask about 15mg again, but the problem is the rheumatologist has said I should come off it completely in two weeks. I feel this is too fast, and no one has suggested what to do about the pain. I keep being caught in this vicious circle, where they say Ibuprofen and I stay I can't tolerate it, and nothing else is offered. I know there are other painkillers which might help, but as I have been feeling so ill, find it difficult to insist. Shall have to try harder!

Have been coping with the depression, but went into a slump on Friday, when I got the copy of the specialist's letter, which shows she didn't believe me about the joint and muscle pain, as I have full range of motion. Totally ignored the fact that this is due to cortisone! Without it, the pain comes back PDQ, so I remember to take the tablet (where has my memory gone!) I feel like I am being treated like a fussy old fool, so reading other people's experiences here has helped a lot.

Am feeling much better this morning - might even wash up!

[PMRpro Ambassador in reply to sallyboot]

If you have either PMR or GCA then there is no way you will come off pred in 2 weeks - I don't care what any rheumatologist thinks or says. Which is why I'm suggesting heading for a hospital that might have some idea what they are doing. You may have a hospital across the road - but if they either don't take you seriously/believe you or don't know what they are doing they are useless.

And if it were to be GCA - she is putting your sight at risk.

[sallyboot in reply to PMRpro]

I am going to a different GP, who I hope might be a bit more clued-up about this. Shall go armed with the info you have given me, and ask to be referred to another rheumatologist.

[CT-5012 in reply to sallyboot]

Hi sallyboot,

Advice given to me by a friend (nurse in NHS) sometimes you have to be persistent to the point of being annoying but nicely and with a smile!

Hope you get all the help you need and quickly.

All good wishes.

[sallyboot in reply to CT-5012]

Thanks for the encouragement. This has gone on for three months now, and I feel worn out sometimes. Being on here has helped a lot, knowing I am not the only one experiencing the frustrations and setbacks.

Hope you are having a good day.

Best wishes

[PMRpro Ambassador in reply to sallyboot]

I missed out on the GP who knew what they were doing with PMR - given the option I would always have a good shop round the practice again. But the good one had had 2 or 3 lots of maternity leave and only worked part time anyway so was next to impossible to see. Now I have Hobson's choice!

[sallyboot in reply to PMRpro]

The GP I have been seeing is in training, so I think he has no experience with this, so doesn't really understand about the pain. I am seeing another Dr in the practice in 2 weeks, and there are several others, so I suppose I could try all of them! Would keep my fingers crossed - if I could!

[SheffieldJane]

You really know how to celebrate washing up pah!

Anyone would "slump" if they felt that they were being dismissed. I would be tempted to seek a second opinion from another Rheumatologist. Worryingly coming off Pred after two weeks will leave you stuck without the only drug that really helps if it is PMR/GCA. However there may not be additional withdrawal problems because you have only taken them for 2 weeks.Take Rowena up on her offer of recommendations for Rheumatologists in your area.

I am in Bath at the moment, what a great place! (Husband on business, me on shopping and sightseeing,) over done it as usual.

I have found Tramadol to be an effective painkiller for non PMR pain. Only Pred relieves PMR. All anti- inflammatories are harsh on the stomach.

I hope you get out of this stuck place very soon.

[sallyboot in reply to SheffieldJane]

Thanks, I am feeling better today. Hope you enjoy Bath - good weather for it!

[Rugger]

Nothing to add to all the good advice you've received from the others, except to say that sometimes, I can't open my eyes properly as they feel so sore and dry. Your GP could prescribe you some drops for 'dry eyes', but I buy mine for under £1 at Home Bargains! Dry eye drops or Moisturising eye drops and you can use them as often as you like. Mine contain Sodium Hyaluronate, which is in the prescribed drops. Ask your optician's opinion.

[sallyboot in reply to Rugger]

Thanks for the reply. I have found some drops which work overnight, so that problem is better, at least.

[Islandgirl50]

Dear Sallyboot , gosh what a dreadful time you are having . When I was first diagnosed with Pmr and GCA , I WASPUT ONTO 25 mg prednisalone immediately, had to see opthomologist immediately ( next day ). Would normally take months to get to see him unless GCA is suspected . Day after that I was having a biopsy , positive result ,immediately then put onto 65 mg prednisalone , saw rhuemy within weeks ( phone call of urgency from Gp ) put then onto 20 mg methotrexate ( weekly) that was 14 months ago , I am now down to 6 mg of pred, still on same dose of methotrexate .Not an easy journey , but saved my sight , I should still be trying to reduce 1 mg predict monthly , but have pain around temples sometimes, so am staying on 6 mg until I see rheumy in September .i have just had one cataract removed , all good ..I don't expect to get off these drugs for a few more years yet , it just can't be rushed ,sorry to rave on , but sometimes one needs to hear someone else's journey to compare . ( ps I live in Australia , )

Please insist on more care , or go to another dr and ask for a referral to ophthalmologist, this is your sight that is in danger , good luck ,

[sallyboot in reply to Islandgirl50]

Hi Islandgirl50,

thanks for the reply. The problem is that I have not had a diagnosis of GCA. As I also have diabetes, I think there is some doubt about what is causing the eye problems. Had an eye check on Friday, and I have lost some peripheral vision in left eye, so optician is writing to my GP, so I might be referred to an ophthalmologist. Having a head scan tomorrow, so I might know something eventually. It just seems to take so long.

I was upset because the rheumy I saw wants me to stop taking Prednisolone as I had an adverse reaction to it. But no other pain relief offered - hence the title of my post!

There seems to be such lack of knowledge about this condition, it is alarming when health professionals don't know about it. Not exactly confidence inducing!

I am going to see another GP next week, so am hoping he might have a bit more experience.

I am glad things worked out for you, and that your sight is OK. Do you have people to talk to about this? I think this site helps a lot, as you say, it helps to know about other people's experiences with this disease. Nice to hear from Australia- stay in touch!

[Islandgirl50 in reply to sallyboot]

Yes sallyboot, one other lady I used to work with has PMR, but not GCA, she has been having a tough time tho, we meet every few weeks , share time and what's happening with us over a coffee and cake . But this site saved my sanity I am sure when I was first diagnosed . I hope all works out well for you also . Love and blessings from Australia 🌹