Two weeks since start of flare & still in pain

[strawclutching]

Hi folks. I'd got down to 7mgs of Pred with the aid of Actemra (started 5 months ago). After 2 weeks on 7mgs, pains returned - same pattern & symptoms as first flare. ESR had jumped from 2 to 17 between December and February. Rheumy said to stick with the taper, pains could be something else. Three days later pains got worse, couldn't do much but sit in the chair so upped the Pred from 7mgs to 13mgs for 10 days then dropped to 11mgs. Pain hadn't entirely gone by the time I dropped but then it got worse at 11mgs. After a week on 11mgs went up to 15mgs where I've been for the last 10 days. Spoke to the rheumy 2 days ago and confessed. She wasn't happy, told me to reduce by 2 mgs fortnightly starting end of next week. Insisted I must get down to 3 mgs by the time my year is up with Actemra which will be October again.

I have monthly blood tests organised by the GP surgery, but lately they have been omitting items from the test list. This month, they refused a blood test saying I wasn't due until end of May. A few econsults later and still they weren't checking my notes or clinical letters so I complained to the Practice Manager. She said she wasn't happy about my tone. Eventually got a blood test scheduled next week. No apology however, and I get the impression I'm known as the pain in the neck.

I know it's almost impossible to tell, but does anyone think the 2 mgs fortnightly reduction will be manageable from 15 mgs down?

[PMRpro Ambassador]

No, and your rheumy obviously doesn't understand the use of Actemra: in the clinical trials only about half of patients were able to get off pred entirely in a year, It says that quite clearly in the documentation.

GCA has at least 3 known mechanisms that create the inflammation and Actemra only works for one, the IL-6 mediated one. If your GCA involves the other two, you need pred to manage them as long as they are active. Actemra does NOT have any influence on the underlying disease, it stops the IL-6 being able to work by occupying the receptors that it needs to attach to to have its effect. The hope is that the mechanism that produces the IL-6 will fade away and it does seem to so for the half of patients where IL-6 is the only mechanism they are able to get off pred. That doesn't mean it is permanent though and quite a few relapse when Actemra is removed. And the others still need pred.

A follow-up study found patients really need Actemra for up to 3 years - a more normal expected duration of GCA management.

"She said she wasn't happy about my tone" - and I wouldn't be happy about hers either. The patient is left high and dry. I'm staying here.

[strawclutching in reply to PMRpro]

Thanks PMRpro. I was thinking along the same lines but just wanted to hear from your expert knowledge. I'm going to take it as slowly as it needs to go by using blood work & pain levels to guide. The GP practice & their attitude is another matter I'll deal with when I'm feeling better.

[PMRpro Ambassador in reply to strawclutching]

I was once asked to leave a practice - not in quite so many words it was "Why do you stay here?", The answer was "Because my husband, god help him, thinks you are ok." The doctor in question had given 3 lots of antibiotics for a persistent cough and then assumed it must be asthma as the peak flow was reduced. Luckily 3 days later he coughed up blood, luckier still he went to work and mentioned it to a colleague - who did what the GP should have done, sent him for an x-ray. That showed the tumour that was causing the cough and reducing the peak flow and the colleagues sprang into action. This doctor thought this process was my "fault" and took it out on me. He also informed me HE saw no signs my daughter was depressed at the same time as inferring I should leave. I did, went to the local paed psych unit she had been under recently and saw her doctor there. Who agreed with me and told me where to go - the practice in the other village! Best move I ever made, And OH followed us a few months later when MY doctor visited the house to check on him more than his own did.

[strawclutching in reply to PMRpro]

So glad it worked out for you in the end. Why they think it's ok to keep failing with patients like us is beyond me. I'll try moving practices, but with so many co-morbidities and my age, etc I doubt anyone will be willing to take me on.

[Suffererc in reply to strawclutching]

My family was told to find alternative surgery after a solicitor asked for my daughters records and they were told her primary care was at fault.

[123-go]

Another resounding NO from me! You’ve heard from the expert with the scientific knowledge but I want to add my support for you regarding the practice manager’s response to your ‘tone’. Perhaps she would like your chronic systemic disease and your pain! Be that pain in the neck 💪!x

[strawclutching in reply to 123-go]

Thanks for that 123-go. I'm also juggling type 1 diabetes of 41 years, worsened by all the drugs. When I ring up with a UTI, they say 'Just pop down & pick up a bottle, then pop it down again when it's ready.' If only they knew the effort involved in 'just popping here & there' these days, they might try and make things simpler.

[PMRpro Ambassador in reply to strawclutching]

Well a good start would be having a stock of said bottles at home - saves one journey.

[strawclutching in reply to PMRpro]

I had a spare green topped one but they said it had to be a red topped one with powder in the bottom, and they only give those out when needed.

[piglette in reply to strawclutching]

That ‘pop in’ attitude always annoys me too. Like just pop in and buy some milk! No concept or empathy about why you need to ‘pop in’.

[strawclutching in reply to piglette]

If we were the Jetsons, that silly word might be justified. 😂

[PMRpro Ambassador in reply to piglette]

I had the fight with the Italian rheumy here. I had developed a UTI and am on Actemra so I rang for advice - at least a nurse answers the phone! She rang back to say bring a specimen for testing. I had done the dip test, I have my own strips. I picked up a form for the lab and delivered it - but omitted to read the form. Next day the doctor rings to tell me I appear to have an infection but I need to bring another specimen for culture. Just popping in is a 3 hour outing using public transport by the time I have traipsed to the department and then the the lab. We had words! Why had she not put on the form to do a dip and culture as appropriate? I was really not a happy bunny! However, when I got through the denseness she sent me a code as a text to take to the pharmacy for the required abx, She was trying to explain, in German which wasn't as good as mine why a culture - I only worked in the labs!!!!!

[strawclutching in reply to PMRpro]

Oh heck, I'm in a similar position catching buses, etc and my doc's is not on a bus route. Quicker to walk (about 20 mins for the average Joe) but can't get the whole way without hanging onto walls, etc, stopping every 20 yards. I have my own dipsticks too, and they always show nitrites & leukocytes even when no infection shows up at the lab. In the old days, your GP knew all about you, where you'd worked, who your family was, etc. They had great respect for patients with a clinical background. Not so now. All credit to you for struggling with foreign speakers too. Nightmare!

[PMRpro Ambassador in reply to strawclutching]

My German is very good - and all medical staff here are meant to be bilingual. With the staff shortages they have changed the rules, they have up to 5 years to pass the competency certificate when they only speak on e of the two when they come. In her case she THOUGHT she spoke German. Hum ... At least 2 rheumies here speak superb English - as they say, need it for international meetings, but she didn't. GPs don;t like here - she writes War&Peace in her letters to GPs!

When we moved here the GP was in the village but she decided to move into town, assuming her patients would go with her but we weren't allowed to. We were given the option of two in the next villages. One is easy to get to the village but his practice is at the top of the hill, The other is in the village and there is now a direct bus, wasn't then, but it takes half the day to get there and back. I have a car so it is OK, but without one it must be a nightmare.

[strawclutching in reply to PMRpro]

I always regretted not learning to drive & spent hours on buses taking my son for his appointments out of town. We'd keep having to get off when noisy children got on. He used to wag the naughty finger at them, tell them off and annoy their parents. (autism, Tourettes, sensory issues).Now, I wouldn't be able to run a car even if I could drive.

[PMRpro Ambassador in reply to strawclutching]

I've lived in the country a fair bit - life without a car and driving licence isn't a good plan!!!!

[Sharitone in reply to piglette]

'Pop' is a medical word now: 'Just pop your clothes off'... 'pop up on to the couch for me'....

[strawclutching in reply to Sharitone]

😃It's meant to make us feel relaxed like nowt's a bother but it just gets my hackles up. 🤨

[PMRpro Ambassador in reply to Sharitone]

Has been for years ... And like strawclutching it irritates me no end since they are a tad indiscriminate - the average 70+ patient with arthritis probably doesn't "pop" anywhere. The other term that is used in every other question is "is that OK?" which I can't remember any doctor saying to me 15 years ago ...

[Suffererc in reply to PMRpro]

what about every ache or pain being ‘Arthritis’. Great cop out. Apparently I have arthritis not PMR 😂

[PMRpro Ambassador in reply to Suffererc]

I have both - and the low spine arthritis is never blamed here for what I know fine well is PMR-related.

[Suffererc in reply to Sharitone]

yep 😂🤣😂

[Suffererc in reply to piglette]

rather like the phone at 8am then you wait 45 minutes to be told no appointments left .

[123-go in reply to strawclutching]

Not good enough! I'm pretty sure that nonchalance isn't included in the NHS Constitution!

[strawclutching in reply to 123-go]

Maybe they sneaked it in without consulting us.

[Suffererc in reply to 123-go]

you cannot question them, they don’t like it 😕

[123-go in reply to Suffererc]

You certainly can question your medical professional-that's one of your rights as a patient. As long as you are polite and respectful you should expect the same attitude in return. Please try not to feel intimidated and ask for explanations for any decisions made for you. You are entitled to disagree and if you can back up your reasons with any information -such as from this forum-all the better.

gmc-uk.org/-/media/document...

[strawclutching in reply to 123-go]

Thanks 123-go, that's a handy document to refer to.

[PMRpro Ambassador in reply to Suffererc]

If they don't like it and get stroppy you can go to PALS in the UK and they will mediate - it is probably about all they can do but it does often improve a situation. To be fair, younger doctors are likely to be more accepting because they have been brought up in the modern age where doctors are no longer regarded as infallible demi-gods.

[Koalajane in reply to PMRpro]

Last week I went to the eye clinic and saw a young opthamologist. She was lovely and I was able to question her without her getting annoyed. She even laughed with me about the fact that I was signing a consent form with blurry eyes due to eye drops to dilate my pupils. She was very nice.

[PMRpro Ambassador in reply to Koalajane]

Long may she stay that way!! Did you tell her?

[Koalajane in reply to PMRpro]

I did and thanked her profusely!

[piglette]

🤠🤠🤠

[PMRCanada]

Your rheumy is setting you up for more pain and suffering with their rigid, insistent approach. And why, exactly, MUST you be at 3mg of pred by October?? Is it because you will be cut off of Actemra at that time? You will end up undoing any progress while on Actemra if you flare and have to put up (or worse yo-yo) your dose. They aren’t the one living with the painful symptoms.

[strawclutching in reply to PMRCanada]

That is the idea - to get down as fast as possible before the Actemra stops. If I had a more co-operative and understanding GP at least I'd have someone on my side. The only people with any sense are on here. Couldn't stand a flare on top of a flare in two weeks.

[Sharitone]

Sorry to hear about your experiences, particularly about not being able to stay on TCZ when it is helping you.

If it's any comfort, I only get blood tests every 3 months.

[tempusfugi in reply to Sharitone]

And I suppose, if it's any comfort, I only get a blood test if I ask for it, and then, the last time I did, the locum made me feel like a nuisance for even asking. Don't know if they EVER monitored PMR but my surgery don't appear to do so.

[Seacat30 in reply to tempusfugi]

I only get blood tests when I visit Rheumatology which could be every 6 months. They seem mildly surprised that my GP doesn't test me any more (I am not at all surprised).

[strawclutching in reply to tempusfugi]

My rheumy insisted on monthly bloods after the first flare went undetected for 3 months despite soaring inflammation markers. At least that's one thing I can thank her for. But the GPs have to keep up their side of the bargain ordering them, and that somehow depends on how the guard dogs (the receptionists) are feeling on the day you make your request .

[tempusfugi]

So sorry to hear of your experience, strawclutching. It's painful to read, to be honest, and extremely worrying. As if you (or we) need more pressure/stress when dealing with this chronic condition - just the opposite infact.

As an addendum to this, I have recently requested an appointment with a neurologist through my surgery (won't go into explanations here for the reason but they are obviously valid ones). A couple of days ago I received the following bald statement from my local hospital:

'We are sorry that there are no appointments available'.

Admittedly, they go on to say they will contact me 'to arrange a mutually convenient time....when there is availability' BUT this is the first time I have ever received a letter simply saying there are no appointments. Usually, they give one some idea! More problems for me to deal with...

Sorry, couldn't answer your original question but the experts here have done so. I just wanted you to know I've got your back.

[strawclutching in reply to tempusfugi]

Just when we think the health system couldn't get much worse, there's another shocker of a letter waiting on your doormat. This isn't just about lack of money, it's more about the appropriate & fair distribution of it, plus so much more we have no idea about. Thanks tempusfugi, it must be so frustrating to be left hanging like that.

[PMRpro Ambassador in reply to strawclutching]

The more I read the less I want to return to the UK, I have even upped my annual membership of the Weisses Kreuz (White Cross) to include immediate medical repatriation here rather than after 3 days and I am only intending travelling to the UK!

[Suffererc in reply to tempusfugi]

I am still waiting for a yearly check up with a Vascular consultant. That should have been 2019 😊

[Sharitone in reply to tempusfugi]

Some years ago, I had at a dermatology clinic that was held every month. I had a letter cancelling my appointment, saying there were no clinics. I mentioned it tothe GP, who said, 'That's because their waiting list was longer than their targets allowed for, so they cancelled a clinic because if there is no clinic, then by definition there can be no waiting list.'

If I had your letter, I think I would be sending copies to eg the MP

[tempusfugi in reply to Sharitone]

Thanks Sharitone. Am aiming to follow up tomorrow, so will see how I get on. A letter to my MP wouldn't go amiss, as you say. Will think on't...

[strawclutching]

Wise plan!

[Wallysma]

Your doc is telling you what mine did and I ended up in a mess. You.dose according to.symptoms. I followed her instructions and have had the worst 9 months...I am still on a high dose of pred and it has done a number on my body. She must have read the same thing yours.did because I also need to be on 3 mg regardless of how I feel...just reduce...period. It has been an.ugly roller coaster and I.don't have the wonderful benefit of great.pain management. Waiting to go on Actemra (my RA is active again) but got a skin thing which delayed it....now just waiting to hear. I hope I.can get down on the pred with its help. But I want to figure out how we will manage a flare ahead of time after reading your post. So my advice...do not force it...you will end up taking more pred in the end like me. Good luck with this.....take care of yourself. I hope you work this out to your benefit. This disease requires so much work! Be well.

[strawclutching in reply to Wallysma]

Thanks Wallysma. I hope Actemra works for you better than it seems to be doing for me. My Rheumy insists the Pred is doing damage so I must get off it as fast as. Like I don't know that already? She wants me to be one of her success stories. If my body would only comply with her wishes ...😠

[Wallysma in reply to strawclutching]

Or if she had a clue how to get her success story! It is so simple....But these folks for some reason do not get it. They.don't see the damage being done. I also do not know why.they think we would want to be on lots of pred if it was not necessary. It sounds like the Actemra did ok...no? A flare can happen anytime. I see why it might not feel that way but being able to get so low is good...to me at least...tho who cares about that...LOL....I mean what I think....lol. all that matters is what you think! But I hope this gets sorted and you can lower the dose as you want and your body needs. Take good care.

[strawclutching in reply to Wallysma]

I'd previously got down to 9 mgs Pred without Actemra, but then at 8mgs not so good. With Actemra added I got down to 7 mgs and felt fine for two weeks before another flare started. A study I read said that two participants who had flared during 2 years of Actemra and Pred subsequently were able to wean off Pred. So it's possible, but unlikely to happen for me in the next 7 months bringing me to the end of my year's entitlement. Thanks Wallysma.

[Wallysma in reply to strawclutching]

Ok I understand more now. Well screw the entitlement....the PMR is in charge first....you second. I am in the same boat with my rheumy.and will see her in a few weeks. I need to have a talk with her about all of this. I.hope younare able to get what you need. I will keep you in my thoughts...fingers crossed.

[strawclutching in reply to Wallysma]

👍💔Good luck!

[Wallysma in reply to strawclutching]

🤜🤛💙 blue for pain patients a US thing...maybe elsewhere to?

Bye for now.💐

[PMRpro Ambassador in reply to strawclutching]

She isn't in charge - and that is something she needs to learn, And that Actemra only works perfectly for half of patients - and when the patient is in the "wrong" half it will only work to a limited degree and it isn't your fault. It really worries me when I discover that I have read more about using it than some professionals have!!

[Suffererc]

Sounds a big jump to me. I have the same problem with the medics. The rise in ESR probably an infection or something else. Who am I too argue. They want me off steroids asap. Do they think we enjoy being on them.

Or is it they know something they are not telling us about Pred 😕

[strawclutching in reply to Suffererc]

Thing is, these 'normal' levels of ESR, CRP etc. they make judgements by don't apply to all of us. I feel the return of PMR pain at ESR 15 so in my book my normal level has to be lower. Can't see the point of doing it their way and yoyoing all the time with lots of pain. Life is hard enough getting older.

[Missus835]

Rheumatologists don't experience the pain we go through (but act like they know). Generally it seems to be "boilerplate" scripts and information they hand out. I can't even get hold of "my rheumy". GP would not longer be "my GP" (he was a new one anyway and a mysoginist at that). It was all due to an anxiety med he "does not believe in" and when the Rheumatologist (on a rare occasion I got to see her - twice since May '22), refilled the script...he refused to be my "doctor" and walked out of the office. So now I'm high and dry in Halifax pretty much. Back on the waitlist. Thanks to this forum, I've learned more since Jan. 2022 than anywhere else.

[strawclutching in reply to Missus835]

Sounds like you're well rid of him if he can't accept a different opinion. I only speak to my rheumy twice yearly too by appointment but we have a Rheumatology helpline to leave questions which take days to be answered. By that time if you're having a flare it's got worse and the answer doesn't apply anymore. Have to agree about this forum. The medics should use it, they'd learn a lot. Hope you find a decent GP soon. Mine's rubbish but better than nothing (I suppose).

[Missus835 in reply to strawclutching]

Yes well rid of him and was going to fire him myself, but didn't want to burn that bridge. We can't even leave a message with the Nursing Station. Oh well...supposed to have a follow-up appointment 4 months from Feb. 8. We shall see as they have not even booked at this point.

[strawclutching in reply to Missus835]

Keep prodding them, they may actually get fed up and do the job properly.🙄

[Karenjaninaz]

I’m wondering if we can “re-educate” offending rheumies with up to date papers on the subject.

When I read all the issues, with getting care, I remember that so many practitioners actually died from covid. I know all remaining healthcare workers are still stressed and burnt out. There remains a backlog of persons needing care and healthcare workers are only human.

No excuses here just a harsh reality.

[PMRpro Ambassador in reply to Karenjaninaz]

Some of the leaders on the field in the UK will be embarking on an education programme for GPs which will be based on the sort of things Sarah Mackie and co have been publishing. SHe - bless her - is getting to understand some of her colleagues are a bit parlous in their knowledge but I think once GOs are more confident in management, rheumies may have to follow. The more of them who meet the publications and our experiences, the wider it will spread.

And to go with the harsh reality of staff issues there is the fact that most doctors are unaware how serious and disabling PMR can be - they think it is a mild short-lived illness.

[strawclutching in reply to Karenjaninaz]

I understand. There's another side too.