PMRGCAuk

Seriously... are you f**king kidding me?

Seriously... are you f**king kidding me?

Called the Rheumatologist's office today (who I'm seeing privately) to advise I have not been well since reducing from 50mg to 45 mg of Prednisolone a week ago. Here is a run down of the conversation I had with her Secretary:

Me: Hi, I called earlier (which was about 7 hours earlier) and left a message explaining my concerns...

Her: I have not listened to my messages.

Me: Oh ok... well, over the past few weeks, I've been reducing my Prednisolone. The last reduction from 50 mg to 45 mg as brought about some distressing symptoms; a dull constant headache, tenderness in my right temple, pain and tightness across my neck, shoulders and back, and across my collar bone area, and extreme fatigue. I'm concerned about reducing further from 45 mg to 40 mg, which is supposed to happen on Wednesday, January 3rd.

Her: I'm not medical and I cant help you... and the doctor is out of the office until next week.

Me: Oh, ok... well is there another doctor covering for her?

Her: No.

Me: Okay... What are her patients supposed to do if we are experiencing issues?

Her: If it is a medical emergency present to A&E. Or go see your GP.

Me: I'm not sure my GP can help as she is not aware (nor had she discussed with the specialist) the proposed taper down schedule.

Her: There is nothing I can do. If you want, I can give you my email address and will forward your email to her, but it's quite possible that she may never read or respond to it because as I said she is out on HOLIDAY.

Me: Ok.. can I have email address.

Her: Have you called your GP?

Me: No, as I explained... blah, blah, blah. May I have that email address?

Her: Have you tried to make an appointment with your GP?

Me: No. Look... I'm sorry to have bothered you. It's obviously that you are not interested in helping me and do not want to give me that email address... I'm very sorry for wasting your time.

Me: Putting down the phone ***click***

I spent the next 30-40 minutes hysterically crying and feeling ridiculously sorry for myself... until I remembered the power of the written word! I then spent the next hour writing a letter to the Rheumy!

Today I increased my dosage back to 50 mg, which is the last dose with which I felt good, healthy, and "normal." We shall see what tomorrow brings!

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I hope tomorrow brings you happiness. I am so sorry you are dealing with this Dr. stuff! I'm right there with you!

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Thank you.

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Hi sorry your having this problem with your rhumy , im in the same boat it is so frustrating i was told on 5th of jan 18 over the phone my cpr was raised by the rheumy nurse and i told her for the last month i had what i assume was a pmr and gca flare up .i explained all my syptoms to be told the rheumy will call me monday the 8th jan to tell me what to do regarding pred ..im still waiting !!! Inthe mean time i raised my pred from 10 to 12 half and improved next day but i feel so alone with this illness .also my hair is falling out in clumps its all so distressing .hope you get a response soon take care

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I am so sorry to hear this. How disappointing! Good job you taking control and managing the issue. Sorry about the hair... I'm on 80 mg at the moment and very worried about that happening, as I wear my hair short and if it happens, I'll be bald!

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Thanks for your reply that was the first ive posted , so sorry to here ur up to 80 mg its so hard when you have to up the pred even though it helps it just pushes the journey back. lm 57 and was diagnosed 28th july 17 with pmr and gca , physically and emotioally its been up and down with no support from any of the professionals i feel like all my knowledge and help of the disease comes from sites like this ,and now the latest thing with my hair:( ..my hair is long and curly i just dont no what to do im dreading what it be like if it continues falling out as i still got a fare way to go on pred ,if all being stable on 12 half . Sorry to ramble on ,when was you diagnosed with gca/pmr and hope your getting better response than b4

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I was just diagnosed with both as well, on December 12th... I had been to GP and A&E twice in the two weeks before and was told it was a migraine! Horrible diseases! I think because the treatment is so cheap and apparently effective there is not a lot of interest in finding out more about it or looking for alternative treatments. They just kind of let us all flounder out here... thank goodness for forums like this! Hang in there!

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Hi thanks and you too hang in there ! And i do think ( hope i dont affend anyone ) because the disease affects mostly the older generation they dont bother to find out more about it hence the uncertainty you get from the dr's who seem in the dark about what to do. Have you had any other tests other than biopsy to check if the gca is anywhere else in your body as i haven't !! i do worry as i know it can affect the aorota too.

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Sorry - but I do have to point out there is actually quite a lot of work being done on PMR/GCA. But all autoimmune disease is a mystery really and until you know the HOW and WHY you can't look for a cure.

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Thanks for your reply that is encouraging to know

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I could spit feathers for you , don’t be upset . I would have gone to 50 as well .

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I love that "spit feathers!"

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Me too!

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I hope you've sent the letter! As you aren't getting the medical help you need you are quite right to do what you can to keep yourself on the road to recovery. 💪

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I researched the doctor's email address and sent it off! I received a response back FROM THE SECRETARY that said: Dear Mrs White, Thank you for your email. I will pass this to Dr XXXXXX. Kind regards XXXXX

I responded with, "Thank you."

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Sorry that happened. UGH! what an awful woman!!!! Too bad you didn't have the presence of mind to say, "excuse me, it seems you are having a bad day... did a House fall on your sister? " (remember that one for another time!! haha) I think, although as we know I know NOTHING, you did the right thing by increasing... aunties will answer and put your mind at ease.

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Hahahahahahahahaha. Okay that one made me laugh right out loud!

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While the cat’s away, the mice will play. ??? (Haven’t listened to messages left 7 hours ago.)

I understand that doctors are human and need vacations, too. However to leave her service without coverage from another doctor, and staff that see it as a time to slack off, sure doesn’t help her patients and their needs.

Glad you sent off your email. It may make her rethink her policy when she takes her next vacation.

In my opinion, you did the right thing in bumping back up to the dose that was symptom free.

Hope you get relief soon!

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thank you... I appreciate all the support and positive responses. For a minute I did think I had overreacted... but then thought, "HELL NO!"

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Ditto on everything. Now have a snooze and, if you can pat, yourself on the back. I can't reach back so pat my knee. 😉

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Hahahahahahahahahaha. I got to my elbow!

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Hi,

I don't know if you are in the U.K. but the majority of the Consultants who do private work do it in addition to their NHS contracts and don't provide emergency cover or have colleagues that can cover for them whilst on holiday.

The secretary gave you the right advice which was to contact your GP or go to A&E, both of whom could have sought a Rheumatology opinion to help.

I worked in the NHS for over 20 yrs in ITU and we regularly had admissions from private hospitals when patients became unwell and they didn't have the necessary experience to treat them. Private appts are ok for second opinions etc but outside of London they don't really do acute illness.

I hope increasing the pred dose helps and that you get a response.

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Thanks. I am an American living in the UK for the past 8 years and my expectations may be unrealistic. Although I appreciate that she may have been giving me accurate information, my disappointment was the manner in which the information was provided. She was rude, curt, uncaring and showed no sign whatsoever of empathy or compassion. I too work for the NHS (in an Administrative capacity) at the RSCH in Brighton; I know the pressure and strain they are under to treat patients and meet standards/goals. Their A&E department is crumbling under the demand. My position has me working face to face with patients everyday... and not in a million years would I think of speaking to a patient in that way. Silly perhaps, I just expected more as I'm paying good money for the services. I'll know better next time...

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Of course there is never any excuse for rudeness and disinterest!

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I have been on this forum a long time and my general impression is...UK, USA, or elsewhere...not many doctors are very good at managing the prednisone and your symptoms. Excellent advice is available here though...dose management, tapering, etc. AND usually a quick response. You are in the right place!

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Thank you... yes I have felt that I am in the right place for a couple weeks now.

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I am in Texas and my rheumy is from India, when she goes on vacation she calls her office every evening around 5pm and talks to her nurse who gives her all her messages and she tells the patients what to do... usually get a reply by phone the next morning early... she stays right on top of everything and when I have had a hard time with something and she's in the office they tell me to come on in and they work me in... I have never had to wait more than 20 mins to see her... she is wonderful. I really wish everyone was so fortunate.

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Me too.

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Welcome to the world of private medicine. We have spent thousands on private doctors over the past few years and have reached the conclusion that private hospitals don’t want sick people. And as for Health insurance. What a scam that is. NHS isn’t perfect but is always open.

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I work for the NHS, I love the NHS... but I was going to have to wait 12-14 weeks for an appointment with a Rheumatologist! That is the only reason I went private... my GP did not give me a lot of confidence that she knew a lot bout PMR/GCA and 14 weeks was not an option.

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I tried to get appt with Rheumatogist here in Minnesota (with all the insurance one can buy) and it was 11 weeks. They are super busy..all us old people apparently... so I just stayed with Primary..told him I didn't need Rheumatologist when what he was doing was working and I had this forum. ! But just saying not so great privately either.

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She certainly doesn't know a lot about GCA if she told you would have to wait 12-14 weeks. Does she say that to her stroke and heart attack patients? They are all equally medical emergencies - but she would have had to exert herself and phone a friend...

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Agreed, Tonysue. Ignore the glossy ads. It's a money-making system with a focus on the profit motive. Like everywhere, there are doctors of every hue - some excellent, many average, and some awful. There may be a tendency sometimes to give unnecessary treatment, as it is going to be paid for. Conversely, insurance is always limited, and you will get only as much as your premium covers or what you pay for. Private hospitals generally are limited in what they are able to treat, and rarely have more advanced staff or equipment. (This applies in UK and a few other countries that I've experienced - can't speak for all.)

The UK NHS is far from perfect, but we should value it and try to prevent it being run into the ground by the current Powers-That-Be. Here endeth . . . .

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Yes I agree with you regarding this.

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Well, nothing surprises me anymore regards to Rheumatologists, secretaries, treatment.....but I do think when we are diagnosed.....we should all be issued with a "stress doll"....... to rip apart at times like this!!......I have said all along the six years that I have had PMR......they have at times made me worse......and they are their for the opposite!

I hope your pain is eased, and continues to do so......good luck☺

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I like it... a STRESS DOLL!!!!! She would have been a bit worse for wear yesterday

!

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Yes, I haven't seen any for a few years......perhaps they were used quicker than they could make them!😉

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I think I would have been tearing my hair out after that conversation! So much for our advice to avoid stress. A few deep breaths now, mamaicie, and R E L A X.

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.....and exhale.

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Yes, definitely don’t forget that bit!!!

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So sorry about your difficult experience. . The woman should know patients with GCA are emotionally fried beyond recognition and require extra TLC. Please relate your experience to the Dr. when she returns. Why wasn’t there a covering Rheumatologist?

So glad you went to 50 mg. Are you feeling better? Eat chocolate, get a massage and do something naughty!

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Not sure why no covering.. I was told that is not the norm here in UK. (?) Yesterday was not a good day, but will do 50 mg today and see how it goes. Thank you.

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You will be having a big response to the stress of the past few weeks and yesterday. I am sure 50mg will mean it's got you buzzing and not necessatrily in a good way. I accidentally took a double dose when at 13mg for PmR and that 26mg had me running around then heart palpitations and feelings of impending doom by that evening. So it was a wild ride.

The rheumatology dept I go to only seems to have 2 rheumy and no doubt the hospital wouldn't find more to cover holidays. I suspect both have full books. So in smaller hospitals it may be just 1 specialist. I direct all my inquiries via the nurse but that depends on them or admin picking up emails. I have got to say they have responded within a few hours...sometimes having discussed question I had with rheumy who I would never get to speak to myself! I think it reasonable to ask for an effective way of discussing treatment especially when newly diagnosed or placed on new meds. Try and have a nice quiet day today and let adrenaline and stress hormones disapate. My legs just back to "normal" after xmas 😲

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I think it is probably because urgent stuff is more often done by NHS doctors - many private hospitals have no emergency cover of any sort and fall back on the NHS to catch any flying s%*&. The system is different - there is no overlap between private and NHS except when the NHS purchases private beds/services to shorten waiting lists. Or when a private hospital dials 999 to get their bleeding/collapsed patient transferred to the nearest A&E because there is no anaesthetist in their private clinic (and yes, I have seen that happen).

Many of the rheumatology emergencies in the NHS can be dealt with by physicians - that is what happened in our local hospital until very recently when a top PMR/GCA rheumy was appointed to set up a specialist rheumatology department for the region. And they can always ring a specialist rheumy.

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In fact for anyone who goes private for an op it is always a good idea to check that there is an NHS hospital nearby in the case of an emergency. You don’t want to have to be carted miles away when you have major problems.

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Sandy1947 you are amazingly young at heart. do something naughty? still? haha

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Of course! Can’t do life in a straight line. However, date last Saturday night told me to be more flexible. Needless to say, he’s fired! New one for lunch this Saturday! Another Dentist. They must excel at divorce like lawyers! I could write a book...very funny!

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write a book! or at least an essay. I have places you can send it to! I love vicariously dating through you. And love that you enjoy it. I had a friend once who went to someone's apartment for dinner (I think a second date which she regretted) and aside from the microwave aspect he showed her that he had a urinal installed by the side of his bed. ! hahahahahahahaha

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Your friend’s experience sounds dreadful! I have rules...don’t tell them my last name or where I live unless we are dating for a year (just joking), listen more than I talk since they tell you everything so it’s easy to assess possibilities, no cheap...if they don’t take me for breakfast, lunch or dinner I refuse the date. No book or essay since my time is spent writing on this forum and trying to negotiate ever changing PMR and tapering!

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I bet he was proud of it too...yuk yuk yuk.

The thought of waking up mid.....well back to your imagination. A urinal...omg. 😨😱

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Ha ha. Been there, done that. Did my share of kicking and screaming. I blamed it on prednisone. Sandy1947 - you hit the nail on the head, we GCA people are emotionally fried! Yes!

But don't expect non-medical front-desk staff to understand this. They're just sticking rigidly to their job. Paper pushing, not making decisions is their expertise.

After a year of sheer shit, my GCA is over, so are my tantrums. At Christmas, I took a box of yummy Ferrero Rocher chocolates with a thank you card to doctors, nurses and staff of the medical centre. Guilt? Not really. If it had not been for GP vigilance, I could have lost vision in one eye. In time I reverted to Miss Nice, became friendly with staff. They called me Curly Top.

I blame that on prednisone as well.

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Oh yes - happy 2018, Mamaici 1. Greetings from New Zealand.

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Hmmm, that's a broad brush you're painting with... I am "non-medical front-desk staff " and work for the NHS, at the RSCH in Brighton, UK. I and my immediate colleagues do not stick rigidly to our jobs, nor do we push paper and avoid decisions. I can HONESTLY say we are all dedicated, caring and compassionate people. We will always try to make things work in the patients favour. I (as a patient) always try to be as nice, polite and understanding of the medical admin's position and the demands on her/him. This particular Secretary was either A.) in a bad mood; or B.) generally just not a nice person. I may have been emotionally fragile, but she got only as good as she gave...

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Of course. Apologies. I did have trouble getting past front desk to ask for an update prescription I lost. Desperate that I had run out of prednisone. Was told I had to see my doctor, who was away. Eventually, one spoke to another doc who immediately wrote out a prescription.

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To add to mamaici's point - I can't speak for RH's NHS secretary but his private one is amazing I'm told. If a patient needs advice the email is passed on to him, whatever he is doing, and he replies. If you are working privately you are being paid by the client/patient to take responsibility for them. If you don't want to do that - don't do private work. It's pretty simple.

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Hi there - don't forget you can always call the PMRGCAuk helpline 0300 111 5090. It's free, it's staffed by dedicated trained volunteers who either have, or have had, PMR and/or GCA.

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Hi KateGilbert

Wish we had something similar in OZ & akin to the knowledge base re PMR/GCA that exists (despite imperfections) in the UK.

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what a wonderful resource good reminder. Now to move to the UK! (my sister lives there.. if she ever gets PMR she will be in the KNOW! )

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I am so sorry you had to go through that. I am finding more and more that the medical professionals these days don't really care to put us first, even though it is us to makes them financially stable, or rich! I started with a new doctor because my old one moved farther away. After one visit I found out that the new guy only works a couple days a week, maybe! Why would he bother to even take a new patient? My poor husband has had terrible experiences as well. I miss the good old days.

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Hi - Don't forget you can always call the PMRGCAuk helpline on 0300 111 5090. It's free, staffed by trained volunteers, and you can say and ask anything you like. You've got a serious systemic illness and you're taking a very powerful medication - not surprising if you feel crap some of the time. Dropping the pred may cause a few days of discomfort, but you need to get down from these high doses as soon as you can in order for the rheumatogist to monitor the disease.

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But not at the expense of allowing breakthrough of inflammation which is still active - which is very likely to cause a return of symptoms. Which is why mamaici wished to get advice from the doctor who was managing her and charging a not inconsiderable amount for the pleasure. She was reducing the dose as required - and the doctor concerned was not monitoring her.

It is priceless that a PRIVATE rheumatologist should tell their patient to turn up to A&E for the NHS to cover for their far more lucrative private work. But for some private consultants it is par for the course.

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Today's Update - I was unable to get off the couch yesterday... it was a very bad day. Today I presented to A&E, as my GP had no appointments until Monday. I waited only 45 minutes and was told a "team" of the A&E doctors discussed my situation/concerns and came to a unanimous decision that I should go back to 60mg of Prednisolone, beginning today. They also recommended that I see the Rheumy ASAP (when she returns from holiday next week) and come up with a "less aggressive" plan of tapering. Today, I am still on the couch, but I'm washed, dressed, and even have a nice dinner planned for when hubby gets home. It's a better day.

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Hallelujah!! Was there a rheumy amongst that A&E team? Who does private work? Just wondered!!!

However - your GP should be able to phone a rheumy department and tell them he has a GCA patient who needs an emergency appointment. The umpteen weeks you quoted is URGENT - not the same thing at all. Some hospitals have specialised fast-track GCA clinics but ANY hospital should be able to expedite an emergency appointment when requested. You might even get a specialist rheumatology nurse who has access to a consultant all the time...

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What mg is no longer considered “high dose”? When I read that, I wondered if I’ve gotten below that yet. (I don’t want to assume.)

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Above 20mg is considered high dose, 15-20mg is moderate dose and below 10mg low dose.

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Thank you, PMRpro.

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Yes definitely. Everyone needs to be informed about the diffeŕence between "emergency " and "urgent" in NHS speak.

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