Today I went to my long awaited rheumatology appointment.The whole department had shut down for the entire summer, while I was on mtx and Prednisone and should have been monitored. My usual rheumy wasn't there, in his place there wasa young woman and a you g guy who was probably a medical student.
She asked me how I had done this summer, I said I had a flare while trying to taper from 7.5 to 5, as perscribed by my regular rhuemi (her boss). I continued to say how I had to go back up and attempt a more gradual taper 1.25 mgs at a time. She asked me who "authorized" me to do this, I said "the forum"😂...she was FURIOUS! She said I should have gone to my GP ( one of those 12 year- old -looking ones,who wears Dr.Martins ) .I tried to tell her that this particular forum was frequently recommended by the NHS doctors for patients to get information on their disease.she didn't want to hear about it, she said the were just patients, not doctors.i said it wasferated
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Gaijin
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Sorry....I posted without finishing.....as I was saying, the forum was carefully moderated and that the nature of PMR required a bit of independence in dosing the Prednisone.
She didn't tell me what my markers read, nor any explanation of why she wasdering me to take a higher dose of mtx.. which I had suspended due to strong side effects ..she also ordered a TB test, hepetitis B and C and even HIV!!! No explanation...she was such a narc that u didn't dare adk but to.orrow I will ask the GP for a print out of my blood test. She said that my regular rheumi wants to put me on tocilizamub..she talked down to me as if I were a child after I told her about the forum...she said "medicine," instead of the actual name can't understand why they want to up the mtx nor why they want to give me the Actmera if I told them I was doing pretty well on just the pred.
It's awful here...you can't just refuse to take something.. They treat youlike a child...
I too had a dreadful appointment with a rheumatologist last month . My husband and I were so taken aback that we said nothing. I see him again next week, this time we are prepared!!
Could it be that they are giving me all these tests in preparation for the Actmera? But she did ask me if I had been volunteering with immigrants, she also used the stethoscope to listen to my lungs and what seemed to be the carotid artery in my neck while asking me questions about GCA symptoms..I'm so curious to know what they are basing these suspicions on.
I'm booked to fly to London next week to meet my new grandson but how can I go if there is a suspicion that I have tb and hepetitis ..never mind aids!
She's a little bit late looking for Hep B and C. If you had either, the mtx would have killed you by now.
And yes, if you're going on Actemra they will look for TB and for HIV before starting.
But before you start taking it, you should know there's a class action suit underway in the US because there are undisclosed risks to the drug.
Actemra manufactured by Roche/Genentech was approved by the Food and Drug Administration (FDA) in 2010 to treat rheumatoid arthritis and later in May 2017 approved for patients to treat Giant Cell Arthritis.
Since the approval of Actemra, there have been thousands of medical events reported to the FDA with more than 1100 resulting in fatal reactions after using the drug. Patients have experienced severe side effects including:
•Heart Attack
•Stroke
•Interstitial Lung Disease
•Gastro-Intestinal Rupture
Actemra & FDA Reports.
STAT, a [USA] national publication for health and medical information, recently reported their data to the FDA from investigating patients that were prescribed Actemra. The report urged the FDA to add new warning labels for Actemra. The investigation reported by STAT concluded that patients were at a 50 percent increased risk of experiencing a heart attack or stroke after taking Actemra.
In the USA, a class action suit is undertaken by a law firm without receiving any fees or compensation. They only get a percentage of the final award and expenses if they win, shouldering the entire financial risk in bringing the case. If they fail, they get nothing, not even expenses reimbursed. So when I see one of these, I pay attention.
Thank you,GG,for that information. I wasn't planning on accepting to go on Actmera...I tapered to 7.5 before a flare and was feeling great. Why they want me on Actmera or even mtx is a mystery.
Another mystery is that my endocrinologist told me that my adrenals are functioning , not asleep after one year on Prednisone..Can they tell just by a regular blood test?
Very easily it seems! They just assume you are an ignorant pleb so they can get away with saying rubbish. Technically your adrenals are functioning and producing the other things they make or you would be really ill. It's just like the boiler heating the hot water but not producing heat for the central heating - different bits, There is plenty of corticosteroid (warmth in the house) so they don't make more. But they aren't producing cortisol - which is actually the bit we are interested in here.
Thanks PMRPro, how can I trust this endo now? How unprofessional! I'm beginning to understand why my husband doesn't trust any doctors besides himself😂😂
Hi Gaijin, the tests are in preparation for you taking Actemra. My Rheumatologist talked about the possibility of me taking it and ordered the tests in advance. It's a precaution they have to take to cover themselves. It doesn't mean that they think you might have hepatitis. I have arterial inflammation as well as PMR and he always checks my arteries and listens to my chest. So I wouldn't worry about that. Still, she had no right to talk to you like that. I'd have been tempted to tell her straight that she needs to have some manners. I'd put it down to pred induced aggression! 😏
Thank you Gerri for your response.I was so confused as I came out of that surgery yesterday.
I have to admit that it is unusual in Spain for a patient to know anything at all about their disease. Most docs here are programmed to treat patients as if they were illiterate.They just trust the doctor and comply with whatever they prescribe, etc. Could be because there isn't much available on the internet in the Spanish language. Whenever I say I " learned" about something on the internet, most people here will say it's "dangerous" , that you can't know if anything on the internet is true or false! I just hope they are teaching kids in schools how to research and distinguish on the internet!
That's a terrible attitude for them to have. My rhumie said it was good that I was reading up about my condition even my GP told me to google it. Not sure how either will react to my questioning their advice though. That's a battle for another day.
I had missed this, you're right, there is no excuse for not keeping up to date, besides, most medical students worldwide use texts books that are written in English!
I was thinking exactly the same thing. Shocking treatment! A caring GP could do far better than that! Mine is happy for me to adjust the pred according to my symptoms and request what I want for my repeat prescriptions.
A lot of GPs look 12 years old to those of us who are 'elderly' and I feel it's our duty as 'expert patients' to help train them. My GP is middle-aged and comfortable enough in his own skin to accept that he can learn about PMR with me.
Enjoy your trip to London next week and your new grandson. I'll be there too, visiting my great-nephew and great-niece. Just because she wants to do a blood test, doesn't give you those diseases!!
When I comes to health and nutrition, most of Spain is at least 10 years behind.. When I told my GP ( early 20s , dr.martin boots) that I was on a very low carb diet, she told me it was very dangerous, that we need carbs, bla bla...don't they google, don't they read???
I have a feeling the inflammation markers were up again, my regular rheumi would have told me the levels and would have explained his reasoning, this one just kept explaining where to go to get these tests, etc.. While handing me sheets of paper with the same instructions on them."Are you sure you've understood everything", she said twice.
Hopefully my next appointment in November will be with him. I did tell her that the flare coincided with stopping the mtx.
According to my husband, they are probably doing a "study" on tocilizamub for PMR with the pharmaceutical company.They get a few thousand Euros for each patient included and in Spain, PMR patients are hard to come by, no matter how common they say pmr is here.
"There is something I don't understand. Why won't you let me ask you any material questions?"
Hi Gaijin,
I common story I fear
Many months ago I tabled a similar story, a schoolboy looking doctor who prescribed NSADs to add to my prednisolone because I wasn't getting enough pain relief from reducing too quickly.
The long and the short of it is he is no longer at the surgery
He was one of those who told me all the bad thing that steroid can do to the body. I came out from his consultation a quivering wreck
Since then and being a member on this forum I have learned more about PMR/GCA that he will ever learn, I fear but I hope not.
Incidentally I am not prejudice of youngsters, they have got to learn their 'trade', but letting him loose on me as an emergency case was more than irresponsible.
My sympathies to you Gaijin, you are not alone and you will eventually get the treatment you deserve.
7Department of Rheumatology, Hospital Clínico San Carlos, Madrid, Spain,
Department of Rheumatology Rigshospitalet, ... Sanitaria-Princesa, Universidad Autónoma de Madrid, Madrid, Spain. ...
Biomèdiques August Pi i Sunyer, Hospital Clínic, Barcelona, Spain.
Two of these three above, take part in worldwide research into PMR & GCA
So if your Rheumatologist does not come back in November, call them and ask which Rheumatologist near you specializes in PMR and GCA. They will know where and who.
In the meantime, if she calls you back, walk in and say 'No thank you' and if she says, stay, just say no thank you, you would not listen the last time and I do not intend to waste your precious time or mine' and walk out. You then cannot be told you missed an appointment.
If, when in UK if you run into problems, come on here and ask, someone is bound to know someone near where you are who is good.
Thank you, Jinasc ! I live in the "center" of Madrid and know the first hospital you mention.i am immediately going to do the paperwork to get a second opinion there. They assign hospitals and clinics according to your domicile but with special authorization, one can go anywhere. It really baffles me, that they are doing so much work on PMR and GCA here and yet the Spanish association of Rheumatology hasn't come up with a standard protocol for PMR and GCA. I have a friend who was diagnosed with GCA, here in Madrid at a large University hospital.She had really high inflammation markers and fever but no vision symptoms.They had her on 100 mgs for a few weeks!
I think the young woman rheumi I saw today is a Resident. The consultant was busy and so he told her he wanted to start me on Actmera and to order the TB, the Hepatitis and HIV test .When she saw "TB " she probably thought it was a good opportunity to learn how a TB ridden lung sounds like ..she asked me all the relevant questions ..as I was walking home, I kept thinking why they had suspected I have TB or hep.B or C ...HIV!!! Until I got home and learned on here that it is protocol to do these tests before starting someone on Actmera...They have been treating me as if I'm steroid resistant and are planning to put me on Actmera when i haven't complained about tapering at all ( I did do a lot of complaining on the forums, though😏).I don't think I am resistant.
This woman, she may have been an intern and not even a rheumi yet, made me feel as if I've done something wrong, plus she stressed me out ...I almost cancelled my trip to London!
BAD attitude!! Sounds awful. Just because she ordered the tests doesn't mean you have the diseases. Reading down all the other posts it sounds like she is looking at you as a lady of a certain age so you can't possibly understand what is happening....and that in itself is all wrong. Some of the younger doctors, no matter where they are, don't like to think that patients know more than them about their disease. (That phrase.."just patients, not doctors"......infuriating and out of the ark!!!) But with chronic conditions it is often the case that the patient does know more......or at least knows their own body and responses and reactions!!! She needs a good talking to!!! Good luck at your next appointment.
Now that I have had time to think about what happened and read all the posts on this thread, I will be going into my next appointment with a completely different attitude.
It probably happens everywhere as you say, but I think doctors need to learn how to get on the same page as their patients. They're will be patients who don't know and don't want to know anything about their disease but others who have the capabilities and want to be more proactive. I'm all for teaching hospitals, I've never complained about students being in the room when being examined by a doctor.Its that bad attitude , that feeling of superiority that some doctors transmit, that makes me so angry.😤
I absolutely agree with you Gaijin. I used to work in a teaching hospital and you are so right. It's getting the doctors to recognise that everyone has different needs....it just takes some of them longer than others to get it.
I find it a bit unethical to order tests in anticipation of drugs that you haven't agreed to take. However, I live in the States and thus all of those tests would cost me.
I went to the GP yesterday, she gave me a print out of my blood test results. I had expected to see a huge rise in inflammation markers but sed rate was normal and CRP was a bit elevated but unchanged since June. Rheumi is probably blaming it on stopping mtx . I'm still wondering why I'm a candidate for mtx let alone Actmera.
I've decided to play along for now, get the tests done in preparation for the Actmera.On the one hand, I'm scared of the side effects, but on the other, I feel solidarity towards other future patients with PMR/ GCA- if no one accepts to be in the trials , no one will ever benefit.I wonder , though, if it's just another steroid sparing drug or a real substitute for Prednisone ..or even a cure?
Thank you everybody, for all the helpful information .I will definitely go to the hospital that Jinasc mentioned and try to get an appointment to see a rheumi there. Meanwhile , I will talk to the rheumi, if he is at my next appointment, and see if he can explain what his criteria is on choosing me for the trial.I will also research all the posts on Actmera
IF it is all because of a potential pilot study then OH is appalled you were treated thus. ALL should have been explained to you and your INFORMED consent obtained. In writing.
If they aren't doing it properly - they are breaking the law.
Thank you, once again.pmrpro. I thought it unethical at the least. I got the idea he wanted to talk to me about Actmera in June when I last saw him but I never had a conversation about it, let alone sign consent forms. The tests he ordered plus the questions the young woman dr.asked me about working in close contact with immigrants as a volunteer, etc..had me really stressed for a while!
My OH did a couple of those trials, was paid big money for each patient but then stopped - he said that there were a lot of irregularities..docs who cooked the results, indiscriminately included inelegible patients, unfair division of funds, etc.. This was years ago of course at the beginning when they started doing these trials , but it has left me suspicious. They should be more professional than that by now!
I'm surprised at how my rheumi went about this.Could it be that due to the highly underfunded system, he had to relegate some of the case load to a resident and since he will be seeing me in November, thought that he'd have everything prepared to start me on Actmera? I know, I'm being naive .He has assumed that I'd accept . Im curious to hear about why he thinks I'm a candidate. Bending rules is part of Mediterranean countries..it's what made me fall in love with this country, I must add🙈🙉🙊
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