After waiting since last October I had an appointment with a Rheumatologist yesterday. I was referred by my Haematologist who was concerned about the symptoms I was getting which I thought were connected with my GCA. He started by saying he wasn't sure why I was referred. I explained the symptoms I was getting to which he replied 'but you don't have GCA'. According to him GCA only lasts for 2 years at the most 3 and looking at my CRP which was 2, the only true marker according to him, there is no sign of either GCA or PMR. The pains I have in my neck and back are due to Osteoporosis. I don't have Osteoporosis I told him. But you must have because you have been on steroids for 8 years. I told him I had a DEXA scan which came back normal . You can't always believe results from the scan alone. He then proceeded to tell me that I should get off Pred ASAP because there is no need for me to take it. I told him I have been trying for sometime to get from 7 to 6 but because of Adrenal Insufficiency I am finding it very difficult. He said I had to stick with it even through the difficult times and I should be off it within 6 months!!!! He then shook my hand said it was lovely meeting me and said there was no need to see him again. If I had any problems go and see my GP. So once more I am out on a limb. Thankfully I have the support of the Macmillan Nurse for my Polycythaemia which I was diagnosed with 12 months ago. I have had GCA for 8 years and lost the sight of my left eye. I forgot to mention that my blood pressure when I visited him was 109/65. Nurse thought this was very low. When I queried it with consultant he said it was because I am very fit. If it was 80/65 he would be worried. Today is a good day, yesterday I had blurred vision and lightheaded, nauseous and extreme fatigue, pains in my neck and lower back. I am left very confused and baffled.
Visit to Rheumatologist : After waiting since last... - PMRGCAuk
Seriously??? I am gobsmacked. What are you going to do, now?
Sorry to hear you have had such bad treatment, some people are just idiots in the wrong job. Do you have an ombudsman or someone to complain to?
I don't know where you live Heather, but do try to see a "proper" Rheumatologist! Someone who understands GCA/PMR. Prof Dasgupta at Southend would be good if you're in the London area. I'm sure someone can recommend for your area.
If you are having such symptoms stuck to your guns. You are at a dose that is similar to natural level. My friend husband and his mother who both had TA stayed at that sort of dose all their lives. If they dropped by o.5mg they were in trouble.
I am sure others with GCA will be along soon. Just ignore the @££&hole. Even if it is in remission you need support tapering given you initial loss of sight. It gets me so mad when people aren't listened to. I hope your symptoms settle a bit. 🌻🌻
Unbelievable that this rheumatologist person is paid for sprouting this rubbish.
Hi Heather, I always feel so angry after reading posts like yours....how you feel when you leave these very useless rheumies...well.....I don`t have GCA, but PMR and have been ridiculed like that myself with like yours, a holier than though, I know better than anyone else rheumatologist......sorry for my rant, but I can`t understand how they can be allowed to keep getting away with treating patients this way....wish we had a naming list of them all!!
Good luck in whatever you decide to do......but keep us posted, at least you will get good sound "and been there" advice and support on here!
😤 I’m speechless Heather. What a waste of space!
Un b...y believable! But sadly not at all unusual.
Keep in touch.
Dear lord - thank goodness he doesn't want to see you again!
With a BP like that I'm not surprised you felt tired - very fit indeed! When did you run your last marathon? When I had a BP of 90/65 my GP was amazed I'd managed to get to the practice - and I was in my 30s and reasonably fit then!
Um - where are you?
I was interested in what you had to say re BP PMRpro. My fathers BP is consistently 90/74 and he is permanently exhausted but nobody seems to be troubled by it. I am in the process of getting him diagnosed and treated for parkinsons but I can't see that PD would affect his BP. Neurologist appointment and datscan under our belts but got a 7week wait to see neurologist again for results and treatment. Deep joy cc 🤗
Yes it can
Are you in the UK? They are totally dismissive of low BP, believing it to be "a good thing". The rest of Europe takes it more realistically - because in the elderly it is a common cause of falls and falls in the elderly can lead to long term problems, even death. However, raising BP is notoriously difficult unless it is a case of re-sorting existing medication which can also cause reduced BP. My GP recommended a mini bottle of sparkling wine (Sekt specifically, Germany's version of champagne) in the afternoon when my BP plummeted post-natally. "It'll work better than any pills I can give you" he said. He was right!
Thanks PMRpro. Yes in uk and attending the Oxford JR hospital. I have read that link before along with so much other research into PD (my brain is spinning). Have joined health unlocked parkinsons movement also, many on there are trying high dose thiamine with good results so we shall see. My dad is only on prostate tabs and warfarin. He was on a very low dose heart tab that I managed to get them to remove at the first neurology appt as that lowers BP (he has a/f). I don't know if he has had naturally low BP all his life or just since his PD symptoms as he had been such a fit person, never a day off work so he's rarely been at the docs. Can't get him to drink much so that doesn't help. Thanks for the link will re read, I think it was the first article I read that made me go down the PD path with the doctors after years of being fobbed off cc 🤗
What prostate medication is he on? Is it to empty the bladder in benign prostatic hyperplasia? That also lowers BP.
Finasteride and just very recently tamsilosin, yes bph, to help bladder empty also soreness when emptying. Just come to visit yesterday to find him back on more anti biotics as he's in pain and bleeding when he's goes. Doc says its quite usual for men of his age. I deal with the PD appointments etc with dad but he and his wife deal with other "stuff", makes me mad the amount of anti biotics that are thrown at problems without getting to the bottom of things (scuse pun).
With you all the way - no wonder they don't find Pca until it is so advanced there is little to be done if they accept pain and bleeding as "normal". A friend's husband has a PSA of 120 and suddenly it is "No you can't go on your cruise next week and here, have an emergency bone scan as we think it is probably all over..." sort of situation. However - I suppose it is part of BPH so they have an excuse. Hope he improves soon.
However - both finasteride and tamsilosin cause low PB.
Heather that is absolutely unacceptable
Same symptoms as you in the last part of post led to me taking a day sick today visit to GP and told to take over the counter meds and I must not increase Steroids until I return for another appointment .
Many thanks to everyone for your comments. The consultant I saw is one of the main Rheumatologists in the South East and is on the same working party as Professor Bhaskar Dasgupta into the treatment of GCA/PMR. He has also written -papers about Lupus and Osteoporosis in the UK and America. I am therefore very confused why he made such comments about GCA/PMR. I will wait until I see my Haematologist the end of June and tell her my concerns.
I know someone else whose rheumy in the Kent region had trained with Prof Dasgupta - he too refused to make a dx of GCA (he'd finally admitted to PMR) and in the end sent her to him to get a second opinion to shut her up he thought. Dasgupta said yes, she had likely had GCA but it was now too late to use steroids, they would concentrate on symptom management - but refused to use the dose of pred that worked so the symptoms continued. Needless to say the original rheumy was not amused and tried to ignore Dasgupta's letter!
After another couple of very unpleasant years she asked for a referral to Sarah Mackie in Leeds. A throw away comment about night time back pain waking her rang bells for Sarah and she sent her for further imaging. This cleared it all up: it was anklylosing spondylitis! The neck problems had caused poor blood flow to the head and neck and caused the symptoms that were so similar to GCA and PMR.
BD also told someone that her negative TAB meant she didn't have GCA - which simply isn't true. She was eventually sent for PET-CT and lit up like an xmas tree with the inflammation in the chest arteries - GCA but in a different place. So even the mighty can get it wrong.
I don't mind them getting things wrong - if they admit it or at least accept there are exceptions. Or stick to the fairly well accepted and - to us at least - obvious things like how long it lasts. I think I only know a couple of people who got off pred in 2 years for GCA - and one of the developed PMR 4 years after getting off pred for GCA! And most of the GCA people I know - with proven GCA it must be said - took somewhere between 4 and 6 years to get off pred.
Anyone would think we LIKED being on pred!
I am still not sure what game the consultant thought he was playing. He obviously hadn't read any of my notes about loss of sight, positive biopsy and diagnosis from Cordoba Hospital. He just dismissed me and made me feel as though I was wasting his time. Thank goodness for people like yourself and this forum because at present I feel very alone and beginning to think a lot of the symptoms are imaginary. As regards his comments about being fit I forgot to tell him I had just returned from a holiday in France and cycled Mount Ventoux!!! Ha ha. I wish.
If you want to try another rheumy I would seriously consider a trip to Chertsey since you are obviously not that far away. Rod Hughes does listen.
And the other guy needs to be reported - he could kill someone who believed him that reducing pred relentlessly despite adrenal function being poor is the way to go. Not all patients think to question what they are told.
I did mention to my Haematologist about going to see Dr Hughes but she said there was no need as Dr B...... was the best. I shall now wait for her comments.
She thinks! Rod wouldn't have been that dismissive - or if he were it would be totally out of character.
Morning Heather. Mm...from your complex symptoms I`d suggest you seek out a Consultant Rheumatologist who by reputation, is the person you must have an appointment with. If you are within your home address catchment area and the current " adviser " is not up to standard, it`s easy for me to say this but, if you must travel further to consult with the right person, I`d advise you do so.
The target in your mind should be to get your health back to basics. Treatments to reach that state of health I`d suggest would be your " must have ". Be forthright in your search for the right Consultant.
GP`s are just that and not specialist.
Unbelievable isn't it!! It is so annoying when they sprout this rubbish and as you say have obviously not read your notes. Sometimes it makes us doubt ourselves which thank goodness isn't the case for you it seems. Don't know where you go from here? Another rheumatologist?? Xx
Hi Heather - I live in New Zealand so can't advise on who to see but it sure looks like some are playing a dangerous game with you. I'd take Eileen's advice and see her recommended rheumatologist.
Hi Heather. I had a similar insane experience with a rheumatologist 3 days ago.
I’ve had PMR for 4 years and a GP I recently started seeing is concerned that I haven’t been able to get below 10 mg (started at 40 with a few flares). He insisted on referring me to a rheumatologist, even though I indicated a desire to see an endocrinologist. My desire to see an endocrinologist stems from the fact that I’m almost positive my struggle to reduce further is due to amount of prednisone I’m actually absorbing. It could very well be only 50%. My major symptoms when reducing directly compare to the symptoms of secondary adrenal insufficiency.
My experience with the rheumatologist was almost exactly the same as yours! She wants me off prednisone in 8 months, reducing at 1 mg a month, even though I told her that I’ve only been able to reduce by .5 mg over a period of 6 to 8 weeks since reaching 16 mg. And “PMR only lasts 2 years”!! She would not listen to anything I had to say. “I know what you need, I’m the expert, that’s why you were referred to me.”
Two days after the visit I went back to the GP who made the referral and now have a referral to an endocrinologist. It will likely take a few months. In the meantime, I will continue my .5 mg drops at whatever pace my body can tolerate.
Hi nuigini. Good luck with your appointment. It is so frustrating when these so called specialists won't listen. A waste of time and money. I don't see my haematologist until end of June. I know she will be very concerned and do her best to help me. At least she listens to me.
Took me over 4 years to get reliably below 10mg. Subsequently I got down to 5mg though then had a flare.
If the MEDIAN duration is 5.9 years, 4 years is well within range to not have got to a lower dose, however much you absorb.
Thanks PMRPro. Another GP I saw recently to renew my prescription for prednisone had absolutely no problem with my being at 10 mg at the four year mark. I believe I'll be long gone from this world before the medical community comes together to fully understand and accept the nature and duration of this illness...if that can ever happen.
Unfortunately I'll only be able to see her for the next 3 months. After 8 years of trying, we finally sold our house in the Arctic! Fortunately I've found a good GP in Calgary where we'll be living for the 5 months we're not in Panama. Even though he's the one that referred me to the bully rheumatologist, he's also willing to listen and has made the referral to the endocrinologist. I had to laugh when he said he had a choice of two and felt I would get along with one more than the other. I said "personality- wise"? He smiled and replied "the one I'll refer you to is more open-minded than the other".