REFERRAL TO RHEUMATOLOGIST

[hwigston]

3 1/2 years ago when I lost the sight of my right eye to GCA I asked my GP to refer me to a Rheumatologist. He said there was at least a 3 month waiting so I asked to be referred to one privately. I saw the Consultant privately for 2 years, and when he thought I was stable and recovering well he suggested to my GP that I be referred to an NHS Rheumy. My GP didn't think this was necessary and said it could be managed within the practice. Big joke when I asked how often I should see him he said only if I thought there was a crises. GP now retired and went to see new GP 3 weeks ago when I had a relapse. He admitted that his knowledge of GCA is limited, and when I suggested that perhaps I should be referred to a Rheumatologist, he said it wasn't necessary as there was nothing he could do that the practice couldn't. Told me to return in 6 months. I am not sure what my next move should be. I feel very reluctant to be referred privately again, and I can't go to another doctor, as the one I saw is head of practice, and holds the purse strings. Suggestions would be very welcome. I was on 20 mg at relapse 3 weeks ago, reduced to 15 mg after a week, tried 10 the 3rd week, but had to go up to 12 1/2. Feel ok now so will try another 2 1/2 next week.

[Celtic PMRGCAuk volunteer]

Hello hwigston

Well it doesn't inspire you with confidence does it when a GP admits that his knowledge of GCA is limited and then refuses your request to be referred to a rheumatologist........and then suggests you return after a whole 6 months when you have just suffered a relapse - appalling lack of care.

If it was me, I would return to the GP, preferably taking someone with you, and emphasise that as you have recently suffered a relapse, are having problems reducing back down on the dose and, having lost vision in one eye are concerned about the risk to the other, you would like to be referred to a rheumatologist. If that fails you should ask to see the practice manager.

Meanwhile, as you had problems when you reduced to 10mgs last week, necessitating a return to 12 1/2, then you might be more successful by remaining on 12 1/2 for longer than just a week, waitin at least a couple of weeks before trying 10 again.

Good luck and do let us know how you get on.

[tomasina]

Hi Twigston,

This is appalling care and you must insist on a referral to a Rheumatologist. I agree you may need support from a relative or friend, but you must do it. If no success, please put it in writing to the Practice Manager. I have had GPs within our Practice and the nurse, who have said they know nothing about GCA and I feel like saying "well Google it." Luckily I was referred to a Rheumatologist when I was admitted to hospital with chest pain and irregular heat beat.at the beginning of GCA. Following angiogram, which was normal, but my ESR and CRP was elevated I was commenced on steroids immediately. I have remained under his care for three years now and am so grateful for his care. Go for it my friend!

Regards Tomasina.

[Whittlesey]

Hi hwigston,

Responding from the U.S. I,also, am pretty shocked. My ear nose and throat doctor has insisted I see a rheumatologist ever since my diagnosis of GCA in May of 2012. mild vision loss, left eye.

Yes, a rheumatologist is the only specialist who knows this disease and hopefully understand it. I am changing mine, because she rarely returns calls and once refused to call in a prescription to increase methylprednisone due to a flare and hospitalization! She wanted me to wait until the following Tues (called on a Thurs. night) when the secretary sends prescriptions to pharmacies. I mentioned the word "Malpractice" and the prescription was called in within a few hours. But I am changing. The disease is too serious and it happens too quickly, --flares with bad results.

Would insist on seeing a specialist, which in this case means a rheumatologist and if necessary bring someone with you. And it sounds like the dosage between 10 1/2 and 12 1/2 should be ok. I stay on this dosage, after a flare for a few days and then reduce it to 5 mgs a day.

Apparently the swelling in the arteries (enlarged macrophages) can produce killer T cells, which can destroy the inside of the artery wall (have "googled" quite a bit on GCA, work as a paralegal). The artery can then "dissect" on the outside of the artery wall, which can have fatal results if it is the aortic artery that this happens to.

I am dealing with this effect in some large "vessels" (arteries), including the cartoid artery and two vertebral arteries in my back. Right now, the treatment is coated aspirin, methatextrate and the methylprednisone. Am seeing specialists all this month on this. I have had MRA (which is MRI of the arteries) of the head, neck, chest and back. Now, it seems that these are the only arteries effected with this aspect of GCA. Have to keep testing, because this is a very dangerous, life threatening aspecting of temporal arteritis.

So the need for a specialist is very clear.

I have had a bad reaction to large doses of prednisone (large doses administered intravenously, first treatments). I try to keep dosages down to 5 of methylpred. a day, with the aspirin and methatextrate. I may be trying a biologic which inhibits the grown of the killer t cells, instead of only treating the symptoms w/medrol. Looking forward to this.

Not to be overly long, here, which I may already be -- I developed Cushingoid symptoms based on the large doses of prednisone. These seem to recede with reduced dosage.

Wishing you so much good luck with this. And please, please insist on seeing a rheumatologist. It is your right and it is the rest of your life!. Please take good care and nice hearing from you.

best, Whittlesey, NYC, U.S.

[rockyandzeus in reply to Whittlesey]

HI Whittlesey In NYC, USA

I am from Edmonton, Alberta, Canada

Thank you so much for the explanation of the vessel disease component of GCA/PMR. I had read about it but did not quite understand what was happening.

I have had PMR for almost 3 years, treatment for 1.5 years.

In that time I have only met one other person with PMR.

I am very sorry for your vision loss. In my work I read x-rays and must have both eyes, so I am always worried about temporal arteritis.

Good advice for hwigston, and good advice for all of us: '...it is the rest of your life'

Thanks

Dorothy (rockyandzeus)

[Polywotsit PMRGCAuk team member]

This is really appalling. I suggest that you print out the British Society of Rheumatologists guidelined on GCA from the resources section of our website, HIGHLIGHT the relevant sections and take them to your GP. When you lost your sight you should have been seen, not as an urgent case but as an emergency, not only by a rheumatologist but also by an ophthalmologist. Insist on a referral. If there is a practice manager, put your request to the GP in writing and copy it to the practice manager.

[jinasc]

To add to Kate Gilbert, prior to April 2013, you could have spoken to your PCT. However these have been replaced by (Clinical Commissioning Groups (CCGs) and local area teams (LATs).

The guidelines Kate refers to make it quite clear the GCA should be immediately referred to Secondary level (Consultant level), either Opthamologist and/or Rheumatologist, and then further treatment in tandem with Primary Care (GP level). .

I would advise the Practice Manager that you will be consulting with your CCG about the situation if it is not resolved and also Change your Practice.

[Hoogli]

I have been put on a strict rota for coming down off prednisolone. My doctor has given me several blood test copies which on the 15th of each month I have to have so I can phone her on the 17th of the month. She monitors the test and tells me the results, and if all is well I have to take 1mg less. At the moment I am on 10mg.

My history is 12 years of PM, PMR and last year I was diagnosed with GCA, but only suffer with reduced sight, and crushing headaches.At that time I had come down off the steroid, but hadn't responded quickly enough to symptoms over the final 3months clear. Every time I have reduced to very low dosage I have had a relapse, going back to 60mg and having to come down off that.

Now they have decided a minimum of 1 month at a determined level, will do the trick. If my results after a month are not good I have to complete another month at that level, then test again.

Perhaps this might be a method other doctors can take up, together with looking up PMR/GCA and related illnesses on the computers they pay more attention to than the patients they see.

[jinasc]

Hoogli

The current thinking by the top brass, is no more than 10% at a time. However 10mg and 5mg are sticking points and it needs careful working out. Your body has got used to having pred, so when you take a drop there is a problem with distinguishing between the drop being OK and withdrawal symptoms. There is a pattern (devised by patients for patients) which can help to overcome and enable you to distinguish between 'withdrawal' and 'too soon'. It is too long to put on here so if you are interested a PM with your email address will suffice.

[corralie in reply to jinasc]

would like to have this info

have put my email in the bottom reply box as well as here

carole.alice38.gmail.com

is this correct?

[Whittlesey in reply to jinasc]

Hi Sambucca, I have GCA and have reduced the medrol down to 3 mgs per day. I also get 10 mgs of methetextrate by injections every week. I would be very interested in receiving this "pattern" devised by patients for patients, which can help to distinguish between 'withdrawal' and 'too soon'. My email address is: [e-mail] (Marie is my middle name). I am in the U.S. thank you. all my best, Whittlesey, NYC U.S.

[hege]

I do really feel for you and would agree with above comments.

I think that it is the percentage that you are reducing by which is most important....be cautious and only reduce very slowly until you receive proper guidance.

I have had PMR and GCA for nine years and still am finding it very difficult to go below 2mg....nothing is worth a flare up.

Good luck and my best wishes.

[corralie]

coud you please send info re withdrawal/too soon.

[e-mail]

thanks

[hwigston]

Many thanks to everyone for your help and guidance. I have now insisted I see another GP next Friday, so I will let you know how I get on. I will certainly print off the guidelines on GCA from the British Society of Rheumatologists. As regards a reducing programme, I am certainly staying on 12 1/2 until I feel stable enough to reduce, despite what the GP says.

[rockyandzeus]

Hello again Hwigston,

Sweet Mother of Pearl, I am absolutely horrified that you are not under the care of a Rheumatologist. Given your history of loss of vision in one eye, why would a GP mess around and take any risk with the other eye? The stats say that 50% of people with GCA will get PMR and 10-20% of people with PMR get GCA. The medical community doesn't really know if GCA and PMR are really the same disease or not. GCA and PMR certainly are 'horns on the same bull', so to speak.

And the 2 most serious complications for these are vision loss which you have experienced, and long term, damage to arteries, as Whittlesey described. Since the damage to arteries can surface even years later, everyone of us should pay attention to severe upper abdominal pain accompanied by bloating in case it is abdominal aortic aneurism, which is life threatening.

As for a GP leaving you high and dry in the midst of a flare up to figure out tapering your dosage, well that sounds like malpractice to me.

It is bizarre to think that you would be getting sounder medical advice from fellow sufferers of the disease than from your physician.

Having said that, the concensus amoung Rheumatologists seems to be 'slow but sure wins the race' when tapering off predisone. You really do need to be under the care of a competent caring specialist.

One thing that has bothered me since being diagnosed is that when researching PMR, the second line after the name of the disease seems to be a statement that PMR is a" 'disease of the elderly', most often women." No wonder it gets so little respect from GP.s I spent 18 months in limbo before I got a referral to a Rheumatologist.

And since I am in the 5% of PMR sufferers ('atypical PMR') who do not have bloodwork to support the diagnosis,(but immediate relief when prescribed prednisone), i still get the 'rolling eyes' from the GP when I must see him when the Rheumy is not available. One wonders if this was a 'disease of 30 yr olds, mostly men', if it would get a little more respect in the medical community?

Sorry to be rambling on. Stand up for yourself and insist on a referral to a Rheumy. We are all standing behind you!

Dorothy

[asthana]

it is advisable to go to a rheumatologist.

i have this prob for last 2 yrs but consulted a rheumo only 3 days back.one more med to be taken weekly has been added to reduce dependance on pred.

[estherdevers]

Feeling sorry for you. Your Dr has no right to refuse you referral. If there is another NHS Dr in the Surgery, try them. Complain to the Health Trust that covers your Dr, and plead the care you are asking for to come from the Trust. Maybe change your Dr.