I've been experiencing PMR for about 10 months now and finally saw a Rheumatologist for the first time yesterday! That about sums up the state of the of the public health system in NZ, currently (if you have a rheumatoid condition anyway). I eventually went private as the public system, whom had seen me briefly last November ( seen by a Registrar) seemed unable to provide any follow up support when I needed them a few months ago. Needless to say, I thought I'd post my experience of seeing a private Rheumatologist in that it may be useful to others in a similiar position to me. Firstly, he was able to give me an experienced and 'specialist' opinion on what condition he thinks I have- he thinks a spondalytis condition based on my rib cage symptoms/swelling, sciatica like pain and other symptoms. He doesn't think it is AS and believes with the right medication to dampen down the inflammation, it should settle and maybe ( a big maybe, go away over time). He was clear to say, in his view, it was not a degenerative condition. More useful, was his advice on a change of medication ( adding salazopyran to the methotrexate) with the intent of being able to reduce the currently stuck prednisone level of 13 mgs. While the methotrexate may have been doing a good job it was causing a lot of hair loss. The rheumy indicated that if the salazopyran allowed a reduction in the prednisone level to less than 10mgs then I could move from the metotrexate to the salazopyran ( apparently salazopyran does not cause hair loss). I was also advised by the Rheumatologist to take anti inflammatories such as celebrex or ibuprofan if needed which was contrary to the advice given by my GP. If I have no success in decreasing the prednisone level with this combination of meds then he indicated his next line of treatment would be Humira. My husband and I came away feeling that I had been heard and he answered all my questions. While there is no certainty as to whether the med regime will work, I now have a plan to work with and a contingency plan in the pipe line. I slept the best ever last night knowing that a specialist was overseeing my condition and treatment, that a change in medication was advised, that a follow up appoinment had been booked and that he was able to allay some of my fears about the condition. I feel I have waited a very long time to get this far. I am also very thankful for this forum which has supported me over the months, and I'm sure will continue to support me in the future. I hope my account of yesterdays appoinment with the Rheumatologist may be of some encouragement to others. It was the best $300 I've ever spent!
Finally saw a rheumatologist: I've been... - PMRGCAuk
Finally saw a rheumatologist
Thank you for sharing your experience. I am glad you are feeling reassured and listened too at last and that you have a plan of action to follow. It is a great idea to take someone with you, to get as much from the appointment as possible. 10 months is still relatively early days with PMR ( GCA and LVV as well). So don’t be in too much of a hurry to get off the Pred - for all its faults it is still the most effective drug for controlling harmful inflammation. Do take something to protect your stomach with the addition of Ibuprofen. Your GP does have a point. Let us know how you get on with the new regime, please.
Thats good advice Jane. I will keep a close eye on the use of the anti inflammatories and the stomach. I will let you know how the new regime goes.
Sounds a good start. Hmmm - NZ doesn't even really have the Covid excuse for long waits does it!
The rheumy I saw in the UK wanted to use sulphasalazine/salazopyrin for me too but I couldn't start it there as I was moving here to Italy and no-one here has ever suggested it. But my rheumy here is quite satisfied it is PMR and there are no signs of a spondylitis. Sulphasalazine has its own side effects - it can make you very sensitive to the sun so watch out, though you are moving into winter now I suppose!
What happens in NZ about funding for medications if you see someone privately?
Bit of info, not sure it’s answers your question about private treatments etc - borgenproject.org/healthcar...
Sounds as if they run in parallel, probably like here. But who pays for the drugs - does the patient pay and have insurance to cover it or does the state reimburse them?
Not 100% sure tbh, think you need a NZer to answer that -do know daughter pays for some things. When grandson had his knee reconstructed aged 18 she applied and got it funded under scheme referred to as ACC -so had it gone in private hospital-but had to pay for painkillers he was prescribed when he was discharged -acc.co.nz/newsroom/about-us/
There are co-pays here and they can mount up as I discovered the other day! There isn't an exemption code for PMR (there is for GCA) so I have to pay for my rheumy appointments and procedures as the household income took us above the threshold. Different matter now of course but it is always a year behind. We also don't get painkillers paid for although if you have a private prescription you do get a cheaper version offered to you! And if there is a generic - that is paid for but if you want the brand name, you pay the difference. Even of the doctor says you need the brand because it is different, slow release or something. So here, the drugs will be covered whether the doctor was seen privately or in the state system.
It seems to be a right mixed bag in lots of places… like the curate’s egg -good in parts…
If you have a chronic condition here it is very good. Unless it is PMR 
All GP and inpatient stuff is free - even if the outpatient appointment happens while you are in hospital for something else! They take you down and it isn't charged!
Not complaining too much about my rheumy bill though - I do very well out of them and it is as prompt as private a lot of the time, especially if it is an emergency
Sounds better than here in NZ. Am I right in picking up you live in Italy?
Even if you go private with your health care the government still pays for your drugs here. I.e. The drugs presecribed by my specialist were mostly subsidised, although there was a bit of a surcharge, presumably for the salazopyrin - $60.
That's what I was wondering - and what you've explained is what I thought was the case after the other links. Quite similar to here in some ways. I don't think there is any healthcare system in the world that was really coping well even pre-Covid. And it is getting worse. I think they need some revision to make them more basic for the state-funded aspects. They are trying to provide things that are icing on a cake at the expense of the fundamentals and bread and butter.
Yes, I totally agree. From what I have learned Rheumatology conditions are pretty common and can be hugely debiltating ( as I've found out) but not well resourced and patients not well supported in the public system. There is certainly plenty of room for improvement!
Just had a look at the link. All correct except that the govt does pay for most drugs people require, providing on the Pharmac ( government list). Some of the more esoteric or very expensive medications are not funded by Pharmac. Then we must fund them ourselves, but this is the exception not the rule.
Thanks fir clarifying
The NZ health system barely coped before covid. Half the health work force currently have covid now so its got alot worse. All non essential health services like rheumatology and most other speciality areas have gone on the back burner meaning very long waits. The wait to see the private specialist was almost as long as I guess those who can pay will choose this route, thus putting pressure on the private system. Providing that medications are on the government approved drug list then they are mostly subsidised. At this stage mine are, but if Humira is required then I have to meet certain criteria ( i.e 4 swollen joints etc). Otherwise, I can still choose to have Humira but would have to pay for it myself. Lets hope I don't need to go down this path!
Hi - just wanted to say that when I was on MTX I lost half my hair, but the loss slowed down significantly with 6x folic acid per week. Has this been prescribed for you?
Yes, I am now on 6 Folate per week but the hair loss hasn't really slowed down ( ? maybe minimally) - thats why I reduced the methotrexate dose from 20 down to 10 mgs. While on the 20mgs the lowest I have been able to taper the prendnisone without everything flaring up again has been 13mgs. We are hoping the combination of methotrexate and salazopyrin may help reduce the inflammation and hence prednisone. Fingers crossed.
Indeed!🤞
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