Sorry for long post ... I took jinasc's advice and went up to 15mg Pred (rather than 12.5 for 2 weeks suggested by rheumie) for 5 days, then dropped by 10% to 13.5 for 5 days and now on 13 which has stopped the pain. Told rheumie about my decision as 12.5mg didn't do the trick. He was keen for me to start methotrexate but I told him I had read up about it and I didn't want it.
He accepted that and suggested 12.5mg Pred for 2 weeks, drop down to 10 for 5 weeks and to drop by 1mg every 5 weeks thereafter until he sees me again which he referred to as a slow taper! He said I should have ONE more attempt to get down to below 10mg (there was a silent 'or else'!). I will continue to do my own version of a slow taper and see where it gets me until I get my next appointment.
However, he did blood tests and has ordered a chest x-ray which I now realise is in preparation for putting me on the methotrexate. I am so hoping that I can get down to below 10mg before I see him again because I think he's going to insist on me taking the steroid sparing drug if I haven't. He has emailed me the Versus Arthritis info sheet about methotrexate this morning.
Been seeing this rheumie privately through medical insurance since diagnosed in April. Rang insurance company to get permission for the x-ray and they told me that they will cease cover for PMR on my one year anniversary (April next year) as it is a chronic condition which they don't cover for any longer than that :(. I also have hardly any funding for outpatient appointments left as this rheumie likes to see me pretty regularly (at £144 a time). God knows what he'll charge for the blood tests and x-ray.
So what do I do? Do I ask to be transferred to NHS rheumie and goodness knows how long that will take or do I take my chances with my GP surgery where I wasn't diagnosed correctly after about four months of pain? I feel a bit mean saying that but two different GPs treated me for everything under the sun without even suggesting PMR. I'm in a bit of a tizzy worrying about it as I am hoping I will get under 10mg at some stage and having read lots of your informative posts, know that it gets pretty tough getting down to lower doses.
Thanks for listening!
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Have you read all about Methotrexate in FAQs? I believe you can come straight off it if it doesn’t suit you , check with your doctor though.I am unfamiliar with the (to me), pretty ruthless world of private health insurance. The median time for PMR is 5.9 years apparently. Given that you are unhappy with the advice and treatment you are getting from this Rheumatologist, I would be inclined to try to move back into the NHS fold. You can carry on having Jinasc’s experienced advice, she doesn’t charge. All the best, with whatever you decide.
Thank you SheffieldJane. I have read through the Q&A and I know that some people have had great success on methotrexate. I suppose I'm just worried about the side-effects on top of the ones from the steroids plus I'm on a lot of other medications for blood pressure too. I'm a bit concerned about another medication put into the mix but if, at the end of the day, I have to try it, I will.
Me too. On balance I decided against it. I did however agree to Actemra/ Tocilizumab when my condition morphed into GCA/LVV. The research I read gave me more hope.
Methotrexate taken orally was rough for me so I did the injections weekly.... No gastrointestinal problems at all. I had fatigue and no other problems.
Information and Tips for people with PMR and/or GCA from Professor Bhaskar Dasgupta’s talks in Cardiff and Bristol on 24 May 2019
This is the 10th tip in the paper referred to above.
10. In my experience Methotrexate is not as effective in treating PMR or GCA as it is for rheumatoid arthritis although some trials have shown a small beneficial effect. Leflunomide, based on open case experience, is often more effective as a steroid sparing medication for treating both GCA and PMR. We are searching for resources to conduct high quality trials with leflunomide. Such a trial in PMR is running in Netherlands.
You could put Professor Dasgupta's you might find these links helpful:
This is an extract from '5 things to Look for in a Rheumatologist' by Lene Andersen:
"Is on Your Team
Living with a chronic illness means changing the way you interact with doctors, subtly shifting the decision-making role to you. After all, you are the one who has to live with this disease every day and you know better than anyone how your body reacts to different treatments. A good rheumatologist will respect that you're the leader of your medical team and will provide you with the information you need to make the decision that's best for you. They will support you in doing your own research, encourage you to ask questions and explain the pros and cons of various treatments so you can make a fully informed choice. A good doctor will know how to offer their opinion with the appropriate weight, i.e., they will know when to back off and when they, as your expert consultant, should strongly recommend a specific treatment. When you have a relationship based in respect and trust, you, as a patient, will also know when to insist on your way and when to follow the advice of your rheumatologist."
You can read more of Lene's writing on The Seated View.
Toronto Canada.
Printed by Kind Permission of Health.com.
We printed the full article in a newsletter many years ago.
PS: I was extremely lucky with my GP, Rheumatologists during my 5 years with GCA.
Thank you jinasc for that info. I will certainly do a bit more reading before I am due to see the rheumie again. On reading Lene Andersen's extract, it makes me realise that perhaps a different doctor would be better! I really like my GP but I'm just worried that PMR isn't something that he is very familiar with which is a bit worrying in the circumstances!
That was the point of why we supplied £10,000 for a research project, specifically in the North East and Cumberland, to make GPs more aware of both GCA and PMR/.
That research project was due to start in Feb - one month before Covid hit.
The national charity is holding on to that money and as it is ring-fenced will be used for that purpose once circumstances allow. The medics who were involved in that research as you are aware have been and still are up to their eyeballs in work.
In the meantime it is really up to us to book a double appointment making sure it is the last appointment of the day, and I well know that currently appointments are difficult to get at present, with a GP you trust and explain to s/he your thoughts and worries etc. Quite a few of our group tried that out and it was about 50/50 success. The ones that were not successful changed or just stayed put. It can be a pain but it can and will work. As aside, we did find that the younger the medic, the more receptive - but that is between thee and me. 🤔
PS: My practice had had one person 35years previously who had GCA and I was the second one.
PPS: The average GP has around 6-10,000 patients - the incidence of PMR is not so high. I found out my practice had 6 with PMR and 1 GCA (me). That has changed as more progress has been made in recognising both illness - which is one of the aims of the charity which was only set up in 2008 and exists on a shoe string - but has made progress.
With all due respect to the good Professor, I was on Methotrexate for 3 months and it nearly half killed me and when I then changed over to Leflunonmide I had to give it up after 6 weeks because it nearly finished me off completely.
And yet the rhuinatologist (deliberate typo) I was dealing with was at great pains to caution me that it would take double the time for it to act (3 months for MTX and 6 months for Lef). One might think he was on commission, but thankfully he has since retired and no doubt to live the high life off all those €125.00 per 15 minute "consult fees" and which equates to a mere €500 per hour and €4K per day, and plus the commission!
Oh and when he did "injection clinics" twice a week he was also paid a similar fee by the private health insurance companies and his poor secretary could hardly keep up with getting all the forms signed up! LOLS
Fair dues you did make me laugh with that reply! However we don't have any MPs over here in this former far flung outcrop of the Empire and in any case he was making (earning) so much that he probably couldn't afford to take the loss and be an MP for the greater good!
I totally understand that Theziggy and before my husband got private medical insurance with work, I worked for the NHS for many years. We are very lucky in the UK to have it. The only reason I went privately was because I was in so much pain and my GPs were not able to help me.
Well since your Rheumy has got you on the road to recovery (or not) and you know a lot more about your illness - don’t see any reason why GP cannot oversee your from now on.
Get all the tests you can under hubby’s insurance, but then transfer to NHS…
You may not get to see a Rheumy any time soon, but if you do it’s quite likely to be the same one anyway.
As your treatment only started in April this year, think your current Rheumy is pushing you too fast to taper. ..and once below 10mg, guidelines say 1mg every 4-8 weeks depending on patients wishes and disease activity.
Personally I would go to your GP. I went privately to a rheumie as my GP failed to diagnose PMR over several months. I then dropped the rheumie and went back to a different GP. Blood tests and xrays are expensive privately. In fact 75% of people with PMR never see a rheumatologist.
Investigate the GPs and find out if there is someone in the practice who does know about PMR - and that includes some nurses who also have prescribing rights. If not, collect approriate links and educate them. It can be done. You have the diagnosis - the GP needs to learn.
The response from the private health insurance is absolutely standard in the UK - they cherry pick their patients and cover - or lack of it - for chronic illness is what bankrupts so many people in theUSA.
Hi - we had Private Health Care while himself was working but BUPA wouldn’t pay for Follow Up Visits as it’s a Chronic Condition but the Bank paid what BUPA wouldn’t. When himself retired, we had to pay for our own BUPA Care - they would pay for Tests or if l had a Relapse/Flare however, the Premiums Shot Up the following year so we gave up BUPA & paid Consultant Fees ourselves & my GP did the blood tests.
However, l seriously deteriorated & my GP wanted a 2nd Opinion so I was seen Urgently on the NHS & l have remained on the NHS ever since.
There was no Rheumatologist in Post when we moved house so l had a Private Referral to see a Consultant who asked my GP to refer me again on the NHS to him as l was going back on Methotrexate & that needed proper Follow Up/Support from the Rheumy Team.
Thank you Mrs Nails. I think I will try to have a conversation with my GP and see what he says. It would be much handier if they were able to help me manage the condition locally but I'm a little worried about getting down to lower levels of Pred and then what happens if my adrenal gland doesn't start to work again etc - will they know enough about the condition to help me. I have a few months to see how things go in the meantime.
As stated many times to others, the majority of GPs are quite capable of treating PMR, unless it is particularly complex or you have other health issues.
As for your adrenals, again most peoples do start to work again, some need more nudging than others it’s true..but there is no point in worrying about them until or if you have problems.
Should that situation arise there is information on the FAQs (have penned a post myself on the subject) - or just ask for help when/if you need to,
Hi Again - I’ve just re-read your post - explain to your Consultant that your Insurance won’t cover his fees after one year (he’ll know this anyway - most Drs stay within BUPA/PPP Guidelines anyway)However, if you do start Methotrexate you’ll really need to be on the NHS anyway to have full support of the Rhuemy Team which is essential.
Hi, I was seeing my Rhuemy privately and had the same situation but my consultant switched me to NHS. I had to pay for one more appointment while I awaited my Nhs appointment. Good luck
Ah, I wonder is that the norm? I will just wait and see what he says at my next appointment I suppose and take it from there. Than you for letting me know.
I am not in the UK, but it seems that many people have GPs who are willing to let us manage our owm tapers while rheumy’s are too willing to force other drugs and push tapers that are too fast. I know there are good rheumys out there and the UK seems to have more than most, but I would shoot for the GP first.
Very true about the rheumies. Of course, you can always get GPs who know even less, and are just following the lead from the rheumies.
I got hooked up with an endocrinologist who really seems to get it. Don't know how common that would be other endos, but she seems to focus on, not my vasculitis per se, but on handling the pred & coming up with a good way for me to reduce without sending me into a flare. She really gets that everyone is different, it's all very multi-factorial & that I am the true expert when it comes to my symptoms.
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My next taper - advice please 
Inflammatory arthritis 
Really upset with my GP
