So many questions

[Zebedee44]

Tomorrow I have my second visit to my GP since he started me on prednisolone three weeks ago, after blood tests and symptoms indicated PMR. I had more bloods taken yesterday so hopefully we will see some improvements and know we are moving in the right direction.

My head is so full of questions and anxiety about the condition and its implications to my life and like many of the people on this site I am hugely comforted by the wealth of understanding and support to be found here. I have been reading Kate's Gilbert's book (which I find very readable) and trying to learn about the condition, it's treatment , exercise, diet regime etc, trying to see how I can continue to do the things I love.

I am currently fighting a battle with the Department of Work and Pensions for Personal Independence Payment, having been out of work and on ESA for two years. The stress Has most definitely played a part in aggravating the PMR. My limited resources prevent me from being able to pursue some of the suggested remedies, like aloe Vera, organic products, supplements. Can anyone help advise me of any additional help I can ask for or qualify for. I am not a scrounger, like I have been made to feel by the system I am forced to turn to for help, I expected to retire this year, redundancy came too soon

I have been lucky with my GP here in Wales, he has been very supportive through my recent hell, but it will probabaly be months before I see a Rheumatologist, or get a DEXA scan, or even a confirmed diagnosis.

I hope there are people near me I can meet up with for support and advice in due course, meanwhile all on line info would be very welcome.

It's 6am and I am buzzing with worry about my appointment and the things I need to remember to ask. The gp should give me some steroid user I.d card, is that right, but can I get a blue badge for my car for example?

Hot flushes and sleeplessness were part on my menopause I thought, now they seem here to stay!!! Hey ho!

Chrissie (aka Zebedee)

[Hidden]

Hello Zebedee44

Write down a list of your questions, then perhaps put them in order of importance, you probably won't get time to ask them all today, so highlight the main ones.

Ask at Reception for the Blue Steroid Card or at The Chemist, so one less question for the GP

If ever there was a time for 'don't try to run before you can walk' this is it, pace yourself, just deal with 'now' & get the pain under control.

Where in Wales are you? I live on the North Wales Border close to Chester.

Best Wishes 💐

Mrs N

[Zebedee44 in reply to Hidden]

Thank you for the good advice. I'm not so good at pacing myself, especially feeling so "wired" this morning.

I live near Lampeter, in Ceredigion, West Wales. It's heavenly country living but medically somewhat behind the times perhaps. Strangely my doctor seems to have diagnosed quite a few cases of PMR in "younger" people recently. This is alarming, bearing in mind many of us live very clean healthy lives in a beautiful environment.

[Hidden in reply to Zebedee44]

There does seem to be more & more younger people being diagnosed, I was 55 so GP was convinced it wasn't PMR!

Good Luck this morning & l'm afraid you'll have to learn to pace yourself. The Prednisolone could be making you feel 'wired' big doses make me a bit OTT!

Best Wishes 🌺

[PMRpro Ambassador]

If you want to have a blue badge - you have to apply and see what your issuing authority says. They are all different so nothing said here may apply!

The chemist should have a steroid card - but half the time they look at people as if they have two heads! If you can't get one - this support charity has them available via their shop (I think, it may be for members, I can't remember):

pmr-gca-northeast.org.uk

Don't worry about not having been able to afford most of those suggested remedies - they don't work!

If you have a good GP - you may never need a rheumy if things go well. That support group has a lot of advice to offer and here is some more reading if you want (for your GP too maybe if he's interested):

patient.info/forums/discuss...

It's another PMRGCA forum where I have collected the useful stuff into one post - we aren't allowed to post links without approval and this means they are all in one place. At the bottom of the post is a link to stuff about pacing - essential reading.

Your GP can refer for a dexascan and you should be given priority as a pred user/PMR patient.

[Zebedee44]

Thank you, I have managed to get the GP to request a DEXA scan and he prescribed omeprazole for my insides when I told him I was afraid to take AA.

The ESR and CRP counts are hugely reduced today and my Hb level is raised to normal so all is looking good. And no sign of abnormal sugars although I do feel very jittery and crave sweet food.

The GP had a student doctor with him today who had met a PMR sufferer as one of his first ever patients. So my GP was particularly thorough and diligent, and I was glad I had taken a card with me to thank him for spotting the PMR so promptly. I believe in thanking people when thanks are due, and I have had more than my fair share of disinterested doctors

We have scheduled a taper process over the next few months in the hopes of reducing the jitters, rapid heart rate, and adrenal exhaustion. I am also to reduce my Fenatanyl dose so I don't know what to expect in terms of PMR pain and other symptoms.

All I know is that it is making for a challenging time, but many of my worries are being taken away by the support from this forum, so thank you all.

[PMRpro Ambassador in reply to Zebedee44]

The jittery-ness and craving sweet food is almost certainly the pred. Do try to resist! That should help avoid the weight gain.

Be warned: your GP may have devised a reduction plan and told you. Unfortunately he won't have said it firmly enough for the PMR to hear! It has its own rules and concepts and you will need what you need to manage the inflammation and symptoms. Do not try to reduce in too large steps - that runs the risk of steroid withdrawal discomfort. It isn't a race - if you treat it as such you will end up going too far too fast and developing a flare, necessitating a return to a higher dose. Exactly what you don't want.

What dose are you on? You haven't said have you? It should improve as you get used to it - it is the start that is worst! And I suspect reducing the Fenatanyl dose won't change much - if it does it will be with non-PMR problems. Few people find painkillers help them at all, even opiods. Which brings me to another gripe: why will doctors dish opiods out but are terrified of using pred carefully?

[Zebedee44]

I was on Fentanyl for about two months before the PMR was diagnosed, after I came off the gabapentin which I thought, in my innocence, was causing the weakness, stiffness and inability to get out of bed. It was prescribed by a Consultant Neurologist for neuropathic pain in my sciatic nerve and neck. It wasn't working.

so I stopped the gabapentin quite quickly and suffered withdrawal symptoms. I also found I had an ovarian cyst, which had to come out, and the Fentanyl helped with the pain of the hysterectomy.

I'm hoping that I will come to recognise the PMR pain separately from other pains in my body, and that I will be able to tell if the tapered dose is working. I agree that the Doctor probably expects a faster taper than is realistic, and I challenged him on that today, especially as he started me on 50mg for the first 3 days, then down to 25 mg for 10 days, 20mg for 14 days, and 15mg from today for the next three weeks. Then three weekly tapers of 5mg, which I think is a bit optimistic. He is worried about the jitteriness! I am just worried about everything!!!

[PMRpro Ambassador in reply to Zebedee44]

Oh good lord - 50mg is totally OTT, 20-25mg is the recommended maximum starting dose for PMR, 50mg is for GCA. No wonder you are jittery!

If the 15mg is OK stick there for at least a month, then reduce by absolutely not more than 2.5mg and see how THAT goes. Better would be 1mg at a time and if each 1mg works you can try the next. But not any more often that every 3 to 4 weeks down to 10mg. Then really slow down.

This is NOT a short course of pred and stop disease - maybe he is one of the "hit it hard" brigade who think by using a high dose it gets rid of the "disease". It doesn't work. You are going to be on pred for the next couple of years at least - not a couple of months - until the underlying autoimmune disorder that is causing the inflammation burns out and goes into remission. There is nothing neither you nor he can do that will speed that up. It takes time. And slowly does it - that way you don't have flares.

In the replies section of that "reading list" is a slow reduction approach. It works - and most people work their way through it without having a single flare until they get to the end point: the lowest dose that manages the inflammation as well as the starting dose did until the autoimmune bit burns out. That is unlikely to be under 2 years and far more likely to be nearer the 4-6 year time frame.

[Zebedee44]

Will I recognise a "flare"? How does it present?

[HeronNS in reply to Zebedee44]

Don't worry, you will know. It's called a "flare" for a reason, because if you liken PMR to a simmering fire... well, you get the picture. However there is a caveat. Too rapid reduction in pred can lead to steroid withdrawal pain which is just like PMR. In general they can be distinguished by the steroid withdrawal occurring almost right away, and return of PMR building up over a few days. This is why we try to taper very slowly. That way most if not all the steroid withdrawal pain is avoided and you can find your lowest useful dose to control PMR more easily - without flares!

[Zebedee44]

Thank you, i have just been reading the slow reduction approach. Sadly my GP has made his feelings very clear about getting too much advice from forums, but He knows I have been reading books about PMR. If I get to see a Rheumatologist reasonably soon I can rethink the taper, I'm pretty sure his version won't work.

[HeronNS in reply to Zebedee44]

Check this page. Maybe print off the Bristol paper as a gift for your doctor?

patient.info/forums/discuss...

[PMRpro Ambassador in reply to Zebedee44]

You could tell him it is issued by the PMRGCAUK northeast charity with the blessing of several consultant rheumies, some of whom are using it in a clinical study.

[Zebedee44 in reply to PMRpro]

I certainly will, Thank you. At present I only have 5mg tablets so tapering down at 5mg intervals seems sensible. He wants me to reduce again in three weeks, after the next set of blood results, which I queried with him immediately. From what you are recommending, it may be quite a while till I make the next step or start needing to reduce by one milligram at a time.

The slightly manic behaviour is hard to cope with, I thought it was the onset of diabetes, but my glucose levels were ok. I know I have a tendency to somewhat bipolar behaviour after a very long history of anxiety and depression, but I'm not enjoying feeling so permanently HIGH! and cant even have a brandy to calm me!!!

[PMRpro Ambassador in reply to Zebedee44]

"and cant even have a brandy" - why not? I don't really do brandy - but I'm sitting typing with a glass of Maltese wine next to me! I wouldn't suggest lots of it but a tiny glass won't interfere with pred. It does depend what else you are on of course...

You can easily try 2.5mg - chemists sell pill cutters. The only tablets you can't cut are enteric coated/gastroresistant ones.

[Zebedee44 in reply to PMRpro]

Hurrah, a small brandy might settle me, although it seems to have the same effect on my shoulders as coffee, they get tighter!!

Maltese wine, I didn't know you could buy it. My family had along love affair with Malta after the British Navy days. I'd love to get hold of Kini, The herbal soft drink.

[PMRpro Ambassador in reply to Zebedee44]

You probably can't outside Malta - but that's where I am at present...

[Rugger in reply to Zebedee44]

I don't know if anyone has said to ask for 1mg tablets asap. Also, the rule of thumb after your initial reductions from 50mg etc is to never reduce more than 10% of the previous dose. I was on 15mg for 2 months (too long maybe, but that's what my GP advised!) but then reduced to 13mg for 1 month and the same for 12mg, 11mg and 10 mg, then started the DSNS taper from 10 downwards taking 26 days for each stage - but as everyone says - monitoring my symptoms at each reduction. I'm just about to start the 6mg taper. This is all since diagnosis in May 2016.

I was sent my blue card by the PMRGCA charity when I sent them my £10.

Take care, Sue

[Zebedee44]

Thank you HeronNs,

Would you consider a reduction from 20mg to 15 mg too big after 14 days, should I do the slow reduction method for this step? This is day 2 for me at 15mg, already feeling achy!!!

[HeronNS in reply to Zebedee44]

I can't really say. I know some people have managed it. Although as you are also dealing with potential withdrawal symptoms from reducing the fentanyl I think it would be sensible to slow down the taper. As PMRpro says, IT ISN'T SLOW IF IT WORKS. My own experience was that I started at 15 mg, where I stayed for five weeks, then tapered, doctor's instructions, by 1 mg per week until I got to 9. At that point I felt returning pain, went back to 10 for a couple or three weeks and then started the dead slow taper. I do know that a lot of people who post here are told to taper by 2.5 from 15, but probably not as quickly as weekly. So there are all sorts of ways to do it. It seems sensible if you are told to taper from 20 to 15 but to stay at 15 for a few weeks that you might consider breaking it into two, so drop by 2.5 for half the time and then by a further 2.5. But it's imperative to slow down drastically once you reach 10, no matter how well things may have gone before, because each drop is going to be a significant bite out of your total dosage and you will be closer to the level which you need to control the symptoms. Those three weekly tapers of 5 mg each are simply not the correct way to treat PMR and will almost certainly leave you worse off than ever.

A sensible doctor will allow the patient to determine the speed of reduction, based on symptom control. I've come to understand how very lucky I've been with the treatment I've received. By being allowed to proceed at my own pace I've reduced my pred dose to 2 mg. It's taken just over a year and a half to achieve that level, but I've been at 5 or below since last April, so have really been able to minimize side effects.

[Zebedee44 in reply to HeronNS]

I can't thank you enough for your support in this, and I totally agree with what you are saying. I think that I am so accustomed to being in pain that I am not recognising the added pain resulting from a reduced dose.

I haven't reduced the Fentanyl yet, but I am already aware of tightness in my shoulders, upper arms and back of neck today.

For whatever reason my doctor started me on such a high dose I have a long way to go, and he saw yesterday how jittery I have become so was keen to reduce quickly, but he will have to take the lead from me in that. I think he respects that I am very much adopting an active role in treating myself. He must, I'm not about to let my life fall apart if I can maintain the active style of living I enjoy.

Thanks again for your help, HeronNs,

Chrissie

[PMRpro Ambassador in reply to Zebedee44]

For most people it would work OK - it did for me going from 15 to 10mg because I had only been on it for 2 weeks too. The problem gets worse the longer you are on pred and the lower the dose you are at. But another primary aim of the DSANS approach is also to identify the dose you need most accurately without causing flares. Once you get into a yoyo pattern of dropping the dose, going back to control the symptoms and trying again you make it increasingly difficult to reduce in future. The chances are that 10mg may be OK but 5mg is not, you need something in between. And sorting out where the way most GPs go about it is fraut with problems. Because they use pred as short term tapers with 5mg drops for other things they think that is how it works in PMR. Unfortunately for the patients it often doesn't!