Tapering dilemma

[tinwoman]

Hello have not been on the site for a while but wonder if you'll forgive me and give me the benefit of your experience and excellent knowledge. I have been tapering using slow method and got down to 7 but now feel extremely stiff and fatigued. The stiffness is as bad as it was at outset of PMR in 2014. I have a struggle with GP and Rheumatologist they say my inflammatory markers up 'a little' and because I am female and 65 with osteoperosis they want to keep steroid use to minimium. Understand this but quality of life is suffering and I am miserable. Sure I read some previous post about mis match between symptons and blood results? Also any thought on osteoperosis? Any help appreciated.

[piglette]

I don’t understand why your GP and rheumatologist are happy for you to be in pain just to keep the steroid dose down which they gave you them in the first place!! As everyone says symptoms are paramount, if you hurt think about increasing your dose to get the PMR under control irrespective of what your bloods say. If you are in pain you may as well not take the pred if you are not allowed to increase the dose.

[tinwoman in reply to piglette]

Thanks piglette sometimes whe you are on your own against professioanls you lose perspective and common sense.

[RunRabbitRun in reply to tinwoman]

It's hard when you've been bought up to think professionals know best, as you get older you realise they are human and don't know everything. I was like you last month, stiff and miserable, all it took was 0.5 mg to bring me back to feeling good again.

[tinwoman in reply to RunRabbitRun]

Yes now realising I can fight my corner better than I have been doing instead of rolling over to the professionals

[bunnymom in reply to tinwoman]

Good for you! Very empowering isn't it? That alone makes me feel better.

[DorsetLady PMRGCAuk volunteer]

Hi,

Totally agree with piglette re doctors’ comments - they do have some strange ideas. Obviously nobody wants to be on a higher dose than necessary, but being on one that is too low is pointless.

Symptoms are key - and if you have stiffness then you are not on enough Pred. The fatigue may be a symptom, but it could also be because your adrenal glands need to awaken around that dose, and after 4 years of sleeping they are probably a bit reluctant.

Has the stiffness just come on at 7mg, or has it been creeping up on you? If you have enough tablets can you increase to say 10mg for a week or so to clear out the built up inflammation - and then drop back down to 7.5mg or 8mg.

Are you taking anything for osteoporosis? You should be on VitD/Calcium supplement at the very least. Has it deteriorated during the Pred years?

[tinwoman in reply to DorsetLady]

Thanks Dorset Lady the stiffness has been creeping up and guess I've been ignoring it in my effort to reduce pred. I take a cacium supplement and vitamin d and have twice yearly injections of Denosumab. Bone density scans show no further deterioration. Thank you for advice I do have some spare Pred so will do as you suggest and now have confidence to go back to GP

[PMRpro Ambassador in reply to tinwoman]

So if you are on denosumab/Prolia - why are they being so silly about your pred dose? The point of the Prolia is to protect your bone density SO you can continue with the pred to manage your PMR.

[PMRpro Ambassador]

If your inflammatory markers are up it doesn't matter whether they are up a little or a lot - the inflammation is no longer being managed fully. If you leave it then the drip drip of excess will eventually fill the bucket and spill over - and you will be back where you started. And needing a much higher dose to get it under control.

Have you had a dexascan? How bad is your osteoporosis? Has no mention been made of protective action if you have osteoporosis? And immobility due to PMR is a major risk factor for osteoporosis and the disability a risk factor for falls.

You need more info from them - and a sensible conversation.

[tinwoman in reply to PMRpro]

Thanks PMRpro. Dexa scan shows no further deterioration in bone density and I do take a cacium supplement plus vit D. as well as twice yearly injections of Denusumab. When on the correct dose of pred I am able to do exercise that is recommended for osteoperosis. Honestly now I can see things more clearly frustrated with myself. Thank you again for your help.

[PMRpro Ambassador in reply to tinwoman]

So - as I said above: "So if you are on denosumab/Prolia - why are they being so silly about your pred dose? The point of the Prolia is to protect your bone density SO you can continue with the pred to manage your PMR."

They really do need to get their brains in gear!!!!!

[tinwoman in reply to PMRpro]

Me too !!

[PMRpro Ambassador in reply to tinwoman]

Possibly - but they are the professionals who are supposed to understand these things!

[ClarkB in reply to tinwoman]

What is Prolia and denosumab? I was only prescribed Alendronic acid in tablet form, which I don’t take due to other health issues. When I enquired about alternatives, my GP said they were too expensive. I have osteoporosis too, prior to my getting Polymyalgia. I was also prescribed Lansoprazole alongside steroids. However, I have read that “It is also linked to an increased risk of bone fractures particularly in older people”.

I do find that when I’m sitting around, I ache so much more. If I go for a walk, the pain seems to ease off somewhat, the further I go (with a few rests en route). I am not very good at doing prescribed exercises ☹️. It’s good that you follow the recommendations for osteoporosis, and for those people who have always gone to exercise or yoga classes.

[Zhenya]

It seems to be the luck of the draw who we get in the way of GPs and rheumatologists. Last week I went to see the rheumatologist at The Royal London Hospital for my 6-month checkup ( I am 71 and have had PMR for 4 years). He said that quality of life was paramount over everything else and was quite happy for me to self manage my dose, increasing and decreasing as necessary. He said he trusted patients to know their own bodies better than he did.

I wish you luck with your GP I really do. Could you perhaps (tactfully) mention that you have heard of other people’s experiences on this forum which are different from yours?

[ClarkB in reply to Zhenya]

I was interested to hear that you go for a 6 monthly checkup to the Rheumatologist. I saw one initially, and had a further consultation concerning another issue. It wasn’t mentioned that I have further checkups. I emailed him at one point with a dosage problem, and he did email back. I don’t have checkups at my GPS either, only seeing them when there is a specific problem. I wonder if this is the norm?

[Zhenya in reply to ClarkB]

When I leave the hospital they give me another appointment for 6 months’ time. This has been the case for the past 4 years and I thought it was the norm. I have had 2 Dexascans in that time and blood tests with each visit. I think I must be very lucky.

[ClarkB in reply to Zhenya]

It would seem so! I somehow feel lost in the system. Apart from the difficulty of trying to see any doctor, explaining yet again why you’re there to someone who does not have time to read your notes, and then within the 10 minute slot, it hardly seems worth going. I do go for a monthly blood levels test, but otherwise am in the dark, unless I visit and take advice from this site or go online!

[BonnyQuine in reply to ClarkB]

That sounds just like my GPs. They have no time and little interest. I think somebody does look at the blood results, but as there doesn't seem to be much correlation between those and how I feel, it doesn't seem to help much.

The last GP I saw sighed impatiently, said 'Yes, it's a chronic condition', and gave the strong impression that I was wasting his time.

Didn't think I'd see the rheumy again either, but have just received a letter asking me to make an appointment - well over a year since the last one.

When at my lowest, I've been very grateful for this forum. It has been a good source of information and support. (GCA Nov '16)

All the Best.

PS: I did find a good ophthalmologist, who makes me feel that my eyes are being looked after, and that certainly helps.

[PMRpro Ambassador in reply to BonnyQuine]

Yes, it is a chronic condition - but it can vary over time and flare. His job is to help you manage such flares and prevent them getting worse. I do feel sorry for many GPs because they are strapped for time and they must get depressed as a result - but they chose the field and many others seem to manage better. If they could only get the concept that if they deal with us properly in one appointment we are less likely to return again and againa and again to get the treatment we needed in the first place.

[ClarkB in reply to BonnyQuine]

I replied to your message, but it appeared faded and wouldn’t send!

I’m now suffering from a bad chesty cough, which seems to have taken over from everything else and makes me feel weak and sweaty. PMR is having to take a back seat for now 🤧!

[BonnyQuine in reply to Zhenya]

You are lucky indeed. That's how it ought to be.

[piglette in reply to ClarkB]

I think you get into a sort of system. My GP decided I should go to a rheumatologist as I had some problems with my hip and he said it was PMR, in fact I needed a hip replacement. Anyway once I started going I was just booked in every six months. It has been a total waste of time, as the rheumatologist was pretty useless and would ask me if I had headaches, jaw pain etc and write the answers down in a lined book she had, which probably never got transcribed anywhere. In the end when I was sent the new date I phoned up and twisted the truth a bit saying I did not need to see her any more.

[ClarkB in reply to piglette]

My last communications were by email to the Rheumatologist. When I visited last April it was a Q&A session, so it seems that without physical examination the email works the same.

I am suffering from a bad mucusy cough at present which makes me feel debilitated, and it’s taken over from my PMR!

[piglette in reply to ClarkB]

Unfortunately in my area the doctors never seem to have heard of emails. In fact they do not seem to have learnt communications above hacking out bits of stone yet. It really is very frustrating.

[ClarkB in reply to piglette]

There is no email option at my doctors. We can request a phone call. I was prescribed antibiotics over the phone for my cough and fluey symptoms . (Lovely on top of PMR pains!) I was a bit concerned when my prescription came, with a leaflet on what to look out for in sepsis. I felt I could have ticked most of the boxes!

My Rheumatologist is happy to email me, and even responded during a weekend and one very early in the morning. I haven’t emailed since last summer, because I only want to do so when I have a serious query, rather than for every little gripe! I prefer email to phoning as I wouldn’t feel as relaxed, and would just rattle on!

[piglette in reply to ClarkB]

My rheumy (ex rheumy) does not even do phone calls. She got me to have some xrays and blood tests, I asked my GP’s surgery for the results but could not get them as she had not opened the emails to her for checking. In fact she still had not looked at them three months later. A total waste of money.

[PMRpro Ambassador in reply to Zhenya]

Brilliant - time for him to undertake some education of others!!

[Blondenettie]

I want to share a positive. Was diagnosed with PMR a little over 2 years ago. Was misdiagnosed initially and landed in the hospital where I was diagnosed. Luckily I live near Philadelphia where some of the best hospitals and MDs are. Was started on Prednisone 60mgs and leflunomide. Tapered 10mgs. every month until I reached 10mgs. and then tapered 1mg. every month. I have osteopenia and was prescribed fosamax along with calcium and vitamin D which I was already taking. The very best news is that I have been off prednisone for one week and feel great! There really is light at the end of the tunnel. Best to you. You’ll get there