Picking your knowledgable brains....

[Trixiechamp]

Hi all

Hope you are enjoying the weather here in Blighty, I have to say I have been trying to avoid the heat as my internal thermostat appears to be set to boiling permanently whilst on the roids! Anyway I digress...I am seeing the Rhumey on Monday for follow up on all the tests I've had.

A couple of questions I have, I noticed on the letter to my GP he has mentioned he will talk to me about osteoporosis prophylaxis (googled it!) and I'm unsure as to whether to take this, especially without a dexa scan prior and as I'm 45? The side effects are a concern, as is the recent studies on the PPI's that I'm also thinking about replacing (with yoghurt?) now that my steroid dose is so much lower. This particular concern is because my father has and both grandfathers had fatal heart conditions and I had cardiac arrhythmia when I was pregnant with my 2nd and had to be admitted to hospital for treatment. My cholesterol has gone up to 7.6 also. Has anyone else refused the bone protection drugs and PPI's and had any adverse effects?

Secondly, having like many of us had a number of differing diagnosis and the added complications of no inflammatory markers present, would you be inclined to go back to the recommended Rhuemy that I saw privately who thought I had RA/Lupus type of autoimmune or just stick with the NHS consultants opinion of PMR with GCA overlap? I'm so confused because at the private appointment, everything I learned from these very knowledgeable and experienced members on this forum was challenged, which left me totally at a loss as to what to think.

So the questions is, if it was you, what would you do? I'm being pressured by friends/family to go back to the private consultant as the consensus from them is that he would know best despite what the results are from my appointment on Monday??

But I do feel all my symptoms fit the PMR/GCA diagnosis. I know I'll probably never have a definitive diagnosis but tbh I'm tired of all the opinions and contradictions, so I'm not sure another private (and expensive!) consultation will be productive.

Sorry for another long post...my brain is in overdrive...

Thanks Tanya x x

[kellykel]

Boy, can I relate. Not necessarily to the details, but the back and forth over the year on whether I have GCA or not. You are right - it's crazy making. This neurologist says yes, absolutely, clinically diagnosed regardless of no inflammatory markers - I have classic symptoms mostly.

On the other hand, after being at 40mg pred for 6 months solid, I am unable to taper even 5 mg. without the pain coming back. This leads the neurologist and rheumatologist to think it may be something different than GCA.

I am being asked to taper off prednisone over 3-4 months and then have the biopsy. God knows what that will show due to the steriods.

Not knowing; contradictory opinions; lack of progress, etc. is disheartening and exhausting.

I wish you the best of luck. This is a very difficult challenge. Unbelievably hard I am finding. Emotionally, mentally, physically. And it seems no end in sight yet.

[Trixiechamp in reply to kellykel]

Ditto, I was rapidly reduced from 60mg to 10mg over a 5 week period based on the private consultants and it was really hard going. The other consultant put me back up to 15mg but honestly I feel like on Monday I will ask him to increase again to 20mg as I am getting all the symptoms back pre steroids. It's exhausting and I feel like my body is being stressed even more, hence my reluctance to take even more drugs...

X

[kellykel in reply to Trixiechamp]

What are your symptoms coming down? I am just getting massive fatigue. Would love to know what you experienced!

Also, did the steroid side effects go down quickly too?

Moon face, sleeping, emotional roller coaster?

[Trixiechamp in reply to kellykel]

Yes exhaustion was a massive one, tbh i can't even describe all the symptoms as I was in a bit of a pickle mentally and tended to shut myself away and sleep! I didn't want to speak to anyone, not even my closest friends and I had horrendous shakes, headaches, my legs were really weak and everything was exhausting, even just walking upstairs. It really was only in the last few weeks that I felt more like myself and everyone was saying I looked and sounded better. My face was ridiculous, my weight is still huge and I still have a fat face but everything is less 'tight' now. I can post pics pre and post on another post if you like? X x x

[PMRpro Ambassador]

And exactly WHY do THEY think a private rheumy would know better than the NHS one? Private rheumies work in the NHS for their day job - and so does Rod Hughes. Not everything that he said at your private consultation was challenged - I explained then why he wanted you to reduce so quickly, to be able to see the reality. You also said he was going to write to your NHS consultant - have you seen them since then?

You have mentioned about pain at night now your dose is lower - tell us a bit more about that please.

[Trixiechamp in reply to PMRpro]

Yes absolutely, I explained at the time that he wanted me to reduce down quickly in order for me to get to my other appointment and have the blood tests...(which unfortunately didn't include the ESR before I went up to 15mg) but my main confusion was his comments on it being highly unlikely due to my age and that PMR doesn't affect the hands and feet or generally below the waist. He is an NHS consultant yes you are right but I think because i was seeing him on recommendation as experienced in PMR/GCA THEY see that as the reason why I should listen to him rather than the other consultant. Also because I guess when I have seen people before and after I dropped the steroid dose they saw the huge difference in my appearance and condition and came to their own conclusions.

It's not the fact he is private (as he said he would see me on the NHS) more than his expertise. He didn't write to the consultant and to be honest I tried to show the guy Mr Hughes scribbled notes and he really wasn't interested.

Symptoms I'm having now are stiffness (I can't put my socks and underwear on without great difficulty) pain in the shoulders and hips/lower back, (for example I couldn't carry a cup of tea on a short walk around the garden) jaw and tongue pain on eating and pain in the feet when walking and in my hands when used in repetitive tasks. (Not fingers). Not really any night time pain apart from a bit in the hips if I don't move around enough but nowhere near as bad as I was prior to starting the steroids. None of the symptoms are as bad in fact, but painful enough to impact on daily life.

As I said, I'm quite happy to go with the current consultants opinion, I think the general lack of understanding about the condition is making my well meaning loved ones over protective as they have seen what the steroids have done to me and just don't get that it was a necessary evil.

I guess I'm just wondering if I should actually see Mr Hughes again and see if he has a different opinion now I'm not on the high dose?

[PMRpro Ambassador in reply to Trixiechamp]

I suppose that is the obvious answer if you can afford it - especially since what you describe is absolutely typical of PMR but probably also of other things. It would bring some clarification I think.

I would love to know what made him say PMR doesn't affect below the waist - since stiffness in the hip girdle is regarded as a fairly significant criterion for PMR. And I think I mentioned that the Leeds group under Sarah Mackie are of the opinion that PMR can affect hands and feet - and they have worked together on projects.

This is a massive problem throughout PMR of course - no two doctors seem to agree on anything! We on the forums sometimes see commonalities that they don't - because we hear far more stories from far more people with (probable) PMR than any rheumy does. But as patients we rarely have much say.

[Marilyn1959 in reply to PMRpro]

This is really interesting PMRpro. All my symptoms were originally 'below' the waist sending GP, it seems, on the 'wild goose chase' called diagnosis. Months lost in sig+ pain worryingly increasingimmobility.

Interestingly it was only when my pain and stiffness went to upper arms and neck, and I googled these symptoms, that PMR entered the realm of possibility. Previously symptoms relating to lower body - thighs, hamstrings, groin focus yielded no hint of PMR.

It may be that specialist Rheumy would have picked it up earlier anyway, but 'Google' response would indicate upper body signs recognised more immediately than lower body signs?????

[bunnymom in reply to Marilyn1959]

I also started out with lower body problems. Stiff thighs, couldn't put on socks. Then shoulder pain came later. All over body stiffness in the morning and sometimes hands feel swollen but not knuckles. Not ra. Been tested for that.

[SnazzyD]

Hi,

I'm 54 and refused to even think about bone drugs until I'd had a DEXA scan. I asked how quickly my bones would be affected and they said after about three months when I started on 40mg Pred, so there was time to arrange it. It turned out I could just about do with calcium/VitD supplements and rescan in two years. There are alternatives to PPI's such as Ranitidine and there are lots of posts on this subject here. Personally I use Gaviscon but I'm using enteric coated Pred. Yoghurt was never an option as I can't have dairy.

[Trixiechamp in reply to SnazzyD]

Ooh wonder if I can persuade my GP to prescribe the enteric coated Pred...thank you for your advice x

[PMRpro Ambassador in reply to Trixiechamp]

There is a post recently about the costs - it is actually cheaper but they will almost certainly claim it costs too much!

healthunlocked.com/pmrgcauk...

[Hidden in reply to Trixiechamp]

I started on coated ones then into non ....no idea why....but agreed to put 5mg coated back on repeat. No quibble just said I was getting some probs. Been on ppi for years because of other issues...only recently realised the potential long term effects. Tapered them off and stopped aspirin they were meant to help with. Waiting for scan to decide next step. Don't know if this helps. 😊

[Judy211 in reply to SnazzyD]

Hi SnazzyD. I don't have dairy either but I've discovered coconut yoghurt...made from coconuts and free from dairy and sugar...it does the job and tastes great. Bit pricey so I just have a couple of dollops...on porridge. It is like having pudding for breakfast!

[SnazzyD in reply to Judy211]

Yes, it's good stuff but about £3.50 for 250g! I use Coyo. I tried the cheaper soya/coconut yoghurt but it had that smell of wallpaper paste taste in the plain sugar free flavour.

[ValFF53]

Paying to see someone privately doesn't ensure the correct diagnosis, either.

I was so fed up waiting for my NHS appointment that I paid to see a Rheumatologist privately. He diagnosed arthritis and gave me a prescription accordingly.

The medication did not help and I was so pleased that I kept the NHS appointment . PMR was diagnosed and within 24 hours of starting Prednisolone, most of my pain and stiffness had gone!!

Best wishes

[Estellemac]

I would stick with NHS. Most private consultants work for NHS. Just keep chipping away saying things such as are the tests always the best way to determine the problem or are there other ways to assess my symptoms. My dexa scan came back as good but I went on Alendronic Acid and Statins. My mother had a heart condition and a triple bypass but I have had a full check and it came back clear. Your GP shouldn't advise it if you are at risk? I have no issues with the meds. Doesn't mean you won't. Private consultants unless PMR is a specialism are no more informed than we are on this forum in my opinion. They should join in the discussions. Having to pay when you might not be working has a knock on effect eventually and will you be better off? Bad enough being ill without needing to make complex decisions.

[Trixiechamp in reply to Estellemac]

Exactly, the only reason I saw him in the first place was because I had been put on 60mg of steroids by my GP and was having an awful time and he had previously refused to refer me...once I had seen a locum who did an urgent referral we decided that 9 more weeks before I saw the Rhumey was too long to get any kind of answers. Hence the private appointment. I cannot afford to see Mr Hughes again privately at £260 an appointment BUT he did say he would see me on the NHS if I wanted to. The issue I have is whether or not I stick with the Rhumey now that I have eventually seen him, or go back to Mr Hughes...but I don't want to cut my nose off to spite my face if that makes sense? I think when I have my follow up tomorrow maybe I will be in a better position to decide what to do moving forward.

[Estellemac in reply to Trixiechamp]

My Dr didn't want to refer me to a specialist but I forced the issue. Then the Rheumatologist told him I was doing ok on my own!! Due an operation soon and PMR could cause complications Rheumy said the Orthopaedic Surgeon can talk to him if he has any concerns. If he decides to operate then it must be ok

Why do we pay NHS contributions???

Waited so long for the op (hip replacement) for PMR to stabilise and is manageable I can't get my job back now. I prefer PMRGCAuk as my guidance and DR Google as my new consultant. But it's not forever. Looking forward and staying positive.

[PMRpro Ambassador in reply to Estellemac]

"Why do we pay NHS contributions???" - they are actually exceptionally good value for money!

Your NI contribution is not just for medical care - it is for state pension entitlement, unemployment benefit and statutory sickness pay as well. In the UK I paid the self-employed rate which was under £10 per month and was just for pension and medical care, nothing else. The direct equivalent here where I now live in Italy was about £100 per month - and I have co-pays for all medical care except GP and hospital inpatient care unless exempt. PMR is not exempted!

[Estellemac in reply to PMRpro]

My thing about NHS contributions was I am entitled to see a consultant specialist and he decided I was fine on managing on my own. My doctor who does not have that specialist knowledge asked if I realised the problems I had caused by requesting a consult and how much these appointments cost when I was managing ok? He referred me. I explained I was fully aware as I could see a consultant privately with my in work health care plan but thought I was entitled under the NHS as he was not a specialist and a consultant would be better placed to put my mind at rest as I also managing another life changing disability at present that is extremely depressing. I can't fault the UK health service in the past but a year out of my life waiting for appointments and solutions makes me disgruntled and miserable. Not to mention I won't be able to work again for a long time.

Apologies to anyone offended by my comments I am just grumpy miserable and fatigued will everything whilst trying to remember how lucky I am it's not terminal, thing will get better I must practice patience. It is what it is.

[BonnyQuine in reply to Estellemac]

It's no wonder we get grumpy. How could we not? And if being miserable and fatigued weren't enough, emotional volatility is yet another side effect of Pred. Don't apologise for letting off steam. This is as good a place as any to do that.

Take care.

[Retailmonkey in reply to PMRpro]

And once you are over retirement age you make no NI contributions at all. Even with the employers contribution it goes nowhere near to covering what we all get in all of those benefits that you list. Sadly it means that, along with all the other burdens like higher education loan repayments, it is the current younger generation that are paying for our benefits along with the restrictions on Health Service salaries

[PMRpro Ambassador in reply to Retailmonkey]

The NHS is not merely funded by the NI contributions - it is also funded by general taxation. I know not everybody does - but we still pay a fair bit of tax.

[Jackoh]

Hi Trixiechamp- just to answer a few of your queries. I refused AA and asked for dexascan. I also don't take a PPI but just take yoghurt with all my tablets. My blood markers also do not show any problems- CRP or ESR.

I also see Dr Hughes. Have seen him twice, privately and now see him on NHSfrom last week. I wonder why you paid £260 for consultation? I can't remember the exact amount but don't think it was that much. The initial consultation is also more and the subsequent appointment should not be so expensive. This week I went to see him on NHS. Did wonder if I'd have a different consultation- less time, less attention etc going from private to NHS but it was exactly the same. I suppose you have to decide which way to jump- Other NHS Consultant or maybe Dr Hughes urgently private while being put on his NHS list- which didn't take too long - about 8 weeks. All the time you straddle both it must be more confusing. I suppose it's who you have more confidence in. If you were seeing both on NHS who would you prefer to see? Just looked up costings - new consultation £220 - further consultations - £130 to see Dr Hughes.

Jackie x

[Trixiechamp in reply to Jackoh]

Definitely paid £260, I'll see what happens tomorrow and how much faith I have in this consultant....

[Jackoh in reply to Trixiechamp]

Hi Trixiechamp- thought about this afterwards( head not working correctly yesterday or perhaps even today!!!) that I went over a year ago for first consultation- can't believe that !!! So obviously charges can vary over that time. Jackie x

[Trixiechamp]

Just had a phone call...appointment cancelled as consultant is sick, now waiting for next available date, hoping that it's not too long, feeling very emotional 😞

[CT-5012]

Hi Trixychamp,

About 15 years ago I had thyroid eye disease and was on 60mg pred and also had osteoporosis preventing meds which caused IBS I would be very careful. Am now on preds again for PMR I have not been offered them this time round, perhaps the docs fear an explosive reaction! But everyone is different. I have never been offered a DEXA scan.

All my very best wishes I hope you get everything sorted soon.