Seen Rod Hughes...more confused than ever!!

[Trixiechamp]

Hi all, I thought I'd let you know, saw the consultant Rod Hughes at Chertsey, he wants me to lower the steroids as quickly as possible and is not convinced by GP's diagnosis...not sure what to think but if I can get off this toxic dose we can start to test for other things as it's all masked by the meds at the moment. Still seeing the rhyuemy at RBH on the 12th and he will write to them, he'll also see me as an NHS patient if I prefer to see him so we'll see how it goes. Going to be a horrible few weeks reducing the steroids but hopefully long term for the better! Bit confused tbh as he said it would be very unlikely to be PMR due to my age which contradicts everything I thought I knew.

He feels it's more a RA/Lupus type thing going on, definitely autoimmune and a bit frustrated that GP didn't pick it up earlier before the stupidly high doses of steroids as we are now having to start from scratch.

I'm going to have to trust him and go with his advice of reducing from 60mg by 10mg a week (again contradictory!??) and see what occurs....gulp!!

Not sure how I'm feeling TBH

[SheffieldJane]

Gosh poor you, what a horrible dilemma. I would insist on tapering though PMR or not your body has become reliant on steroids. How old are you? I really hope that's not all he's going on. Youth pops up on here all the time.

Second opinion? Or third rather?

Good luck - yikes!

[Hidden]

Just seconding SheffieldJane, seen this problem before.

I'm sure it will turn good in the end!

[Hidden]

didn't mean to reply twice, just could not think of any thing to say, just flabbergasted.

[Trixiechamp in reply to Hidden]

I'm 45...he has been recommended by many on here as excellent so not sure where my head is at.....what would you do if you were me PMRpro and DorsetLady? Sorry I know it's a loaded question....

[Celtic PMRGCAuk volunteer in reply to Trixiechamp]

He was my rheumatologist and is mentor to the support group I facilitate. He has been, and still is involved in research into PMR/GCA. He was my second opinion when a previous Rheumy failed to diagnose me. Another contributor to this forum some time ago was struggling to get a diagnosis for his pain and eventually sought the opinion of Dr Hughes who diagnosed an episode of inflammatory arthritis and sorted out his pain. Although I really do sympathise with your present predicament and the fear of worsening pain, sometimes going back to square one in the case of a complicated condition is the only way to go. If it was me I would put my faith in Dr Hughes, and I wish you all the best.

[Trixiechamp in reply to Celtic]

Yes that is what I am going to do, I am seeing the rheumys at Royal Berks next month so hopefully they will also be able to shed some light...

[trish29 in reply to Celtic]

Well said Celtic .. Dr Hughes does'nt give up on me after long term PMR and was i lucky enough to find you and The Chertsey Support Group . trish 29xx

[Celtic PMRGCAuk volunteer in reply to trish29]

I so agree, Trish, Dr Hughes will never "give up" on you, nor will all your friends in the support group and, importantly, he gives patients the confidence not to give up on themselves. Keep smiling, and hope to see you on 6th June.x

[trish29 in reply to Celtic]

Thank you Celtic ..You are my inspiration after all you have been through and your words are comforting . I have nearly given up on myself recently but i have been waiting for a very Special Lady GP who is PMR friendly to come back from Maternity Leave and because of my 2 recent visits to Dr Hughes my surgery rang me and said i needed a 1to 1 with a Practice GP and luckily was able to get a double appointment with the one i wanted on tuesday this week..I last saw her in Sept 2016 and she couldn't believe i was worse and had been up and down with the steroids and that my pain level was still so high, she issued me with the Butran Patches ok'd by Dr Hughes and that evening my pain level had subsided substantially ,she also suspected that i had a water infection and sent a specimen off. Yesterday ..Thursday she rang me at 8am and confirmed the urine infection and i start on a New course of Antibiotics today The ironic thing is I have seen numorous Gps and Locums through the year and as usual it was due to the steroids and my weight etc , but no tests were done. When i got home I actually cried because someone actually believes in me and all i am trying to do to get down further on the steroid and get a Better Quality of Life. Lately no one wants to listen to me .. Family are just too busy and my condition gets on their nerves .This condition has taken so much away from me and i just want New Sufferers to keep pushing for their tests that are needed and not to take No for an answer..I pray that this Wonderful caring GP stays at our Medical Practice for a long time . Both her and Dr Hughes have ok'd it for me to go back to my Bowen Therapy which i have missed so much . Sorry its a long post but PMR/GCA needs to be more recognised and leaflets etc put out at GP Practices and Hospitals etc. Hoping to catch up with you at the next meeting on the 6th June. Love trish xxx

[Celtic PMRGCAuk volunteer in reply to trish29]

So sorry to hear about the UTI, Trish - they do seem to be flavour of the month at the moment as I am hearing from so many people who are experiencing them. I do hope the antibiotics quickly do the trick. Apart from that, it's good to hear of quite a few positives coming out from your appointments with Dr Hughes and your GP. Bet you can't wait to get back on the Bowen therapy - enjoy! We're away from home with family at the moment -taking care of a 22 month old and a four month old whilst Mummy and Daddy recover from a 9 hour flight with the little ones in tow. I guess we'll need a couple of days to recover when we get back home!! See you on 6th June.

[PMRpro Ambassador in reply to trish29]

I do get SO annoyed at lazy GPs who won't send off a urine - it's as if they would have to do it personally and pay for it!

At least she won't be going off on maty leave again for a while. That was the basic problem at my Durham practice - the PMR-orientated GP had 2 or 3 lots of maty leave so I never saw her as I believed in continuity of care. Now I don't care - sometimes locums have their better points. And when they don't, you don't have to see them again.

Hope you feel much better very soon now you have the right antibiotic xxx

[trish29 in reply to PMRpro]

Hello PMRpro ..i have sent a reply to Piglette explaining about Dr Hughes giving me the patches . When the antibiotics have finished i will be having new Blood tests done to see how the PMR is doing after all the medication. Hopefully now i will be seeing her for a follow up and she says that her Family is now complete with 3 Boys.. I hope so. I will go to any GP or Locum as long as they don't tell me it's all in My Head and I Imagine my pain . I believe you are on your Hols and I hope you are relaxing and having a nice time ..trishxxx

[piglette in reply to trish29]

Hi Trish, are you saying the Butrans patches are helping the PMR or have I misunderstood? If they are it may be you have something else as they are opiod based which really does not touch PMR.

[trish29 in reply to piglette]

Hello Piglette.. it's a long story but yes i do have other problems besides the PMR , including Cellulitus and now a UTI on top, and a frozen shoulder .I was given the Butran Patches in my early years with PMR by a previous Rheumatologist and they did help my pain but i always believed that i had Myofacial pain syndrome. In one of my Good Spells i came off the patches. But on my visit to Dr Hughes recently the Patches were mentioned again as he had given me a 160mg Depomedrone injection on my previous visit and could see that i wasn't coping with my pain. I'ts now taken 3 weeks to get the Patches issued by the Gp who could also see my pain , with some new Antibiotics for the UTI. I have already been on a 3 week course of antibiotics for the cellulitus which is improving .. We believe that the Cellulitus is stopping me from getting down below the 14.05mg steroid as that is when i get the constant flares and this has been going on for at least 2 years now visiting many GPs and Locums who just scratch their heads and don't know which way to go .. My pain level has been unbearable and over the years i know what pain is.. Thankfully the Patches are working and my pain level now is copable.Today has been a much better day for the first time in a long time. Because the PMR pain is mixed in i haven't taken so many painkillers today which is a relief. Thank you for your reply to me. I haven't had the strength in my upper arms and shoulders to get on my mobility scooter and get out of the house, but hopefully at the end of next week i can get back to some nice gentle Bowen Therapy. Best wishes trish 29

[PMRpro Ambassador in reply to trish29]

My Bowen therapist did house calls where required...

[trish29 in reply to PMRpro]

Hi again PMRpro .I'm sure Natasha would as well,but i like the relaxed atsmosphere of going over to her at Hampton.I love seeing and going over the River Thames..l have hurt too much to get myself dressed and get in the car ,on the up now i hope ..trish xxx

[piglette in reply to trish29]

Hi Trish

It is very difficult when you have other things apart from PMR. You really do not know what helps and what doesn't. Hope at least the anti biotics sort out the UTI.

[trish29 in reply to piglette]

Thank You Piglette ..i am just relieved to get some pain relief..enjoy the weekend .trish x

[Tj2017]

Wow Trixiechamp, I feel for you and all the confusion regarding the diagnosis. Hopefully you are on the right path now though it might be a bit bumpy. Be sure to be kind to yourself as you pull back from the steroids and advocate for yourself. Your pain is real and I've seen post of other women who are in their forties and diagnosed with PMR.

My thoughts are with you,

TJ

[PMRpro Ambassador]

The slow reductions is for PMR - not for getting off pred, there is a subtle difference. This happens quite often - GPs jump to a conclusion and use far too high doses of pred and the good rheumy has to clear it up. One lady in a similar situation has finally been diagnosed with RA.

Dr Hughes won't dismiss PMR out of hand just on age - last year there was a man in his 40s who presented with PMR and Dr Hughes worked out where it was coming from, an unusual presentation.

Like Celtic I would trust him to do the detective work! But if you are on 60mg to manage whatever it is - it is VERY unlikely to be "just" PMR.

[Trixiechamp in reply to PMRpro]

He couldn't have been nicer tbh, it's just so confusing but yes I'm going with what he says - anything to get off this 60mg, feel absolutely horrendous and I know I'm in good hands, even better that he is quite happy to see me as an NHS patient too if I prefer and not getting further with my local hospital. Thanks to all who recommended him x

[Polywotsit PMRGCAuk team member in reply to Trixiechamp]

Yes, you must trust him and get on with getting off the steroids! Don't be too nervous about it.

[trish29 in reply to Trixiechamp]

Hello Trixiechamp .. i so hope that the steroid reduction goes well for you .I have been with Dr Hughes a few years now and have Always put my faith in him .I am getting ready to go to a Double Appointment with my GP this morning with instructions from Dr Hughes. You are young and need to get to the bottom of whats causing your symptoms . Good luck .trish29

[Ladybird25 in reply to Trixiechamp]

I really understand how you feel... When I first went to my rheumy she was all for me coming off the steroids as quickly as possible as she was sceptical about me having PMR due to my age and the complexity of my presentation, until she repeated all the tests my GP had done and was eventually satisfied that it was PMR. I was also very confused during that time, and just wanted to come to terms with a diagnosis and be comfortable and able to move. I think if you have a diagnosis you feel more empowered to deal with it, so having a consultant come along and tell you that it might not be what you thought it was is initially very confusing and distressing. "Knowledge is power..."

I had actually been considering asking for a referral to Dr Hughes as I live in Surrey, but having come to terms (mostly...) with my diagnosis, I'd be slightly anxious about having to start over again... I've already had the ultrasounds, PET/CT, echocardiogram, numerous blood tests, chest x-ray, referral to Infectious Diseases Department, etc. My current rheumy in my local hospital grumbles at me as she always says her usual PMR patients are in and out in 15 minutes.... And then I come along...

Good luck and let us know how you get on.

[Celtic PMRGCAuk volunteer in reply to Ladybird25]

Hi Claire

"My current rheumy in my local hospital grumbles at me as she always says her usual PMR patients are in and out in 15 minutes.... And then I come along..."

Sounds a bit like me with my renal consultant who is desperately trying, but failing, to tackle my resistant high blood pressure - he welcomes me as his "awkward patient"!

Good for them to have a challenge, I say!

It sounds as though you have been really well investigated by your current rheumy, Claire so, if you're feeling on top of things, there probably isn't any need for referral to Dr Hughes. He will always be there should you feel differently in the future.

[Ladybird25 in reply to Celtic]

Sometimes I feel that I'm not really on top of things yet... However, I'm determined and am persevering with my Pred tapering, although have recently got a bit stuck. At my last appointment with my Rheumy, she sent me off with instructions to reduce the Pred by 1mg a month. I have a follow-up appointment with her in two weeks' time and I have a feeling she's going to be looking over her glasses at me... As you say, here comes the "awkward patient"!

They should welcome the more challenging patients and learn from them! It's good for them to be kept on their toes.

[PMRpro Ambassador in reply to Ladybird25]

They cannot dictate the pred dose you should be on - there are too many variables for that ranging from the percentage of the dose you absorb, which can be anything from 50% to 90%, to the activity of the underlying disease process. The more active the disease process the more pred you are likely to need.

The PMR is the boss - whether you or she like it or not. I'd look over MY specs and point out it is MY body and MY pain. Not hers.

[Ladybird25 in reply to PMRpro]

That's great! I feel empowered to face her and point out exactly that! She tutted at me when I hadn't reduced to 10mg last time I saw her... I hadn't come across this forum then, (and learned so much) so she'll see another side to me this time!

[SheffieldJane]

Well that's all very reassuring Trixiechamp. Good luck with everything. A trusted doctor is gold dust. 🍀

[SusyTe]

Dr Hughes is also my rheumy and I would trust him totally, Trixie. Try not to worry too much as it will make any inflammation worse. Easy for me to say, I know. Big hugs xx

[Jackoh]

Dr Hughes is also my Consultant. Don't feel he makes decisions on a whim or without good reason- and this is from someone who has worked with Consultants and I admit sometimes a bit sceptical. I would say trust him and all the very best for the next few weeks especially. Let us know how you get on. X Jackie