Long and boring post but need help!!

Hi all

So apologies if you are having a good day and don't want to be all doom and gloom but I'm getting to the end of my tether. Please forgive me for the epic post again but I need advice...

I had my follow up rheumatology appointment today after my last one was cancelled to find out the results of all the tests and scans etc I'd had and to see how I was getting on. In short all my results were pretty 'normal' (even though they forgot to do my ESR (12) before I was upped to 20mg) which is good news. However, despite my prior diagnosis of PMR with GCA overlap, the consultant who I was supposed to see (and was confident in) had overrun and so I saw someone else. I had to go over all the history from the start and he was pressing me about stress and whether I'd had any particularly stressful episodes before it all started. So I explained that my then 11 year old had been knocked down by a car and it was weeks in hospital followed by a year of rehab and running about after him whilst he healed so yes, pretty stressful. 'So are you a stressy person generally? Um no but I think that was an exception!! He then proceeded to check my pressure points, told me it wasn't fibromyalgia (yes knew that thanks), wasn't RA, wasn't Lupus and he also didn't think it was PMR.

I told him that my current dose of 20mg wasn't cutting the mustard and that I was still getting pain in my hips, shoulders, jaw and tongue and was hoping to up it to 25mg to see if that would help. As he doesn't think it's PMR even though all my symptoms fit, one because I'm 45 and it's almost unheard of AND I don't have raised inflammatory markers. I asked him if he'd ever seen people that present like this and he said no and it's only about 2 or 3 percent that do. So I asked him couldn't I be in that percentage? Maybe, but he wants me to reduce my Pred down by 2.5mg a month until I get below 10 and preferably 4mg at least and then readdress. He was emphatic about this and wanted me off the steroids as soon as possible because they are 'really not very good for me and can give horrible side effects'. (I showed him the cabbage patch kid picture of me and said I was well aware of this!)

So this is how the ensuing conversation went...I asked him what he would suggest I do in the meantime as I'm already stiff and in pain now on walking, doing menial stuff like shopping, washing up, I can't work, can barely manage to take the dog out, am constantly fatigued and still have jaw and tongue pain and even holding my phone or a cup of tea for longer than a minute makes my shoulders ache terribly. The answer...you just have to cope.

I then asked him about the fact if I'm like that now, how on earth am I going to 'cope' if you make me reduce Pred even more?? Again, you'll have to cope or come to the flare clinic but that's a 6 month wait. And then we'll redo your bloods and if we then think it's PMR we'll put you on methotrexate. And if my bloods are normal? We'll do the same!! So why can't we just do that now? Well because I don't think it's PMR!!!

So now what PMR peeps, my thinking is to ignore him, go up to 25mg, see how I get on with that and then do DSNS after a month or so. I'm just so fed up of almost getting somewhere and then it all being scrapped. Do I go back to Mr Hughes at Chertsey and see what he thinks now I'm on a lower dose, or find another consultant...or just keep doing what I'm planning to do which is just manage it all myself. I'm seriously fed up. What would you do?? I feel like everything I've researched and learned from here is completely contradicted by the 'experts' and have no confidence at all. Not a great way to spend my 19th anniversary lol poor husband spent the day with a blubbering, sweaty, puffy, and fuming wife!

Moan over, hit me with your genius.....if you are still awake!!

Tanya x x

29 Replies

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  • One of the advantages of going back to Dr Hughes is that you will see him. And he will add you to his NHS list if you wish. If you go back to the other lot you will be kept hanging about and probably having appointments postponed or see someone else and get nowhere.

    I had a similar experience - first appointment did the whole history and examination bit and the rheumy wasn't convinced it was PMR but did give me 6 weeks of pred to take me through a trip to the USA. I had a 6 hour miracle. When I went back for the follow-up it was a different doctor - and the identical procedure (what a waste of time) to the point where the doctor said "Oh-er, I don't know. I'll have to get the boss". Neither of them wanted to listen to me and it turned out the second chap was a "GP with a special interest". Thanks - could have had one of them at the practice.

    Luckily a different GP to usual was convinced it was PMR and the rest is history as they say.

    I would go back to Dr Hughes - with the lower dose which he wanted too didn't he? And work from there.

  • He didn't think it was PMR either..."too young and below the waist symptoms" and wanted me to get to 10mg from 60mg so I could have the blood tests which have now happened...And are all normal.

    I would go back to him but surely he would come up with the same conclusion? It's all so confusing but I do know that my original dose of 30mg was a 4 hour miracle 'cure' for the stiffness and pain and I only upped it because I had a bad chesty cough for 2 weeks and my PMR symptoms then worsened. Maybe I'll just go and see him anyway and see what he thinks...

  • The fact you went up to such a high dose did make it very difficult for him - that's why the recommended starting doses are up to 25mg as PMR is one of the few things that responds well to that sort of dose of pred. A lot of things will improve in response to 30mg and even more so to 60mg. That is why he asked you to reduce the dose to see what appears. In saying he isn't convinced it is PMR doesn't mean it isn't, he wants to see you without 60mg pred - but it is far better to find the right treatment for whatever it is than continuing with pred if there is something better.

    Unfortunately rheumies are faced with this all the time - and it is very upsetting for the patients who have been told they have a label and it can be treated suddenly to be confused. The fact there is no definitive test makes it difficult for everyone concerned - but that applies for a lot of autoimmune disease.

  • Hi Tanya

    Just a (not so.. as usual) quick reply from me, for what it's worth (with the caveat that I'm not a medical expert or a counsellor)..

    First, don't worry about having a 'good old moan' here! Being able to let-off steam and asking for support / advice is what this Community is about. Your dilemma around trusting GPs' and Specialists' advice seems quite familiar from what I know about these things. There are so many contradictions...

    Just to say: I'm certain that the 'Aunties' (i.e. the respected and trusted experts on this forum), together with a few others of 'Us PMR Lot' here will be along very soon to give their opinions and help. Hopefully this will give you some confidence in how to make sense of things: and, more important for you, how to challenge, and if necessary negotiate a suitable path forwards ref. treatment options with your GP or Specialist in YOUR context (and not some GPs' / Rheumies' seemingly standard interpretation of how to manage PMR and / or GCA).

    As for your Rheumy's suggestion ref. 'the stress factor / preds not good / side effects' etc): well in principle, I think he is right to some extent. At the same time, he just doesn't seem to be listening to you about your recent, very exceptional stresses, the impact of them on your health generally, and how to modify the 'standard' treatment process in YOUR context right now.

    The most alarming bit of your story, if I read it correctly, is your Rheumy's very subjective implication that you might be a (q.) 'stressy' person (!): and so, by inference, You are responsible for your predicament. Your very articulate post doesn't give me this impression. You seem to be very rational about and aware of your context in general, and have a very healthy SOH around the ironies of what you are dealing with in terms advice received from a supposed 'expert'.

    Personally, I would encourage you (if you can summon the emotional resilience!) to firmly challenge your Rheumy's advice - and his attitude towards you / your context - if you can? Trusted Facts and data could be helpful to you in the process - and, of course, an Assertive approach (by 'Assertive', I mean presenting a Clear, Reasoned and Evidenced proposition for the outcome you want / need from him...).

    Fingers crossed for you - hope this helps in some small way, and try to stay positive in the meantime ;-)

    MB :-)

  • Thanks Mark, I'm trying to be upbeat and was determined that today wouldn't railroad me as I had already kind of accepted the last diagnosis of PMR with GCA overlap and was expecting for them to agree for me to up my dose to 25mg.

    There were a few things I challenged him on, one on the age thing, the negative bloods not being the be all and end all and also the methotrexate which he said they used all the time to treat PMR. (I thought as I understood it that this only has an impact when used in early diagnosis and is mainly for RA?). He also said that most people have PMR for 18 months...sound familiar!? lol you tell it that then!

    I did get a bit short when he said I should come back when I really couldn't cope at all and I said so when I follow your reduction plan of 2.5mg a month until I get to 4mg and I'm in a wheelchair or can't get out of bed or have adrenal failure then you'll say you were wrong! It amazes me that two consultants can have such differing options when there is only a corridor between them...husband did have to laugh when I announced "I think we're done here"...and also when he told me to go away and follow the advice to reduce the Pred down to at least 3-4mg...my answer was "well that's not going to happen"

    You can imagine how well him talking to my husband instead of me went down as well...

    ROID RAGE INCOMING lol....

  • Ohh, shocking at all levels!

    Back tomorrow, will follow your thread (and other responses to it) with interest ;-)

  • "methotrexate which he said they used all the time to treat PMR"

    Really? That's a downright lie - I won't even call it an exaggeration. Patients on mtx are the minority - and many stop it because of side effects or lack of effect. Even the latest Recommendations from the top experts only CONDITIONALLY recommend the use of methotrexate: Recommendation 7 here

    rheumatology.org/Portals/0/...

    And as you well know - 18 months is a figment of his imagination. My line on THAT is that patients who are told after 18-24 months that they are cured and signed off disappear into the ether because they aren't being listened to. If you aren't listened to at the start of your journey - you aren't going to be heard any other time are you? So there isn't a lot of point going back and speaking...

    I think he has labelled you with somaticism - which is a very common thing for younger patients with normal bloods. Been there, got the t-shirt.

  • lol I did have to google that word, but yes I felt he was implying it was all in my head...I know full well that the progression in symptoms was real, especially when I didn't even realise I was dealing with half of them until the Pred kicked in after 4 hours...

    TBH I had lost faith in him from the moment he said about the 18 month prognosis and most of his patients are 'cured' by then and then add the methotrexate being the absolute standard for anyone who doesn't respond to steroids...well, I even said I have to disagree with you, I know of hundreds of people online who would as well, which is when he started speaking to my husband rather than me!! I was very calm throughout but it to be essentially told it's in your head (having been through similar with an endometriosis diagnosis) you start to doubt yourself! (That time I was asked if I was hypochondriac by a Gyne Physio until I had a laparoscopy and they found my left ovary and bowel was stuck to the back wall of my uterus!)

    I understand totally why Mr Hughes wanted me to reduce down to 10mg as the GP never ever tested ESR levels it now turns out..and unfortunately that was the one test they missed out on my bloods ordered at my last appointment after that painful fast steroid reduction. Not sure if 15mg makes any difference as my level was only 12...I think we will end up seeing him again or even a trip to Southend to see Professor Gupta...my symptoms fit totally with PMR with a large vessel GCA overlap which he talks about in a video on YouTube...

    Don't get me wrong, as I said to the consultant yesterday, I don't want PMR anymore than I want to be on steroids but my worry is the damage caused in the meantime and the continued setback by stopped the Pred if in fact I do have it. Not to mention life in general which is on hold at the moment..I feel like I am missing my last few years with my sons at 14 and 16 to do family stuff like holidays and trips out before they go off into the big wide world and it's heartbreaking.

    Thank you for your wise words, I will have a read of that link x x

  • " I am missing my last few years with my sons at 14 and 16 to do family stuff like holidays and trips out before they go off into the big wide world and it's heartbreaking"

    Quite.

  • Yes, dear Trixie , it IS a heartbreak for you !!

    I really Get It .....keep on fighting to hold onto those precious moments with your boys ...all so worth it in the end.

    Suzanne

  • No one wants to be on pred. But it is the only thing that controls PMR/GCA inflammation. I know pred isn't good for me, but neither is the inflammation. It's not just the pain. It's the damage the inflammation is doing as it runs through my blood vessels. "Coping" with that is not an option, because you can't cure inflammation with "The Think Method".

    Keep shopping for someone who will listen. There's a plethora of information out there about people who have PMR/GCA under 50.

    Oh, and what is it he thinks you do have if it isn't fibromyalgia, RA, Lupus, or PMR?

  • Thank you, I know that's what we kept asking him! Munchausen? lol

  • Here's a diagnosis: His attitude is misogynistic.

    Dump him. You'll never be able to trust someone with that attitude.

    In the meantime, treat any trouble with your sight as an emergency and seek medical treatment without delay. There is no such thing as normal vision disruption. Don't wait and "see". Go for help immediately.

    Also ask a trusted consultant (once you find one) if you should immediately pop some pred when you have a vision problem. It just might save your sight, but proceed with caution. Everyone is different, and everyone's on a different combo of meds, so that might be contra-indicated. But it's best to know what steps you can take to guard yourself while getting to/waiting for treatment.

  • Everybody has said what I wanted to say. I feel angry on your behalf. I would be tempted to up my dose and do the self care that you want to do. I admire you for standing your ground. The aetiology for PMR is just the kind of extraordinary stress that you have had and keeping it in for the sake of others. How dare he imply that you are a stressy person.

    Nobody wants a PMR diagnosis, we just want to feel better. You are going to need another doctor, if only for your Pred prescription. Round 1, keep fighting and off load here all you like, we're on your side.

  • Thank you I am so grateful for this forum and all the lovely people on it x x I do feel like at the moment I'm constantly being negative, whenever someone asks me if I've tried diet, acupuncture, fish oils...the list goes on and it's so hard to keep smiling and say yes unfortunately! The last one was 'have you thought about just coming off steroids totally and taking glucosamine?' Err not really lol if only!!x

  • Hi Trixiechamp.

    I found your reference to 'symptoms bellow the waist' not recognised as PMR interesting as I had this problem for four months sending GP on wild goose chase. It was only when symptoms spread to above the waist that both the Internet and GP came up with PMR! So I can really empathise.

    Clearly you don't want to, and there seems no point, seeing the 'substitute' again. Having learned first hand of the mixed messages between consultants, registrars and minions, (when my mum was ill) I recognise how frustrated you must feel. I found myself shouting at a registrar who literally accused my mum of wasting resources because she couldn't make up her mind whether to have an operation, aged 90, to take out gallstones they were not sure she had! She had said she would proceed and had a pre op assessment a year beforehand but each different consultant she saw, yes within the department, gave a different answer - yes gallstones, no gallstones, yes op, no op yet they were all working from the same information in front of them. Until you experience it first hand it really does beggar belief! I have never felt such anger and frustration and I did lose it to the extent this young whipper snapper called her boss to deal with me, which was great as I could make a formal complaint about this young woman's accusation straight away. (I am still furious about it as I am typing this!)

    In my view you are being treated in the same fashion as my mother. Yes you have PMR, no you don't, if it doesn't work we'll give you other meds anyway!!!!!!!!! Absolutely farcical! ( I am feeling furious just thinking about their treatment of you).

    I would strongly advise writing to the consultant, whom you had faith in and saw originally, requesting that you see him at your next visit. Clearly and rationally state your reasons for this request, backing it up with evidence and your rationale, as you have above in your post. You can also ring his secretary, sooner rather than later, to make the request verbally, before she sends out appointments, stating you will follow up the request in writing. I would suggest ending the letter along the lines that the positive alternative approach your preferred consultant used had appeared to be working - and that treatment will be more successful where a relationship of trust and mutual respect is built between consultant and patient, hence the reason for your request.

    You are clearly articulate when writing, (that's not to say you are not articulate verbally, but by writing you can focus on rationale, facts and outcomes based on real experiences, without the emotions of the moment getting in the way. So much easier to think and respond rationally and articulately when you don't have someone in your face challenging every sentence you write / say. Also if you need to make a formal complaint later the letter can be quoted / used as evidence. However I suspect that given your request is formalised in writing, they would run with it, as to ignore it they run the risk of thing escalating. In any case it would be a very resonable request.

    Can't help with suggestions on the medical side re tapering etc as I don't have any experience to draw on, but already know of S4ndy, a member of this community who was diagnosed aged 46. You may wish to try to contact her to see if she had any disbelief on the part of the medics due to her age!

    Good Luck.

  • To be fair - Dr Hughes is open-minded about age and atypical presentations.

  • This is what I thought which is why I was surprised at how emphatic he was that people of my age just don't get it. The other thing I found myself questioning was that yesterday I was told that a couple of episodes of short term sight loss in one eye did not constitute a GCA diagnosis and a 60mg dose as my sight would not have come back at all if that were the case?? Is that true?

  • No, 2 episodes of short term sight loss alone wouldn't constitute a GCA dx. But in combination with PMR symptoms and other things it should signal a degree of suspicion. It's too late when the patient is already blind - ask DorsetLady about that.

    As for "your sight would not have come back at all" - that is utter tosh. It is called amaurosis fugax: "Amaurosis fugax is a temporary loss of vision in one or both eyes due to a lack of blood flow to the retina. The retina is the light-sensitive layer of tissue at the back of the eyeball.

    "

    and eyewiki's excellent GCA article says

    "The most common ocular manifestation in GCA is acute unilateral vision loss, which has been reported in 7-60% of patients with GCA.32 In approximately 30% of patients with permanent vision loss, there are antecedent episodes of amaurosis fugax.[27] These episodes of transient visual loss typically begin about 8.5 days prior to permanent loss, and are secondary to transient retinal, choroidal, and/or optic nerve ischemia.[32] Typically, the vision loss is secondary to optic nerve ischemia (AAION); it is less commonly due to a central retinal artery occlusion. Other than vision loss, patients may complain of diplopia, eye pain, or symptoms from cranial neuropathies (i.e. ptosis, anisocoria, diplopia)."

    eyewiki.aao.org/Giant_Cell_...

    As they say, the presentation varies a lot (look under Diagnosis) so anyone who makes such definitive negative statements is being very silly.

  • Yup I've had double vision in one eye frequently and had severe pain when I lost the vision too...

  • Sounds unpleasantly like GCA to me ...

  • Thank you so much for your advice, yes I'll do that! I feel bad for the people on the flare clinic if it's a 6 month wait...

  • Hi Trixiechamp,

    I do understand, I had a similar problem with a different illness some years ago and when I finally saw a doc who actually listened his comment was "sometimes as doctors we get too far up our own a...s". Nuff said?

    I have PMR with GCA overlap and am having a flare and have had to double my pred. In our imagination.........I wish.

    Hope you get sorted very soon, all good wishes.

  • Tanya,

    How outrageous and wrong. To pull back your diagnosis and meds without even offering a path to look for a diagnosis to help you is negligent in my mind. I would definitely go back, at least you have a history, to review with Dr Hughes. You need a physician that is willing to heal you, stress related or not. Stress shouldn't matter.

    Rant and rave all you want. That was just wrong.

    TJ

  • Hi Tanya

    Rant counter shout whinge. Doesn't it feel better when you write it down? It's not too long at all. I am a believer in "physician heal thyself". I experiment with my meds if I don't feel any different after a consultation that's inconclusive. Wouldn't recommend that though. I can't see how else to proceed other than contacting the Dr every week to say you've tried everything you can nothing's working what's next I can't cope it's affecting the whole family? I know Doctors and Consultants are only human and can know everything but they could be more empathetic, open to suggestion or try something new or different. Keep going don't give up pester them till they give a little. Hang in there.

    Von

  • Just got my next appointment through...7th February 2018! Good job I'm managing myself lol x

  • Not sure how'coping' with the pain your'e in is good for you or your body in the long term. Yes, steroids are not body friendly but neither is pain. I use prednisolone to cope with pain and sometimes it's not enough. So I up the dose, just recently from 7.5 to 10mgs. I stayed on 10 long enough to get back my equilibrium and then gradually brought it back down, currently 7mgs. I said in my last post that I have a wedding in a few weeks so I will probably up the dose again as it might be a stressful situation. I really don't understand how a doctor can leave you with so much pain and discomfort when we have the drugs to alleviate it. Good luck Trixie..

  • So another dilemma as the very helpful locum Rhumey I was supposed to see is no longer working at the hospital...spoke to the department and said I wasn't happy with the last appointment but they won't do anything until the letter has been sent out and evaluated by the GP. Having still got symptoms of PMR/GCA overlap should I register with Mr Hughes even though his prior thought were not PMR/GCA? Sorry for the repeated questions but as a lot of you will know it's very frustrating being pulled from pillar to post and still being in the same situation after 6 months of messing around with meds. The stress of this alone (on body and mind) I'm certain is contributing to my worsening symptoms....last Rhumey wanted me to have all the bloods done again which I feel is completely pointless as they were 'normal' a few weeks ago even before I was upped on Pred dose! So fed up with everything, just want to know how to feel better 😞

  • I think Rod Hughes will do his very best to work out what it is - whether or not he thinks it is PMR at present is probably immaterial and if he has doubts he will have good reasons for them which I'm sure he would explain if you asked him.

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