Thank Goodness for this forum, Detectives needed please.

[Merly]

I would value your opinions please, my heads mashed with thinking. In 2012, I woke up with appalling flashing, electrical type pains and severe patches of static pain running from hips to ankles that disappeared and came up else where. It didnt go and pain killers didnt touch it. Spent next 3yrs backwards & forwards from Drs. and most of it bedbound, it hurt so much. Initial diagnosis was infection, poss. Glandular fever, that was on its way out. Early xrays showed slight arthritus in both hips and was told to take painkillers. 2 yrs later Dr. eventually agreed MRI which showed a benign tumour on filum in spine. 2015 had laminectomy on L1 and L2. Pain gradually lessoned slightly over next 6 months although hip joints so stiff and painfull, was walking by swinging hips and had very weak leg muscles. At final appt. spine surgeon diagnosed severe arthritus in both hips which led to both hips being replaced in 2016. By summer 2017 after doing lots of exercises/stretching pain free and walking normally, I had my life back! Sept. 2017, on holiday, got what i thought was sinusitus. Spray from chemist didnt work and it got worse. Horrible pain in nose and sinuses, which spread from temp!es down past ear to throat. Then permanant pain in top & bottom jaw and teeth, no headache. Dr. prescribed in total 3 weeks of increasing doses of Doxycylene. Then ended up in A&E with grey clouds obscuring vision in right eye and a small, pulsating lump at top of forehead in hairline. Dr. suspected GCA and gave 60mg Pred. Rheumy consultant arrived and diagreed, thought infection as I had such atypical symptoms. Stopped Pred and gave IV antibiotics. 2 days later she said she wasnt sure and reinstated Pred. Subsequent CT to head, MRI and PET showed nothing but biopsy to small pulsating lump confirmed CGA. Im now doing well (fingers crossed) on the Pred. treadmill, thanks to all who contribute here.

But is it poss. my earlier problems/need for hip replacements were PMR and linked to the GCA? The consultant dismissed any poss link.

Thank you so much for bearing with me, I know it wont make any diff. to the outcome but i hate not knowing whats going on with my own body

Ang

[SnazzyD]

Hello, what a lot you’ve been through. PMR/GCA is an autoimmune disorder; your body is attacking itself, in this case, blood vessels. The two conditions are the same but PMR affects muscles and GCA affects the medium arteries mostly in the upper chest upwards. You can have one and never get the other or have one and go on to get the other as well. What makes this happen is a mystery but it does seem that trauma, unrelenting stress, upset, infection can cause this confusion between self and enemy. I’m assuming you had osteoarthritis. That can be shown on X-ray but not the PMR. So if they could see the arthritis, the ops would not have been done for no good reason. So, my thought is yes these things probably did trigger it, but not because of anything that anybody did or didn’t do,though I’m not sure what it was about your presentation in A&E that the Rheumy thought was atypical. It sounds like you were unlucky because of all the other conditions going on throwing them off the scent. Perhaps it is best to look forward and reconnect with your body and see what it is saying and then nurture it back to health.

[Merly in reply to SnazzyD]

Thank you, your reply makes perfect sense. It didnt help that apparently I had an extreme reaction to the 60mg doses of Prednisonol and got very aggitated, mentally and physical!y and they kept me in hospital for 9 days. I got very aggitated and confused when the consultant kept changing her diagnosis and treatment and was probably a very dificult patient.

Some of the atypical symptoms I remember her saying were:

No headache throughout

She had never seen a pulsating lump on the hairline, only at the temples,

Strong pulse in throat when usually very weak

[PMRpro Ambassador in reply to Merly]

There doesn't have to be headache. The temporal artery varies in its path and so does the bit that is affected. If the carotid pulse was weak you'd really be in trouble. It is difficulty feeling the TEMPORAL pulse that is characteristic.

Where are you? Maybe there s better option we can suggest. I would get agitated if a consultant kept changing their mind too - never mind when under the influence of 60mg pred!! Or maybe Keyes can suggest someone.

[Merly in reply to PMRpro]

Yep, you've summed it up, i just have no confidence in the Rheumy Consultant. KEYES Helpline sounds good but ive searched Google and forum and cant find it.

I'm in Surrey. Reading on here, i think thr go to Dr. was at Chertsey but has now retired?

Thanks once more for your help

[PMRpro Ambassador in reply to Merly]

I don't think Rod Hughes has retired - he has school-age kids!

Here is his private page

bmihealthcare.co.uk/consult...

he also works NHS clinics at St Peters. If you google "rod hughes rheumatologist" you should get some links to YouTube stuff by him.

healthunlocked.com/vasculit...

Keyes figures in the "Who we are" and the phone line is under "Contact us" at the top right of the page.

[Merly in reply to PMRpro]

Just what I need, I'll follow these links up _ so much still to learn

[ValFF53 in reply to PMRpro]

Hello Merly

I have been very disappointed with my Rheumatologist and requested a second opinion with Dr Hughes in Chertsey. My GP said the referral might be rejected as it was for a ‘second opinion’. (See my recent posts).

I was absolutely delighted to find out that I have an appointment to see him in early January (NHS).

There is a small video of him talking online. He seems lovely and treats symptoms and not blood results and also treats patients holistically which is so important in PMR/GCA as they are often affected by stress etc.

I hope you have similar success in getting to see him.

Kind regards

Valerie

[Merly in reply to ValFF53]

Thank you Valerie, that confirms all that I've been reading. I'm phoning tomorrow for a private consultation. My husband says I pay horrendous vets bills for our dogs, this time it's my turn!

[ValFF53 in reply to Merly]

Yes Merly vets bills can be expensive!!! Are you are worth it!

We have already paid for a private consultation and I was given the incorrect diagnosis so decided to try to see Dr Hughes on the NHS first and was so pleased to get an appointment.

[Merly in reply to ValFF53]

Yep, I'm worth it 😁 but my other half even more so, he's put up with me throughout all this. I owe it to him to get it sorted.

[PMRpro Ambassador]

I'm not an expert - but I seriously doubt that PMR would have led to needing hip replacements, it doesn't cause that sort of joint damage. Osteoarthritis and rheumatoid arthritis do but I'm sure they would have identified which it was before the ops. On the other hand - the stress of the previous medical problems could have led to PMR/GCA.

Is this still the same consultant who dismissed GCA because you were "atypical"? Has she considered any other forms of vasculitis - because the histology is not limited to GCA but can also occur in Wegeners for example - which affects sinuses as well as other areas and can be very "atypical". It is just a thought - not a suggestion.

There is an excellent VasculitisUK forum on here with a helpline.

healthunlocked.com/vasculit...

[Merly in reply to PMRpro]

Thank you, i didnt realise that PMR doesnt usually cause that sort of hip damage, thats useful to know. And it makes sense that the stress could have led to this 2nd bout of ilness.

It was the Rheumy consultant (not the spinal surgeon) who dismissed the GCA diagnosis by the Registrar and then 2 days later reinstated it, But following your link to Wegeners, a lot of that fits as well.

I was blissfully unaware of any of these conditions, and i am just so thankful to the brilliant people that contribute to this forum. Its been my bible since i got home from hospital and i now feel far more in control of the situation. Thank you

[PMRpro Ambassador in reply to Merly]

Do contact Keyes on the helpline - they know more about vasculitides than most rheumies and who to ask to be referred to to get sensible advice.

[piglette in reply to PMRpro]

When I saw an orthopaedic surgeon he told me that the steroids had eaten away at the cartilage in my hip and I would need a new hip because of it.

[PMRpro Ambassador in reply to piglette]

Pred maybe - PMR not I think. And the impression I gained from Merly's post was that pred didn't figure until very late in the entire story.

journalofprolotherapy.com/t...

indicates that steroid shots into the joint are a significant problem - not just the steroid itself is a problem but a joint that is painful is a warning - and the shot reduces that warning.

I can't find much about oral steroids and the amount of steroid that gets into the synovial fluid from oral dosing is quite low - which is why any joint or bursae problems take much longer to improve in PMR. If you can find anything I'd love to read it.

[piglette in reply to PMRpro]

I will look around for info, it is a real pain if the pred does cause hip problems.

[HeronNS in reply to piglette]

Is that the same as osteonecrosis? It's a known, although rare, side effect of prednisone.

[piglette in reply to HeronNS]

Hi Heron

That is a thought I wonder if there is a link.

[HeronNS in reply to piglette]

Really early on in my own journey there was a woman posting on the Patient forum who had avascular necrosis apparently caused quite quickly by her PMR-level prednisone. She was going to have hip replacement operations. I'm not sure I've heard of anyone else saying they had this happen to them.

[piglette in reply to HeronNS]

I suppose people may not have linked the two. I suppose I did not think there was a link in my case until the orthopaedic surgeon mentioned it.

[SheffieldJane]

Hi Ang,

That is quite a journey you've gone through. I feel so sorry for you. It is awful being in so much pain with frightening symptoms and not really having faith in your doctors.

It sounds as if you have come into a fairly safe harbour with your GCA diagnosis. I am sure that your hip operations were done on the basis of x Ray evidence of arthritic damage. It will be related to a serious auto- immune disease, in that everything you have been through has led up to this point. At least this, hopefully your last health scare, will proceed normally towards complete recovery. In the meantime stay with us and bring your concerns as they arise. There are a lot of people on here with vast personal experience of all aspects of GCA and it's treatment.

[Merly]

Thank you, and i'm not going anywhere <grin> its very unfotunate that the Rheumy consultant and i got off to such a bad start. This forum has provided so much reassurance, i read it avidly

[Amkoffee]

Oh my gosh you really have gone through the wringer haven't you. I think the first doctor was remiss in not doing an MRI before he started you on pain medicine. But I'm glad it was finally done and the problem treated. As far as the hips are concerned if they found the damage to the hips on an MRI before they replace them then I'm sure that was the problem rather than it being PMR or GCA.

[Merly in reply to Amkoffee]

It must be fate, phoned Mr. Hughes office, they'd just had a cancellation, I've got an appointment on Mon am!!! Thank you so much again everybody, without this forum I'd still have been wandering round totally clueless.

[Merly in reply to Amkoffee]

Sure you're right Amkoffee, a lot of it's my Pred. Head, won't stop shooting ideas/what ifs at me

[ValFF53]

Hello Merry

So pleased you have got an appointment this morn8ng.

Please let us know how you get on.

Valerie

[ValFF53 in reply to ValFF53]

Sorry this predictive text .... Hello Merly .....

My last post said ‘Are you worth it’ and should have said ‘You are worth it’ but that could have been my error not the computer!!! Hope no offence taken!!

Good luck for today

Valerie

[Merly in reply to ValFF53]

No, of course no offence taken ive been sooo manic on the high doses of pred. I really dont know how the other half copes, i cant cope with myself half the time, i have to make myself go and lie down, keep still and keep my mouth firmly shut. (The consultant did say i'd had an extreme reaction) So i really do think he deseves me having a private consultation more than i myself do

[Merly]

Rod Hughes was everything people have said he was. He made me feel confident that i could manage my treatment myself with him there to handhold and advise when necessary. He said that he would be willing to take me on as a NHS patient following referral from GP but i'm wondering if it could be arranged that GP takes care of routine stuff and i see him privately on a consult basis?

As has been said previously by others, he treats holistically, believes that although they can be useful, blood tests are not the be all and end a!l, that only you know your body and it's imperative you listen to it, take your time and keep stress as low as possible - put yourself first.

He listens to you, no matter how silly you feel some of your concerns may be and shows a real interest.

I did take a brief history of events and questions as an aide memoire for me with copy for copy for him, along with blood test results, and he found these useful.

He also felt that the pain in my legs/hips that started in 2012 was PMR related. Just knowing this makes everything seem to make more sense and knowing its related i am not concerned any longer that another mystery illness may come out the woodwork and knock me for 6 at some point in the future.

#VallFF53 Val, Ive messaged you some info for when you visit the Runnymeade

[PMRpro Ambassador in reply to Merly]

I honestly don't think he treats his NHS patients any differently from the private ones. I'm really hoping he gets to come to the OMERACT meeting in Australia in May - I was gutted when he had to miss the last one!

[SusyTe]

I am so glad you got to see Dr Hughes, Merly. I am under his care (I live in Weybridge) and he is wonderful. X

[Merly in reply to SusyTe]

Yep, total opposite of hopefully, soon to be ex-consultant