Update Depression...,: Saw my Rheumatologist today... - PMRGCAuk

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Update Depression...,

Slosh profile image
39 Replies

Saw my Rheumatologist today - seriously don't know why I pay him over £200 for less than 15 minutes!

He said I must speak to my GP about the depression.

Said the Dead Dlow Nearly Stop method is all well and good but he would like me to go down 1mg per month and I must just push through - Mmmm clearly didn't really read it through.

Asked him if I could try LDN - NO he's says 'it's a drug used to treat drug addicts' - I said yes but that's high dose naltrexone. Well he said its not part of their guidelines and he does not know any Rheumatologists that treat PMR with Naltrexone.

Weird - I thought I was paying him.

Did not seem interested that some of my blood tests were odd or that I only sleep about 5 (interrupted) hours a night or that I've been having pain in my kidney /adrenal area.

Does anyone know a good Rheumatologist in the London area?

I feel like flying home to see a doctor - who will actually take / give me the time I'm paying for. Those 15 minutes cost just less than half a flight anyway!

Moan over - sorry.

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Slosh profile image
Slosh
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39 Replies
Chrob profile image
Chrob

Sorry can't help , but I do feel cross for you .

PMRpro profile image
PMRproAmbassador

Is Chertsey too far? Dr Rod Hughes comes very highly recommended by many on this forum. He does private and NHS - and will transfer you to the NHS list if it is appropriate.

Slosh profile image
Slosh in reply to PMRpro

No not too far PMRpro. I travelled further than that today. I am in Twickenham.

I told him that I've had headacges everyday in the last month - which is completely new for me. I've never had headaches in my life - except for from severe illness like encephalitis, malaria or very bad influenza. He didn't even comment.

I think he thought everything including the pain in my kidney / adrenal area was due to 'depression'.

Just so angry at the moment.

I walked out without asking for a prescription for more Pred.

Would I just google him and try and get an appointment?

Marilyn1959 profile image
Marilyn1959 in reply to Slosh

Hi Slosh.

Member susyte gave me these contact details for Dr Rod Hughes.

Jody Evans private secretary to Dr Rod Hughes MD FRCP.

Tel: 01932 877831

Email Jody.Evans@bmihealthcare.co.uk

Website drrhughesrheumatologyltd.com

The Runnymede Hospital

Guildford Road

Chertsey

Surrey

KT16 0RQ

Perhaps contact Jodie Evans to pursue enquiry in the first instance? Hope this helps.

Slosh profile image
Slosh in reply to Marilyn1959

Oh wow Marilyn1959 thank you so much - will phone on Monday.

sazzyb profile image
sazzyb in reply to Marilyn1959

Hi Marilyn, there's an 'a' missing from the web address:

drrahughesrheumatologyltd.com/

PMRpro profile image
PMRproAmbassador in reply to Slosh

You have the details I see - do have a look at his site. Don't know if he's around all through August - he's got a young family. But no harm in contacting Jody asap.

Slosh profile image
Slosh in reply to PMRpro

Thanks PMRPro - I will do today.

SheffieldJane profile image
SheffieldJane

Hi Slosh! I hope your depression is lifting, you sound really feisty!

Can't offer practical advice but you seem to have it covered. Just cheering you on!

Slosh profile image
Slosh in reply to SheffieldJane

😂😂 Thanks Sheffieldjane - yes it comes and goes in waves. I told my daughter yesterday that immigrating, PMR and Pred have changed my personality! I have had thoughts and said words 😬 that I would not have drramt of before.

SheffieldJane profile image
SheffieldJane in reply to Slosh

Yeh! Me too perhaps we were just too nice before slosh. I used to dread those sinking feelings followed by unkind thoughts directed at myself. Anger feels better, however it is not very attractive I suppose.

Slosh profile image
Slosh in reply to SheffieldJane

No - not very attractive - especially to myself. 😬

SheffieldJane profile image
SheffieldJane in reply to Slosh

Invigorating at the time though, everybody duck mum's lost it!

Slosh profile image
Slosh in reply to SheffieldJane

Heehee yes!

PMRpro profile image
PMRproAmbassador in reply to Slosh

I can tell if my PMR is flaring - my language deteriorates something rotten!

Slosh profile image
Slosh in reply to PMRpro

😂😂😂 at first I thought because of inflammation in brain 😳 Then I got it 😜

PMRpro profile image
PMRproAmbassador in reply to Slosh

Lots of people have said the same - broadens the vocabulary ;-)

SheffieldJane profile image
SheffieldJane

Puzzled as to why you think Naltrexone might help. Pred is not an opiate, we are not addicted because it makes us feel good, well at first it does, then it just deals with the inflammation therefore pain relief and mobility improves.

Slosh profile image
Slosh in reply to SheffieldJane

I just read that it had helped some with PMR recover quicker - and used to treat other autoimmune diseases - of which I have two. The Low Dose Naltrexone is not used to treat opiate addiction.

SheffieldJane profile image
SheffieldJane in reply to Slosh

I wonder if it is a bit like the failed anti depressant Amitriptylin that helps chronic pain and insomnia?

I've got Graves Disease and PMR.

Slosh profile image
Slosh in reply to SheffieldJane

Oh right - Graves is tricky!!

High doses are used for opiated addiction - low doses to boost the immune system.

bunnymom profile image
bunnymom in reply to Slosh

I asked my Dr about the same medicine. He was horrified.

Slosh profile image
Slosh in reply to bunnymom

Because he is thinking High Dose Naltrexone

Hindags profile image
Hindags

Slosh, I too have been interested in LDN for when I get a little lower on Pred. I have actually signed onto the website. The only thing that gives me pause is that LDN seems to be good for everything. Maybe a little too good? Also many more anecdotal studies or clinical case observations than double blind studies. Still I wouldn't rule it out if I were down and in pain.

And I would be furious at the dismissive manner of that Rheumy.

PMRpro profile image
PMRproAmbassador in reply to Hindags

"The only thing that gives me pause is that LDN seems to be good for everything. Maybe a little too good?"

I've discussed it with Sarah Mackie - and that's our suspicion. Mind you - I would certainly agree to try it given the option! I know of someone in Scandinavia whose doctor gave it to her but I don't know if it helped.

Slosh profile image
Slosh in reply to PMRpro

There seems to be more anecdotal evidence for things like ME and Hashimotos thyroiditis.

Why would you not have the option?

PMRpro profile image
PMRproAmbassador in reply to Slosh

No-one is going to prescribe it for me. I seriously doubt I could find it here.

Slosh profile image
Slosh in reply to Hindags

Yes - I know it doesn't work for everyone - but may be worth a try.

SnazzyD profile image
SnazzyD

I hope you're not still frothing at the mouth, but I'm sure I would be! Equivalent salary of £800 per hour and not even a rationale! For that I'd expect a bespoke service, some pretence at interest and a menu for lunch.

Re the Naltrexone - I found this below about it being good for boosting the immune system. BUT it says only mini studies done (Chrones, MS, Lupus, Arthritis) and no large studies particularly on autoimmune conditions. It is not licensed for these so far. The site cites various autoimmune diseases that they say have benefitted but PMR/GCA are not there. It also says that Cancer have been helped by addressing low endorphin levels. Hmm. Not sure about that. NICE has some papers about use in MS and inflammatory bowel disease. I haven't done much research on this, but I'm not sure I'd be taking a low dose opiate, which could cause dependence because that is its nature, on so little direct evidence unless every avenue was exhausted. I don't know what others here think....

prescribe4me.co.uk/lowdosen...

patient.info/medicine/naltr...

Your kidney pain - Have you had a check to make sure it isn't a grumbling kidney infection?

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

I've discussed it with Sarah Mackie - and it's our suspicion it's another to good to be true thing. Mind you - I would certainly agree to try it given the option! I know of someone in Scandinavia whose doctor gave it to her but I don't know if it helped.

Slosh profile image
Slosh in reply to PMRpro

Why would you not have the option RPro?

Slosh profile image
Slosh in reply to SnazzyD

Thanks SnazzyD - Zi will look at those.

Jackoh profile image
Jackoh

Know nothing about LDN but can understand your anger and frustration over the way you were treated- especially when you're paying for that treatment, of lack of it, in your case. Agree now is the time to seek help elsewhere where at least you feel you are being listened to. Do explore Dr Hughes, I've found him very helpful.

Slosh profile image
Slosh in reply to Jackoh

Thank you Jackoh - that's encouraging.

Slosh profile image
Slosh

As an update. I have an appointment to see Dr. Rod Hughes. Thank you PMRpro for that suggestion and Marylin1959 for the contact details.

I checked with my medical insurance whether by any chance he was part of their list of doctors I could see - sadly not.

They suggested a Dr. Dev Pyne - at the London Independant. Does anyone know anything about this Rheumatologist.

Unless there are great recommendations then I would rather just see Dr. Hughes and pay myself. I can't keep seeing different Rheumies.

I know everyone is busy but would appreciate any input.

Thank you so much in advance

PMRpro profile image
PMRproAmbassador in reply to Slosh

That's a bit mean not to have him on their books!!! The advantage of Rod Hughes is I believe he will usually transfer you to his NHS list and we know he has an interest in PMR. Dev Pyne seems to be "in" to joints but other than his webpage I know nothing of him.

Slosh profile image
Slosh in reply to PMRpro

Thank you. I'll will then rather see Dr. RodHughes and hopefully he will transfer me to his NHS list.

Ridiculously feel so overwhelmed. This disease + Pred has turned me into a whimpering idiot.

PMRpro profile image
PMRproAmbassador in reply to Slosh

I think that happens to a lot of patients - firstly because of the lack of diagnosis and then the lack of empathy with which we meet. Being in constant pain is not easy!

Slosh profile image
Slosh

Yes I suppose. And not sleeping well doesn't help.

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