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
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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.
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?
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.
😂😂 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.
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.
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.
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.
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.
"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.
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....
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.
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.
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.
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!
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Update
Prednisolone and Methotrexate update
Update on pain
Looking for a private Rheumatologist 
Update re Sensible GP, Rheumatologist not so much…
