London NHS rheumatologist - recommendations?
Posted , 4 users are following.
Can anyone recommend a London-based NHS rheumatologist who specialises (or maybe has interest) in PMR? I'm looking to get a second opinion as I don't feel I am being managed well by current rheumatologist.
I'm in constant pain and it's really wearing me down. GP prescribed 2 x 30mg cocodamol, 4 times a day, which is giving no relief. I saw him as I'd developed new pains that radiate from buttocks down back of thigh. From what I've found on the internet, it could be tendonitis. I've got a private physio appointment on Tuesday, as first NHS one not available until January. Unfortunately I don't have private healthcare, so seeing a private rheumy is not an option.
I understand that painkillers don't really help with PMR inflammation. I was on 10mg (fairly comfortably, i.e. pains were bearable) for a while when I started MTX in mid September. MTX has made no difference (I was told it can take up to 12 weeks to kick in) and, in fact, as I was reading through my medical file I saw that my rheumatologist wrote to my GP in May saying "Unfortunately, steroid sparing agents are not effective in this condition"... so why on earth did he start me on them in September?! It's just nonsense and I have lost faith in him.
When pains got worse a couple of months ago, I increased pred without consulting with doc. I had been on 10mg... tried 12.5... then 15.... then up to 20mg which is the highest dose I've been on since starting taking it. This time, even at 20mg, the pain was still bad, but I didn't want to go any higher without approval from consultant. (I was on 20mg back in January, and had reduced slowly over the year.) I managed to get a telephone consult with rheumatology nurses and they told me I should reduce pred every week... despite being in pain. None of it makes sense.... which is why I'm looking to get a second opinion.
I'm actually wondering if I have something other than PMR... or on top of PMR... maybe fibro, as I do have many tender points - particularly shoulders and hips... but do not have the muscle pain/weakness in thighs/arms/shoulders I read are common with PMR.
If anyone in London is happy with their rheumatology team and can recommend them, I'd be grateful.
0 likes, 4 replies
EileenH JW89
Posted
Dr Rod Hughes at Ashford St Peter's Hospital Chertsey is unbeatable in the opinion of quite a few patients on the forums! Google him for more info - he also does private work. He is heavily involved in PMR research.
You sound to have a right one at present! "Here, take this second drug with its own side effects - but I won't tell you that it doesn't work in PMR!"
Can I suggest that possibly what is causing the back problems is myofascial pain syndrome? It is common alongside PMR but responds better to localised management - e.g manual mobilisation of the trigger points that form in pairs on either side of the spine, in the shoulder muscles, about rib level and in the lower back, about where the baby's dimples are. They coincide with some of the fibro tender points - and that I believe is the reason a lot of PMR patients are told they have fibro when they don't. Steroid injections in the area also work well as does intramuscular stimulation (available in several physio clinics in the London area) and Bowen therapy if you want to try a totally non-invasive therapy which quite a few of us have found helps a lot.
JW89 EileenH
Posted
Thanks Eileen. I couldn't believe it when I read rheumy's earlier comment. I'll certainly challenge him about it if I bother going back to see him. I'm not sure if myofascial pain syndrome quite fits, but am hoping that physio may be able to come up with some ideas. I'm not chasing a label as such, just want to find the right treatment to alieviate the pain and if the fatigue can be reduced, that would be a bonus. I don't feel I've made any progress at all over the last year.
One of the GPs at my surgery is a bit of a numpty too.... his comment when I last saw him to get new prescription for pred was "well, nobody would ever know you're in pain by just looking at you". His colleague is much better, but when I need an appointment, I can't pick and choose and have to take whoever is available. Will look into bowen therapy too.
EileenH JW89
Posted
I suppose the answer to that is "Well no-one would know how stupid you are by just looking either."
Dear heavens - I went to uni with them, were they that daft then?
JW89 EileenH
Posted
LOL! Brilliant. Hopefully I'll remember that retort as I'm sure I'll have other occasions to use it. You've brightened my day!