Could i ask Eileen who does the drainage and is it an easy process
It's like a very specific massage - to encourage the flow of fluid in the lymphatic system, they work upwards from your feet towards your heart as part of it. You just lie on the couch while they do it, nothing hard work at all! I couldn't believe the effect - both legs were quite puffy and he started with the worse of the two. It took about 40-45 mins and we agreed I'd get in touch if I wanted/needed more. Within a few days BOTH feet were back to normal - I could see I had ankles again! It was 4 years ago after I had been quite ill. Since then I have lost a fair bit of weight and I have had no problems again since. I do find that as soon as I eat out my feet puff up a bit for 2 or 3 days and then are back to normal. I use no salt at all at home and of course they use a fair bit in restaurants - but I'm always surprised how much difference it makes. I can put on up to 2kg just from that if we are away and eating out a lot! You say you are on your feet a lot - I presume you use support tights?
Here where I live in Italy it was a physiotherapist who suggested and did it. Massage therapists would also do it I imagine. I know that it is offered in the UK for cancer patients, especially after breast cancer surgery because the lymph nodes under the arms are often affected. It seems to finally be accepted in the UK - it's been used in mainland Europe for many years.
I googled manual lymph drainage UK and got several links - including the NHS and Macmillan cancer. mlduk has a page that you can search for the nearest qualified therapist to you - they are not just people who have set up on their own, they are properly trained.
Just quickly, there's a series of excellent videos on the internet demonstrating how to perform lymphatic drainage on oneself. It could be useful once you've been professionally treated to keep yourself in better condition. Google self lymph drainage massage.
Thanks Eileen. I live in sydney australia. I will find someone here who can help. Thats exactly what you described that i need. I wish to see my ankles again. I work at sydney international airport for an airline and cinstantly running around from gate to gate. I do wear stockings but in the heat at the moment gets quite uncomfortable. Thanks for the tips let you know once i have it done.
Thanks for that i will
Hi Mirella,
I'm the one Anhaga referred to on MTX and the biological (called Actemra/ Tocilizumab) - also from Australia. A brief history:
- Diagnosed by my GP Dec 2014 (happy 2 year anniversery Flip!)
- Started on 50mg steroids
- Unable to get below 20mg and getting sicker by Dec 2015
- Referred to a rheumy who put me on 20mg MTX
- Got down to 10mg pred over several months but unable to get below that
- Started self injecting Actemra (the biological Tocilizumab) three weeks ago
You are definitely NOT too young to have PMR and otherwise he sounds like a fool! So now I'll explain the process of how things work and maybe why he's saying he wants to treat you as having RA (and this is just a guess).
In Australia you can't get Actemra unless you have RA, so I had to get 'reclassified" as having RA (even though I definitely have PMR, not RA!) and take Plaquenil for three months - to 'prove' it didn't work and to qualify me to start on the next defence - Actemra.
Researchers are having great success treating PMR and GCA with Actemra, (Google 'Tocilizumab' and 'remission' and you'll find some decent articles to read) but it's still in the early trial phase and you can't get it for PMR. So by reclassifying me as having RA I qualify for the RA Actemra trial - worth $10-15k a year!
I am about to post about the results so far, so take a read.
No Flip, closer than that - not early trials phase, submitted to FDA for approval and it already has "breakthrough drug" status. They are reconsidering the advice in the UK which this summer was "not for GCA" - so things are moving.
Is this a replacement for prednisone or a cure?
In GCA? They don't know yet. The trials were done with pred and tociliczumab being started at the same time and then the speed of reduction of pred was looked at. Some people (as far as we can tell) were off pred in 6 months with no flares and remained symptom-free - but I haven't seen the full report of the results yet. The study itself is completely finished - the follow-up to see how long patients remain symptom-free is still ongoing. It certainly revolutionises the early treatment of GCA - and it has achieved breakthrough drug status on that basis - but funding is going to pose problems I suspect until they can show patients who previously were unable to get off pred could with TCZ. It will hang on the potential cost-savings and for many countries they don't have them all in one purse - yes, patients not being on pred for years and developing diabetes, osteoporosis/fractures, all the other longer term risks of pred, will save a lot of money but some of the costs aren't seen directly in healthcare.
Still - if 6 months TCZ saves several years of high dose pred the potential price tag of some £6K may be approved. If it requires the person to stay on it indefinitely, at £12K per year it will be another matter I fear. And that isn't clear yet.
I would be happy to pay the exorbitant fee if it meant not getting the side effects and illness that comes with long term pred (too late for me!) But, I'm in the lucky position of being able to pay now - once I retire I wouldn't have a hope.
Hi Mirella, since you're in Sydney I can recommend a rhuemy - he comes to Canberra once a month where I live and consults here. He's VERY good. Google Jayaweera