So a very long story short, after a disappointing Rheumy visit who after a total 4 minute consult suggested Mycophenloate I went to see my doctor, saying I was reluctant and asked him to take over my care.
He was concerned about my age as I am young (although many are on this forum) for this condition and it seem very resistant. So he suggested I try a another consultant, one he recommended, going Private for a one off appointment.
So I went along today, having had recent bloods taken, apparently showing ESR still elevated. I have reduced by .5 mg a month - still aching but as told by both gp and precious consultant, not to worry about aching.
Had first ever physical exam, where the consultant was shocked how tender I was, how little movement in my neck and shoulders and my scalp and temples were tender.
So she want me to go up to 9 or 10mgs of preds and want to put me on leflunomide or mycophenolate - she says the diagnosis of GCA seems correct but is unsure if I have inflammatory arthritis and/or PMR so the above meds may help on that level too.
Any idea which is better? I am feeling drawn towards leflunomide ........ also extremely disappointed as I got to 7.5 for 2 days
She was so much more approachable that the other consultant, has does do NHS clinics and has suggested my doctor contacts her direct and hopefully I mag get on her list.
Many thanks as always
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lesley2015
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It's good to hear that she was more thorough than usual. I have been on both Leflunamide and Mycophenelate. Neither helped at all. Lef. gave me very high blood pressure too! Myco. Seems to have much fewer side effects. I tried it because my PMR has been so reluctant to diminish at all over the 5 plus years, but, as my lovely Rheumy said- there is no evidence for it either way.
I am female, 56yrs 12 month plus into PMR and coming up to 2 months on mycophenolate. I had previously got down to 8mg and had flare. referred to rheum who I saw in Feb 1st time. pred up to 15mg again. down to 13 in about 3 months and markers started creeping back up. then talked 're mycophenolate. I decided to give 3 months. though may be 4 to test if doing anything.
First 2 weeks nausea on mycophenolate at 2x500mg dosage tablets. Then dosage up to 2x750mg felt ok but still flary. Dosage up to 2x1g after 4/5 weeks and very bad headache and face pain with numbness. Saw rheum nurse. Said not side effects of mycophenolate....but of course when I checked again it is. I decided to take 4x 250mg capsules twice a day instead of 500mg tablets. Headache more or less stopped. suspect fillers in tablets.
My markers are down into "normal" range for first time in 13 months. I still have fatigue. Pain depends on activities. if I am honest I am not sure if I feel any better and at times have felt worse. I suspect rheum put me on it because I have had diabetes for 17years and pred pushed me on to insulin. He also seems intent on the idea that I have RA....despite no markers...he ended sentence with .."yet".
I have feeling that I would prefer to be on pred. But "happy" to at least try alternative. The real test will.be when they try and reduce steroids. I will be doing DSNS method. If markers come up. I will insist that would prefer steroids only. I suspect my probs are that GP reduced too quickly and I didn't know any better then.
Sorry for long post. But it's a big step and I wanted to give fulsome answer. even that that ended with errrrr, don't know .
What always concerns me is that none of these "steroid sparers" are guaranteed to spare the pred dose even in PMR - and GCA is an entirely different kettle of fish. They do use these drugs in other forms of vasculitis but it is very rare for GCA and they ALWAYS say corticosteroids are the mainstay of treatment. And now tocilizumab is making its mark.
I also don't like they way they mess about and alter 2 things at once - fair enough, increase the pred dose, see what happens and THEN consider adding a DMARD if necessary. You've already been through a few haven't you - judging by my brief scan of past posts trying to find out how old you are! So with all those attempts - does she not think an inflammatory arthritis MIGHT have been improved then? If 10mg of pred does the job on its own - and it may well do - then that is preferable to 9mg plus another drug and layer of potential side effects. IMHO at least.
Agree with PMRpro - why change two things at the same time - then you won't know which one worked. If you do just up the pred and taper really slowly and that works - great. If it doesn't and you then want to consider something else into the mix then that's the time to do it I personally would feel. Don't know anything about mycophenoloate but have experienced Lefloudomide to a limited degree ( see post yesterday) Let us know how you get on. Glad you've found a Rheumy who is more approachable.
I see you are 56, or were when you first posted. That is by no means "young" for PMR. Also you appear to have first posted about two years ago, and as you will know from following the forum two years is not a particularly long time to be on steroids for GCA/PMR. I hope you find a doctor who is REALLY willing to let you take the lead when it comes to symptom management (enough pred) and speed of taper (avoiding return of symptoms whether gradual or flaring).
Firstly, thank you all for your replies I have read everyone and taken on board all your comments.
PRMPro, I have copied the study and intend to take that to my GP tomorrow. I would like him to take over my 'care' and I have also made the decision I do not want to go on any sparer's, I think this will go down like a lead balloon!
Why are we not 'consulted' over our treatment, I seem to just be told this is what you are having!
However, I feel lots better than I did 6 months ago, heaps better than a year ago and massively better than 2 years ago - so I am going in the right direction - therefore feel justified in my decision.
I am not convinced that much of the pain I am struggling with is not exacerbated by arthritis, I know the PMR and I know the temple pain - but some is joint - which is not taken into consideration. (Arcoxia helped but I had to come off this)
All temple pain has gone today on 9mgs, so happy to sit here on this dose for a while rather than try another medicine .... lets hope the GP will support this.
Could you give me some idea if you all have regular blood tests, the consultant asked me this yesterday. I seem to only have one if I have a problem. And she also said I should have the pneumonia vaccination .... any thoughts on this I do have the flu one .....
If you are in the UK your GP cannot give you the "steroid sparers" as far as I know - they must be prescribed by a specialist. I think you are probably right - I tell people all the time that they will look back in a year and see how far they have come - and you are doing so!
Both my NHS Rheumy consultant and the recent private consultation with another consultant recommended the sparers.
However my GP is now writing to the consultant because my ENA , which followed later than the other results, show positive and he wants to clarify if this is still her tx of choice.
Meanwhile, he wants me to go up a bit on steroids.
Yes hes is good - its my consultant up until now that has been utterly useless - so I have done a one off private consult, could not afford to stay private though, But she does NHS so hoping to get on her list, my GP is writing directly to her.
Given the options from an ENA result I'd suspect it makes far more sense to stick with pred until it is decided which it is most likely to be. So kudos to your GP - better not advertise him too much - everyone will want a share
And all dmard do that. Been on cellcept for years no major infections etc. Hasn't caused me problems. It should always should be a personal decision based on evidence and personal needs and response to a drug. As pro says this thread is 3 years old.
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