Hi I'm due to have a telephone consultation on Monday 21st November, which is my second appointment. I was diagnosed with PMR and Sjogrens syndrome on 18th October.Started 15mg prednisolone reducing 2.5mg every 2 weeks, so now down to 10mg and relatively pain free still.
On my first visit, the consultant said we'd probably introduce another medication to help with tapering. I'm assuming that's going to be methotrexate. I'd like to try LDN as it seems to have less side affects. I'm already losing my hair and feel fatigued most of the time.
I know it's not readily prescribed on the NHS, so willing to pay but will I have a fight on my hands to get her to prescribe it, or at least give her blessing to allow me to try it before going down the methotrexate route? Any tips or advice on approaching the call?
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There is no evidence that LDN works - Prof Sarah Mackie in Leeds wasn't impressed by the evidence she found when she checked it out. Someone in Norway posted that they were starting it some time ago but never came back to tell us it worked - if it had you would think she would have come and told us. One person has posted it has helped them. Hardly overwhelming ...
I imagine you would have to find a private GP to prescribe it and as far as I know there is only one pharmacy in the UK, in Edinburgh, that is able to dispense it,
The reducing schedule the doctor has offered is extremely fast - or is it just down to 10mg? Beyond 10mg the recommendations are not more than 1mg per month - it often takes that long to know that the new dose is enough - and in fact you have been very lucky to get there so quickly. Personally, I would ask to be allowed to continue reducing slowly to see how you get on before introducing MTX. The fatigue you feel is a feature of the disorder - and the speed of reduction probably hasn't helped! I developed unbelievable fatigue with MTX and it was enough for me to have to say no. It probably IS worth trying MTX - enough folic acid should reduce the hair loss problem. Your hair loss now is likely to be the PMR, I lost hair badly, nothing to do with pred, I wasn't on it. MTX does work very well for SOME patients, but there is no way at present of forecasting whether it will be good or bad for you. A trial is underway to see if MTX really does achieve better tapering - the original study that found it did in a small cohort also found it took a year to see a difference and that after 5 years there was no difference in the steroid-associated adverse effects. Another study came to the conclusion that pred doesn't actually cause anything (except cataracts) that wouldn't be found in a similar age-matched population not on steroids. I've been on a lot of steroids for a long time - weight gain with PMR and no pred, lost on a low carb diet while on pred, no change in bone density (no bisphosphonates), no cataracts until now (I'm 70 and been on pred over 13 years), no diabetes (low carb diet), myopathy while on methyl prednisolone, not with prednisolone or prednisone.
Hi thanks for your response. I've tapered down from 15 mg 5 weeks ago, reducing every 2 weeks by 2.5mg till I got to 10mg. I started 10mg last Monday and then it will be 1mg every 4 weeks. Each time I reduced I did 5 to 7 days alternate doses (e.g. 15mg/12.5 mg) and I'll continue to do the alternate day dose for the first week each time I reduce.
It's funny how I immediately blamed the Pred, rather than the condition which came on sooooo quickly. Literally over days. It's given me something else to consider as I really never even thought it could be the PMR!
Although your tapering seems to have gone very well so far -even though it’s on the quick side, please don’t lured into a false sense of security. For many, once you get into single figures, it can become more difficult.
You may be one of the lucky (and hope you are) but just be aware it may not be as easy as you have had it to date.
Agree with PMRpro, don’t really see the need to add in MTX at the moment.
Once I reached 9mg I reduced 0.5mg every 4 weeks. I always had bad side effects, no pain, but felt cranky and off for 5 days. After that, back to normal cheery self. Once under 5mg, the dropping side effects have disappeared. But go cautiously. No rush.
Our hair reflects our state of health - many people lose hair a few months after starting pred and blame it but it was more likely to be the illness. Pred gets blamed for a lot - it isn't always the case! But as DL say - don't get lulled into a false sense of security, be wary and remember, it isn't 1mg per month to zero, it is 1mg per month to the lowest effective dose. Not the same thing at all for most.
Sept 2008. We had a call from 3 people, regarding LDN. We made some enquiries and discovered,it was not licensed for use in the NHS, except for a very limited number of conditions in the UK.
We wrote to the Minister of Health via our MP and the reply was, at that time, clinical trials for LDN had not been done for PMR & GCA at that time.
GPs can prescribe but but we only found one in Scotland (Glasgow). Three people tried it (and it was expensive at that time) and it did nothing for all three. We also found one in England.
You might like to read up on it if you have not already done it the information is from a research trust.
In 2004, the LDN Research Trust charity was founded in the UK, although we help people around the world.
It's a shame there's not been another, more extensive trial to test its effectiveness, especially as it doesn't seem that expensive, but perhaps that's the problem. There's nothing in it for the pharmaceutical companies!
Some Leading Researchers, not only in the UK, have taken a good interest in it as PMRpro has told you.
Believe me, if any pharmaceutical company thought it would be worthwhile doing a proper clinical trial for use in PMR & GCA, they would have done it.
TCZ had been developed for RA and used for around 8 years. Then the Pharmaceutical company had an idea - so it was clinically trialled for use in GCA. The trial proved it was worth licensing..... however the cost is currently around £19,000 pa in the UK. That is why it is only limited to use in GCA and only for one year and a case has to be made for use by your Consultant Rheumatologist if you fit the existing criteria.
I don't disagree with anything above. I am not sure hair loss is anything to do with side effect of any drug? I have been fine on MTX but as has been commented upon, everyone is different. You will only know if your other drugs are stable for you over a while and only then might you start on MTX route - which is what I did. It has worked for me over last 3 years, and I am 62 now (GCA in Jan 17) so this is OK for me. I hope you find right balance for you, and your doc doesn't just prescribe something out of the book for you. Good luck.
I must be the exception - I found this website when I was Googling ‘does pred / MTX make your hair go thicker and curlier’! Mine did, very noticeably, within about 9 months of being on pred, and only started to lose the curls when I got down to about 3-4mg. It’s still thicker than pre PMR and after a year on MTX, I’ve saved a small fortune on hair thickeners, styling products etc!
Gosh that must have been awful. I haven’t noticed anything after almost a year on MTX but it could still happen I guess. I’m now off pred but my rheumatologist advises staying on the MTX for a bit longer.
go toLDN.org website and read all the good things about LDN. I have been taking it for 3 years to help with PMR. It helps me sleep as well. I found LDN on a cancer fighting site. It has been widely used and is safe with no side effects. Start out at 1mg and work up. Gives you weird dreams at first. Most folks stabilize at 3.5 to 4.5 mg daily taken in the evening. Hope that helps.
I spoke with rheumatology this morning and Consultant said that she doesn't want to introduce anything extra unless I start struggling reducing the the Predisolone. She said to expect some discomfort at each reduction, however, if it continues or does ease with paracetamol or cocodomol, then I'm to ring rheumatology for advice. She's going to follow me up in 3 months but I'm to get my bloods done this week to see what is happening since starting Predisolone.
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