Methtrexate, Pred and...........Gorillas?

Posted , 10 users are following.

I saw my GP yesterday for the first time since I had been diagnosed with PMR. He had received a letter from the rheumatology clinic asking that he prescribe something for bone protection and something for stomach protection. 

He has prescribed Ranitidine for the acid because even though I take the pred half way through a bowl of porridge I still get a lot of acid, and alendronic acid for bone protection.

I have agreed to take the alendronic acid without first having a bone density scan because, I am 70, stopped HRT around eight years ago and because of my back problem have, for the past few years, led a very sedentary life.

He told me to continue with the supplement I was taking (called Osteoguard which contains calcium, magnesium, vit D, vit K and boron) as the alendronic acid takes calcium from the blood and deposits it in the bones

I didn’t think to ask at the time but does anyone know, is pred bad for the bones because it keeps the calcium in the blood so it is not deposited in the bones?

As for the Methotrexate, it is a very tricky one! He said that Methotrexate is horrible, toxic stuff and he would hate to have to take it but, on the other hand he would also hate to be on long term pred as it will certainly not probably cause problems. (‘What you got ‘ere luv, is a gorilla’)?!!

As for the MXT and my current medication, he checked quite carefully and said it was not a drug that was listed as not to be used.

He gave me a copy of the letter the nurse had sent him which also said they would be reducing my pred by 1mg a month from my next appointment.

My next appointment at the rheumatolgy clinic isn’t until 30th July so I have until then for this to yo-yo in my mind, helped of course by your informed responses for which I am very grateful.

You will guess from the quote that I read the post “The gorilla in your house” I think this is an amusing, but clever way of looking at things. I know we are told we must “own” everything these days but I think if people could ask “How is your gorilla today?” instead of “How are you today?”  You could tell them the gorilla was quite calm at the moment without them thinking it had permanently turned into a pussycat!!!!

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  • Posted

    Pred tends to increase the loss of calcium via the kidneys - the thought about supplements is that they increase the pool of calcium and so more gets to the bones. I have only ever taken calcium/vit D supplements and after over 7 years on pred my bone density had still barely changed and was still very nicely in the middle of the normal range.

    I really don't think there is any evidence at all that taking methotrexate shortens the time you are on pred. It MAY allow you to manage on a slightly lower dose of pred - but I know people who have been on mtx for some time and still required 7 or 8mg pred. I recently took it for 4 weeks but the side effects were too much - I itched, had a 3-day headache mid-week (I never have headaches), I bruised even more easily and felt flu-ey most of the week (I felt better the day I was to take the next dose) but above all the fatigue was overwhelming and I felt worse than I had ever felt in 5 years of PMR with no pred! I stopped it (as agreed with the rheumy) in order to go to a science meeting in S Korea - I will not be starting it again. Quality of life is the most important aspect of living with my gorilla - and mtx did not fit with that concept. It is perfectly possible to reduce the pred dose to quite low levels if you go about it right - SLOWLY. At least you are being told you should reduce at 1mg per month so your rheumy must be fairly sensible!

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    • Posted

      Thanks very much for this Eileen. I am really baffled by the MXT.  If it helped people get off pred I could see some point in prescribing it for PMR, but whatever happens someone is likely to be on pred for at least a couple of years with or without MXT.  I am not very good at standing up to the medics when they are eager to prescribe their new wonder drugs, but this time I am going to have to.  Their is little point in adding a highly toxic substance into my already struggling body!!

      I will continue to take the calcium and vitamin D supplement, but here is another question!!  Various internet sites say calcium carbonate needs stomach acid to absorb properly so people with reduced stomach acid should take calcium citrate which doesn't need stomach acid to absorb. As I am taking Ranitidine should I take calcium citrate or do you think this is unnecessary?

      Thanks again for stiffening my resolve!

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    • Posted

      Very possibly - but the carbonate I use has been fine judging by my dexascan results. I haven't investigated the citrate form - I'd have to pay for it anyway!

      I was discussing this all with a top immunologist at a science meeting last week. She thinks it is not a good idea to pile up the immunosuppressive medications for various reasons and that a low-moderate dose of pred is preferable to heavy duty immunosuppression however long it takes given that it doesn't have a guaranteed result. Though I doubt that rheumies see it the same way!!

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    • Posted

      I didn't know you could get the calcium on prescription. My GP hasn't offered it!!

      Thanks for this further information.  As I have said, I will just have to stand firm. After all I haven't even started reducing yet so no-one knows at this stage how low I will be able to go.

      Your life sounds very interesting and you have a vast amount of knowledge, are you still working?

      Thanks again

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    • Posted

      Not for pay! I was a freelance translator and about the time my husband took early retirement from the NHS (couldn't stand it any more) my work was falling away after the financial crisis - I worked for another year but living in Italy the fixed costs of running a small business were more than I was earning so it seemed a bit pointless! Gives me time to do this...

      You should be offered calcium/vit D combined by your GP as you are taking pred. No doubt some will try to wriggle out of it! Calceos or AdCal are the usual - if one doesn't suit you ask to try a different one.

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    • Posted

      Re the calcium you can only try it and see.  Eileen has been fortunate in that calcium carbonate works for her (I tried taking that kind first and found it very hard to tolerate, long before PMR/pred btw) plus her bone density has remained fine for years without having to seek out extra supplements like Vitamin K2, but maybe that's because in some areas food supplies this vitamin and in others it doesn't, especially considering natural Vitamin K2 usually comes from animal sources (except for some fermented vegetables) and it depends how cattle and poultry are raised whether or not they can supply us with adequate Vitamin K2.  Some people may also be more efficient at converting K1 to K2 than others are.  So there are a lot of factors to consider; we are all different and have different needs and capabilities.  I was diagnosed with low bone mass within three months of starting pred, no idea what my condition was before pred, but there's no way I could risk not doing all I could, including seeking out the best form of calcium and making sure I was also getting enough, but not too much, of the other micronutrients needed for bone health.

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    • Anhaga
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      Posted

      And, for context, none of the supplements I take are covered by either our government or our private insurance.  (Canada)  Not even something I can claim as a medical expense against income tax.  
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    • Posted

      Almost the same here really. The doctor can prescribe calcium carbonate and vitamin D (although I didn't know that until Eileen mentioned it.  Mine hasn't offered!) and that would be free for over sixties and certain other categories.  But if you want calcium citrate and K2 you would have to buy your own.  Whether you can claim this back on private health schemes I don't know.

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  • Posted

    I would agree with Eileen. Vitamin D for bone density and stay off methotrexate.  Certainly did nothing for me when I took it, had no effect on prednisone, and the side effects you read about online are frightening. I stopped taking it cold turkey.
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    • Posted

      I can see that you would put up with such a toxic drug if you had something like cancer and it was saving your life.  But to take it just in the hope it will reduce the pred a little does seem extreme.
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