Hi friends, since my last post about 2 months ago when I mentioned that my rhuemy wanted me to have my aorta scanned to check on giant cells ( my CRP &ESR had been creeping up) before deciding the next step with my pred dose. I had a CT scan on 30th October the conclusion of which was stated as: subtle thickening of the ascending aorta and juxtarenal aorta. I do not think the appearances are enough to make a confident diagnosis of large vessel vasculitis though this remains a possibility. PET may help depending on the current degree of immunosuppression. I was then sent off for a PETCT scan 20 days later and received this from my rhuemy today: PET scan clearly shows you have an inflammatory process affecting the large vessels. This can occur with giant cell arteritis. Treatment of choice is prednisolone and methotrexate. Your most recent inflammatory markers revealed CRP 8.2 ESR 40 which suggests the inflammatory response. Is still raised.
To dampen down the inflammation I suggest you increase the preds to 40mg a day for a month and as long as your blood tests have normalised reduce the dose by 5mg a week until on a maintenance dose of 5mg od. I am arranging for you to see the pharmacist at Treliske to commence Methotrexate, I feel both strategies need to be employed.
Why do you think he thinks I need the mtx as well as pred's? Do you think the preds reduced at the appropriate time using the dead slow and nearly stop method should be good enough on its own? I have read about the dreadful side effects of mtx and with having to up my preds to 40mg will be bad enough (I expect I'll be like a zombie again plus all the other side effects I had before when on a high dose) without having to cope with another drug as well.
Sorry for such a long post but I know you good people like to have all the facts to give your thoughts too.
Many thanks for people like you! When my daughter read the rhuemy's letter she said 'better get on the forum to your mates'!
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Sandybo
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Sandybo, I think rheumies think that Methotrexate will help us reduce more quickly off the steroids which is always very important to them and so a lot of them are very keen to prescribe it. I think the jury is actually still out on how well it works. I must admit in my opinion the suggested reduction is somewhat on the fast side, with or without Methotrexate. I would reduce as you feel fit using the slow system and any problems stop reducing until you feel OK to carry on. The rheumy does not have to put up with the pain.
I agree with piglette. Really not convinced about methotrexate nor about his suggested reduction. If he was looking for query aortic vasculitis why did he do an ordinary CT first? PET-CT would have been the imaging of choice. Where are you?
Caro12line has exactly the same problem. Maybe she can offer some insight.
Hi Sandybo... As PMRPro says I have the same problem. PETCT scan showed inflammation in Aorta Arch and Subclavian Arteries. Which would suggest GCA but they only way they can positively detect giant cells is with a biopsy. My CRP is up and down all the time but I keep getting random infections.. UTI, Shingles, Pleurisy. So that is muddying the waters a bit. My CRP did go up to 111 when I had the UTI. When I got Pleurusy it was 38 and the GP said to up the Pred to 30 for one week. I did 30 then two days 20, two days 15 back to 10. Where I was before. My CRP dropped to 6.
The difficulty I have is that the GCA does not present with any symptoms. So the frustration is, the Pred is probably causing various infections because of lower immunity but the doctors don't want me tapering down in case the raised blood markers mean GCA flare. So it's a catch 22.
Currently my CRP is back up to 17 and WBC is at 18.1. But I feel absolutely fine.
Sorry for the rambling!! My personal suggestion would be to do 40mg for a week, 35mg for a week, 30 for a week, 20 for a week and then have bloods done again. If CRP has dropped continue the taper down to your maintenance dose.
methiotrexate is used as a disease modifying drug in vasculitis. I don't know for certain but it may well be that you will get more benefit from combining the prednisilone with Methiotrexate. I think you need to have another conversation about what the possible advantages of taking the Methiotrexate are. Does your rheumatology clinic have a specialist nurse you can phone?
If not I think I would want to ask the prescribing Doctor if taking the Methiotrexate is going to help in the long term to protect your large vessels against damage.
I take methiotrexate 25mg by injection once a week and I don't suffer from any major side effects but everyone is different.
You have a lot to cope with at present, you can take a bit of time to take advice and decide what you think is best for you.
Thank you very much for all answers both yesterday and to Caro12line and Sallyaches today, all very much appreciated. I have been giving the matter a lot of thought and am hoping to be able to see my GP on Monday morning to talk to him about it, also I am supposed to be seeing the pharmacist who will be giving me the MTX and discuss it with him soon, so I'm making a list of questions to put to him. Thank you Sallyaches for adding to my list with your thought of wether MTX will help long term to protect my large vessels against damage. I also want to mention my pred reduction from 40mg to a maintenance dose of 5mg as I agree with Piglette and PMRpro that that is too fast. However I must add that for several weeks now I have not been suffering very much in the way of pain, only if I have overstretched myself. But I have had an unexplainable painful wrist this week that made life difficult for three days, but is now almost better.
Thank you all again, it's such a help knowing that you are there to give good advice whenever it's needed.
Methotrexate is a disease modifying drug in rheumatoid arthritis - but as far as I know it doesn't modify the disease progression in PMR or GCA. If it did so reliably then they'd use it and not pred. It is said to work as a steroid sparer because it changes the way your body processes the pred and potentiates its effect - more effect for less pred. But it doesn't work for everyone and some people have found that while they were apparently able to reduce the pred dose to start with, the effect seemed to wear off (that happens in RA too) and/or they had a major flare which meant a return to a much higher dose. The main cause of flares is reducing too fast or too far - so the question remains as to whether they might have been able to reduce with a far slower/smaller steps reduction of the pred dose. There are several people who have been able to reduce their dose far further than previously when they changed their reduction plan to 1/2mg steps or the "Dead slow and nearly stop" approach which smoothes the steps even further.
Thank you PMRpro, my head has been spinning trying to get around all the information I have and have been getting. But your last message to me has finally made sense and I feel I now understand the situation. I await tomorrow to see what I can sort out.
Hope you got on alright! You may like to know that, at PMRGCAuk we are informed by are medical advisory panel that, if there is going to be a bad reaction to methotrexate, it will occur very quickly after the start of treatment, and the patient can be taken off it without any ill-effects. That is not the case with steroids of course - there the side effects are cumulative.
Thank you very much for that info Kate, I did wonder about it bearing in mind if I had a problem with it over the Christmas period. I haven't started it yet as I'm still waiting to hear from the pharmacist at the hospital who is going to explain about and start me off on it.
I got your book last year after being diagnosed and found it very helpful, I am now going to read it all over again to refresh myself on certain aspects.
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