Some more advice please.

[Sandybo]

Hello again everyone, I hope you managed to enjoy Christmas without too much pain or suffering. I was very lucky, although feeling very fatigued with fuzzy head and balance issues plus more from being on 40mg pred, I haven't had to cook a meal since Christmas Eve, my family have been taking turns in feeding my husband and myself.

Now, first of all a recap, I posted at the beginning of December that I'd had a PETscan showing I now have 'Christmas tree' GCA as PMRpro describes it and my rhuemy wants me to take MTX alongside preds to help dampen the inflammation.

First of all, I have just had 4 weeks of 40 mg pred which my rhuemy wants me to start to reduce now by 5mg a week until on a maintenance dose of 5mg providing my blood results are ok. The results have dropped back to CRP 0.60 from 8.2 a month ago and ESR to 8 from 40 a month ago, so yesterday I dropped my preds to 35mg, obviously I'm not happy with continuing at 5mg per week right down to 5mg maintenance dose and am keen to adopt the DS and NS reduction plan, my question is should I start this plan now or get a bit lower with my preds before introducing it? I have also just started taking my preds at 2-3am in the morning as I'm only getting 3 hours max sleep by night at the moment is this ok?

Next, I'm seeing my rhuemy next week so want to be armed with info to put my case to him not only about the preds but the MTX he wants me to take. I saw the specialist pharmacist last week who was very helpful re MTX, he (as did my GP who I saw before Christmas) thinks I should take it and has given me the tablets with instructions to start off at 10mg increasing every two weeks by 2.5mg until I get to 25mg, plus folic acid 10mg 24 hours after the MTX one dose a week and weekly blood tests. I have not started them yet as I wanted to enjoy Christmas as much as possible also the blood tests had to be set up with my surgery who were on their Christmas break by now.

The plan now is to possibly start the day after I see my rhuemy again next week so that I can discuss it further with him.

The pharmacist also mentioned that my rhuemy is doing a research on patients liver who are taking MTX, it would involve regular scans of my liver and would I wish to take part, I said yes as it would be in my interest to do so, but on researching about the scans myself I find that they involve a tracer which I guess is radio active being injected, do I want this going on in my body as well I ask myself, why do things get so complicated sometimes?

Sorry for such a long post again but I would be so grateful for some advice and guidance from you good people.

Thanks for all in the past. Sandra.

[PMRpro Ambassador]

Are you sure it is radioactive tracer scans he will use? They may be done occasionally but I just asked my husband what he thought. He used to run the department that did such scans and he thinks it is far more likely they'll be doing CT scans which don't always use a tracer and there are different sorts of tracer, some of which are very low radiation dose - you know, about the same or less than a transatlantic flight! I would almost certainly say yes - though I would want far more info first like you. But a long term study done on otherwise healthy subjects (i.e. not cancer, for example) must pass through approval by an ethical committee and using risky levels of radiation wouldn't pass.

As for the MTX - seems a fair way to go about things though have you asked the rheumy about tocilizumab? I'm a bit surprised at his expressed intention to go down to 5mg - I hope he is going to be open-minded about your side of things too. MTX doesn't replace pred - and 5mg is a very low dose, it would be nice though!

A study in Germany found the ideal time to take pred for avoidance of morning stiffness in RA was 2am. The cytokines that cause the inflammation are shed in the body about 4.30am - taking pred at 2am means it is there waiting for them and inflammation is not able to get going. How important that is in GCA I'm not sure - but if it suits you, that is what matters most.

The idea behind the DSANS plan is to reduce the effects on you of the reduction in dose - I'd only start to use it when you think you are feeling the change. Your rheumy is looking for something other than the most exact dose that manages the inflammation so as long as you feel OK with the reduction that is fine. For some people 5mg at a time is OK - we're all different.

Now my thoughts: To me it seems awfully fast to be honest - why 5mg per week after only a month on 40mg? I could understand 5mg every 3 or 4 weeks, even 2. A study done between the Southend rheumy dept and a group in London (UK, of course) has shown that there is evidence of inflammation in patients with GCA and other forms of vasculitis even after 6 months at high dose pred, i.e. above 20mg, even though the blood markers are apparently normal and the patient has no symptoms. They were following the presence of neutrophils, one of the white blood cells, and are hopeful that it can be developed as a better monitor of GCA management. The action of pred in GCA is almost certainly via the neutrophils. But that's just my thoughts - but I would love to know why he wants to go that fast.

[Sandybo in reply to PMRpro]

Hi PMRpro, thank you very much for you excellent reply.

No I am not sure about the means of scanning, so much to take on board that day with the pharmacist that I hadn't got that far with my thoughts, I'm thinking now that it will be as your husband said as I was sent to another hospital 80 miles away for the PETscan and I did actually ask if I would be scanned where I was with the pharmacist that day and he said yes, but that's something the rhuemy will know on Monday.

No I haven't asked about tocilizumib - not sure how to pronounce it, are you able to split it up for me please? I have only recently heard if it so will also mention that.

Thanks for the DSANS info, I am always awake at that time so thought I would try it and see if it makes any difference to how I feel each day, I'm hoping maybe the evenings may be a bit better - we shall see.

Now to the reduction, I cannot understand why he has said (it was by letter so another thing to question on Monday) to reduce by 5mg a week until all the way down to 5 mg, yet when I was first diagnosed with GCA I was started off at 60mg, after 5 weeks cut back to 30mg, then five 5mg fortnightly until down to10mg where he told me to stay for 3.5 months. I was then reduced by 1mg a month until I got to 5mg and that was where I was at when I had to go up to 40mg again because my inflammatory markers had been steadily rising.

I've been keeping yearly calendars from September 2014 showing 12 months per page all highlighted in different colours to easily show my pred rates, I shall be taking that with me to 'aide memoire' on Monday!

thank you once again PMRpro for your invaluable help since I've been on this forum, it's a comfort knowing people like you exist.

Sandra.

[PMRpro Ambassador in reply to Sandybo]

I assumed it is tos-illy-zoo-mab or something like that - there is a video: youtube.com/watch?v=7FxQdIO...(Not working as expected?) and I think he is saying that!!!!! Except I don't have a US accent...

It is something called a monoclonal antibody (-mab), a "biologic" already used in RA but a clinical trial using it in GCA has just finished and we're waiting for the results - but, if the rumours are anything to go by, it sounds promising! Pricey - so probably to be kept for the difficult cases. Unless someone manages to come up with a really sensible cost-benefit analysis that includes ALL the side effects of high dose pred.

If your markers were steadily rising BEFORE 5mg then surely reducing you quickly to the point where they started to rise (I'm assuming 10mg?) would make more sense - then try more slowly from there with the MTX on board to see if it does make a difference. The trouble is, when a flare happens the next reduction of pred doesn't always follow what happened the previous time - and yoyoing has a habit of making subsequent reductions more difficult. My feeling is I would prefer to not risk another flare.

I'm impressed at your record-keeping! It is a very good idea though because that way you have far more details of how you responded to doses/reductions etc than ever appear in the doctor's notes. Which is even worse these days with electronic records!

[Sandybo in reply to PMRpro]

Many thanks again PMRpro for your latest reply and the video link, it was very helpful.

Sandra.