Some advice please

[Sandybo]

Hi everyone,

I don't post very often but am an avid daily reader of the forum which is a lifeline to people like us. Also it has made me realise how lucky I am compared to many others. A brief recap on myself. Diagnosed pmr and gca sept 2014 after having pain gradually getting worse and on looking back for quite some time, It came to a head last sept when the sight in my right eye gradually faded and then just as gradually came back - 20 minutes from start to finish, also had jaw pain. Lucky my brilliant GP was on the ball and put me on 60mg pred immediately, saw rhuemy 3 days later (w/end in the middle) biopsy neg as expected. In a nutshell on 60mg pred for 4 weeks (crp & esr good by then) reduced every 2 weeks until at 10mg then stayed at that for 4 months, then reduced by 1 mg every 4 weeks until at 5mg which I've been on for 2 months. The 60mg preds were absolutely brilliant as they took away all my pain within a couple of days, for the first time in ages I could get in and out of the car no trouble, also in and out of the bath once more, and turn over in bed - no pain! BUT as you all know the side effects were horrendous. Lucky I'm a retired farmers wife (66) with a really supportive husband and family that I was able to give in to it and just do what I could and when. Now, 12 months later I have been so lucky in my reduction of preds but have just started having odd little niggles in my shoulders and hips, nothing too much, and am much better in myself.

Saw rhuemy yesterday and apparently my esr and crp have been slowly creeping up each month for last few months. He wants me to have a scan of my aorta to check if any giant cells and depending on the result will either reduce preds or put me on methotrexate. I am wondering what are the pros and cons of being on either prednisolone or methotrexate, any advice please from you good people who know more than me?

Sorry my post is so long, thank you all and good luck and best wishes to all.

Sandra.

[Celtic PMRGCAuk volunteer]

Sandra, firstly a negative biopsy does not rule out GCA/Temporal Arteritis as sometimes the large cells they are looking for can escape the tiny portion of artery removed.

It would seem that your recent problems with increasing blood test markers and "odd little niggles" reappearing are simply down to you having passed the steroid dose at which your level of inflammation was being controlled, thus allowing that inflammation to take over and the blood test markers to increase.

Although your rheumy is wisely arranging a scan to rule out any aortic involvement , I don't understand why, depending on the result, he is considering then reducing Pred or adding in Methotrexate at this stage, rather than advising an increase in Pred in the first instance. In any case, in the event of GCA, there isn't much evidence to show that Methotrexate helps - in fact, one expert I heard talking recently said that MTX was poorly tolerated. There has recently been a large study carried out on Toxilizumab for GCA but although the trial is completed I haven't heard of results being announced yet.

Being at 5mg just a year on from diagnosis, especially having had to increase to 60mgs along the way, is certainly no mean feat - flares can be quite common in the first year or so, mainly caused by reducing the dose too quickly.

If it was me, in the first instance I would try increasing the steroid dose to where you last felt comfortable - some experts recommend a hike of 5mg to control a flare, although you could try just increasing to about 8mg. If that works, then it will prove that you overshot the original dose that was just controlling the inflammation but reducing further was a step too far, for now. Reducing thereafter in just 0.5mg steps may prove more successful next time around, at least allowing you to see at which dose the inflammation may be rearing its ugly head and stop it in its tracks.

[PMRpro Ambassador]

Celtic has said it all. I too think you probably did have GCA, it was caught quickly and you have been very lucky in your reduction but are now just under the dose you need to manage the residual inflammation.

However - I'm impressed he wants a scan looking for aortic inflammation but I'd be even more impressed if he'd said he wanted a general scan to see if there was any inflammation lurking elsewhere. Since I can't imagine the scan will just show up the aorta I hope he asks for it all to be reported.

It sounds as if either he isn't considering PMR as the reason for the problem or, if he does, he thinks adding MTX is better than adding a bit more pred. Below 8mg the side effects are usually minimal and I'd prefer 8mg pred to adding in another drug with its potential side effects.

On the other hand - if he finds aortic inflammation he will use pred.

[Gosingen]

Sandra, I've tried Methotrexate, the injections, unfortunately it didn't agree with me, so I had to stop. Just to say you take both Pred and Metho together, the idea is that in time the Metho will allow you to reduce your Pred to an acceptable level, and possibly come off them completely. Your Rheumy will advice you about all this.

I know of a few people who have had success with Metho. I think when you have our illnesses you get to a point where you try anything to see if it works.

There are other alternatives as well, do talk to your Rheumy about it.

I've enjoyed reading the replies by both Celtic and PMRpro.

On the plus side you have done well to get to 5mg Pred, let's hope you can return to this dose soon without other medication.

Wish you good luck with your scan and decision about Metho

[Sandybo in reply to Gosingen]

Thank you all three, but especially to Celtic and PMRpro. What you have said is just what I needed to hear to be armed with this information for when I see the rhuemy again. Also PMRpro I think you're right saying that my rhuemy may not be considering PMR at all as he has never mentioned that. It's something that my GP and I agreed that I've probably had for some time by the fact that the high dose preds needed for the GCA dealt with my previous pain. My rhuemy expected for the biopsy results to be negative and said before I even had the biopsy that he didn't doubt me having GCA. His colleague that I saw yesterday but who liaised with him after she'd discussed and assessed me, said that as there were no giant cells in my biopsy they thought it best to scan my aorta to check if there were any there. I am hoping not and that my preds after the scan results will be reduced even more slowly without having to take Metho which I am not happy about. The reason for this is, on reflection since posting to you, I am a retired farmers wife who has done a lot of physical work in the past and now that I am feeling better I have been doing a bit more in the garden sometimes involving - a wheelbarrow, chippings and a shovel! As my niggles are not daily I am hoping this is the reason for them a few days after I've been busy. However I thank you all very much for your replies, so very helpful and encouraging, I am going to make notes from what you've said to put my thoughts to the rhuemy at my next apt.

I have to stop for now but will be posting with another question hopefully this evening.......sorry!

Sandra

[Celtic PMRGCAuk volunteer]

Ah, Sandra, "a wheelbarrow, chippings and a shovel"? I think you've answered your own question, especially as you say your "niggles are not daily"! Your muscles will have been weakened by the high dose steroids and can rebel quite easily if asked to do too much. It's all a case of doing it in short bursts and, if that doesn't work, not doing it at all for a while longer. I found that gentle massage, heat treatment and ultrasound by a knowledgeable physio helped.

[Sandybo in reply to Celtic]

Thank you Celtic, that's made me feel much better, I will take your advice.

Sandra

[PMRpro Ambassador in reply to Sandybo]

Yes - wheelbarrows, chippings and shovels should be banned substances for someone with PMR! Spoons, spoons...

butyoudontlooksick.com/arti...

[Gosingen in reply to PMRpro]

Love the spoons bit. Tx for the link, very useful analogy. I must remember to count my spoons