I started to take Methotrexate in May and my levels were: ESR around 20-22 and CRP around 14-17. In July, as the Methotrexate kicked in ( or so I thought) they went down to 16 and 12 respectively. I also stopped most of my work at this point as I kept getting viruses all the time. My last blood test at the end of August showed the levels going up to 21 and 14. During this time, I have been reducing the Pred. from 15mgs to 10mgs, 1mg every fortnight. Today, I am feeling very sore all over and the familiar fatigue that I haven't had since July. Does this mean that the Meth. isn't really doing anything? or that thePMR is flaring? or that the steroid reduction is too fast, too much etc.? Or, should I hold on till my next blood test at the end of this month to see if the results are the same ? I don't really know how significant these results are.
How much notice to take of ESR and CRP levels? - PMRGCAuk
I don't take any notice of raised blood markers because I don't and never have had any. Not in 12+ years or so. However, I am certainly missing out here as those patients who can use their markers to plan reductions are one jump ahead of me, I have to go on symptoms alone.
You don't say how much Meth you are on? I was on the max dose of 25mg weekly and had got down to 2.5mg of Pred daily but after a gigantic GCA flare Meth just stopped working - I could feel the difference and I knew it wasn't doing anything for me.
If you can bear it, as your next bloods are due soon, I'd wait and see what they say. You might find that things ease up as you go on but if that happens I'd guess you are on the borderline of inflammation control and would need to be very careful with the next reduction.
I find that meths has never done anything for pain. It allows me to move (it seems to help the 'stiffness' and muscle blocking associated with pain) if I am willing to fight through the pain. If I can do that, I do feel a bit better, as movement always helps. I am on a very low dose of 12.5 and like you have to come off depo medrone (I'm down to 80mg to last two/three months). The Rheumy wants me to increase the meths, as, again like you, I'm in pain on the most recent reduction in steroid. BUT meths gives me unpleasant side-effects and I am reluctant on the basis that it does nothing for actual pain either. I am to see the Rheumy in early October and I think this will be a conversation we have to have, so will report if I get anything useful.
But, do you have a flare-up?? I wouldn't be so sure, based on my experience (but that is only personal experience, not clinical opinion), I think that meths does a different job to pred; but perhaps clinicians think that meths is better as it doesn't damage bones as much as pred does and that the meths does enough - though I note with interest that a side effect of meths can be softening of bones!! And I am noticing that my gums are not as strong and my teeth are wobbling more than they used to - but is that meths or pred??
It may be the reduction of pred not matching the dose of meths - but this seems to be trial and error. The CRP measurement is rather crude and doesn't give the whole picture, but is an indication of where you are. I guess the only thing you can do is to discuss it (even if there is little change in the CRP count), if your Rheumy/GP is willing to do this with you, and see if anything can be changed.
Good luck! As to what you do while you wait (no clinician ever seems to help with how you live in pain....), I find the use of ice packs and magnesium baths soothe - plus trying to keep movement going. I swim and find that the support of water helps - if you can get into a bath and move your limbs in warm water that may help too. But you may have other 'tricks' to help yourself, so do try to use them - I find when pain really strikes my brain forgets the things I can do for myself!
Hope your day is OK........
Sounds to me like you are reducing Preds. too fast. You should not be suffering so much as the medication is to sooth the pain. I don't know about Meth. As I have never had it. I come down very very slowly and review each 1st of the month.
Methotextrate is a steroid sparing agent. It does not cure. Metho seems to work better with people who have also developed LORA (Late Onset Rheumatoid Arthritis). I refused to take Metho as I thought I had enough side effects to contend with taking pred without adding another drug which also came with side effects. I may had made a different decision if I had also had LORA. However any decision as to what to take is a very personal one.
ESR and CRP are guidelines and guidelines only. They just tell you something is going on, they are markers and can be raised when you have a cold, flu or some other infection. How you feel (ie medical symptoms) is important.
Slow reduction of pred, no more than 10% at a time is the current thinking of some medics.
Thank you for your responses. I am on 20mg of Meth. by the way.
Having taken it easy yesterday and today, I am feeling better and have decided not to reduce the pred. on Monday, but to leave it a bit longer. I also remembered that the last flare I had was around 10 mgs where I am now. Maybe this is a difficult stage for me and the Meth. is not helping me as much as I hoped it would.
I am intersted that you are taking both steroids and methotrexate? My Consultant would not agree to methotrexate -blood tests required each month to check liver functions. I started to slowly reduce my steroids, but with 3 weeks I was in such pain, had to up them to 10 again.
My consultant suggested it (quite forcefully!) because I had a bad flare at 9mgs and had to go back up to my starting dose of 15. It takes 3 months to start working and, initially, my esr and crp were down at that point and I have reduced to 10mgs but have been feeling bad on 10 again but taking it easy and trying to stop a flare by staying on 10 longer. This month my esr and crp were up again so I don't know if the Meth. is actually working. Who knows about most of this!!