Hi. I was wondering if anyone could help.... i went to have another blood test aftwr being on 12.5mg prendisone for 4 months and 10mg methaxatrate for only 3 doses. My ESR levels have gone even higher than when i was diagnosed and the cpr is higher. Also my liver enzymes are high. My GP now thinks possibly something else going on. I was extremely sick when i did the blood test possibly a virus and have been better since. She now has me concerned . Should i be?
ESR and CRP measure any infection in your body, so if you are unwell for whatever reason, it will show in those bloodtests, they are not specific to PMR or GCA.
As for liver enzymes, methotrexate affects the liver, that's one of the reasons why you have regular bloodtests when on methotrexate. This should definitely be rechecked to make sure you are within safe levels.
Thanks for that . I thought so i think my GP is over cautious as wanting now to look for tumour markera. I was teyung to explain to her i was very sick when doing the blood tests but better now. As for liver can steroids raise the enzyme levels as well as only new to methotrexate
From what you've told us it sounds like your sickness was the cause of the elevated inflammatory markers. I don't think prednisone usually has any adverse effect on the liver, as Suzanne says it's much more likely to be the mtx, so that's a more likely thing your doctor should be following up right now. For some reason they think mtx is benign compared with pred, but from what I've been reading here a lot of patients do not react well to it, although others find it really helpful. We're all different!
Thanks for your feedback. I will follow up with another blood test to see what happens
It's almost certainly the MTX that has your liver enzymes raised. I've been on MTX for 6 months and mine went up after a couple of months and stayed up. For some reason the Rhuemy is more concerned about me lowing pred that what the MTX is doing to my liver.
If you were sick there's no doubt that your inflammation levels would be raised above what they would be for 'just' PMR.
You might want to ask for a retest.
Hi, I am not sure where you are from, but if you live in an area where Lyme disease occurs it may be worth ruling that out?
Deborah i live in sydney Australia. We dont have lyme disease here that i know of anyway. I had a had a retest so will wait and see how the inflammation esr markers are this time.
Thanks for your help though
Hi from Canberra!
Hello, hey can i ask you my stiffness this week has progressed.
Some days i struggle. I have been on 12.5mg for 3 months now i thougt the stiffness would cease by now.
Hi there try not to worry to much after my first blood test it came back with lots of raised levels including red platelets and my gp said she would check again in a month in case I had myeloma I was absolutely terrified for a month although I kept telling myself that it's the body's way of fighting all the inflammation from the PMR but logic goes out of the window I'm afraid I had another test two weeks ago and all the levels were down slightly got to have another one in two weeks so try not to keep thinking about it although I no that's very hard
Hope your results continue to improve. It's the not knowing which is hard. Good that the doctor is checking everything thoroughly, but I'm sure it's just the body doing it's overactive thing in PMR! 💕
Did you ever feel really well on pred? If so, you may need to go back up a little until you are sure the inflammation is under control. I have heard that the standard is to feel at least 70% of the PMR symptoms are gone. If they aren't you either need a higher dose, or there is something else going on besides the PMR. In my case pred at 15 mg took away all my pains, including some caused by arthritis in my spine. Since tapering there is a slight niggle of PMR in my upper thighs, and I do feel the stiffness of arthritis in my hands and feet, as well as unexplained but transitory pains in other body parts, notable my shins. But in general I would say I have 90% relief of PMR symptoms. If you are feeling you are not at least 70% better after all these months, testing the waters by slightly raising your dose might help. I think there is a standard percentage which is suggested. Usually people are advised to go back to where they last felt well, but if you've been feeling the same for three months, I don't know.... someone will....
The pred never really got rid of my stiffness - it really only relieved the pain side of PMR. That said, as I've gotten better over the past few month the stiffness is all but gone. I attribute that to giving up all grains and dairy (basically paleo).
Thanks for that info. It helps. I guess i thiught the steroids would be the answer to all this madness. I just wish like we all do to have my previous life back. Hate that every day i wake up i hope i am better than the previous day. I am going back to the rheummy on monday for new blood results. See what happens
So what else could be going on like other auto immune condition or something else. I am going to try go back to 15mg see if its better
How long before you reduced though. Is 3 4 months long time to be on 12.5mg? I am going to try and diet as i really feel thats half the problem. Have put on a lot of weight since on steroids. That hasnt helped i guess. Is there a link to a specific diet willing to try anything
I will try not to worry but ita frustrating when you go from anpwrosn who never sat down to work work work to now struggle. Hate it. My rheummy annoys me as he says way to young for this condition. So what else could it be i dont know. . They ruled out everything else. This was the only condition to fit the symptons. Wait and see the next vlood test results.
I'm really sorry Mirella, but there's not a whole lot of good news I can give you. If you have PMR then you are in it for the long haul. It's terribly hard to accept, but you will, given time. We have all gone through this process, and (mostly) come to terms with it.
So...you need to know it's not a case of 'is 3-4 months long enough at at certain dose?'... you need to take enough prednisone to reduce the inflammation you have - it's the inflammation that will kill you in the long term, not PMR itself. It effects ALL of your body.
While you still have the inflammation you need to take pred. And you need to take enough to reduce the inflammation. It may be 20mg or it may be 2mg... only YOU will know how much you need. If you are not taking enough the pain will return - you'll certainly know.
Diet almost certainly helped in my case - I really only started to improve when I went grain and dairy free (paleo - although I sneak in the odd legume).
I put on a HUGE amount of weight in the first year on pred - mostly because I gave up and comfort ate.... which made things much, much worse. What a catch-22! You could try looking up the auto immune protocol on Google.
It's also common to have more than one thing wrong going on - I got diagnosed with Fibromyalgia and myofacial pain syndrome a year after my PMR diagnosis - I'm just grateful that so far I have avoided another autoimmune disease - your odds of getting a secondary or tertiary condition is greatly increased once the first one manifests.
Good lick and keep us informed