methaxatrate side effects
Posted , 6 users are following.
Hi all
I am feeling really disappointed right now. I have had supposedly PMR
since March 2016. Ihave come down to 7mg last 3 months cant seem to get below 7mg, and on methaxatrate for 6 months 25 mg.
My esr and cpk are still high have not come down. Now I have been diagnosed with fibrosis of the liver.
My question is this a result of the horrible methaxatrate? This drug has done nothing to improve my condition. Why has my rheummy insisted that I go on this drug. He now wants to take me off and wants to start bio treament which invloves some injection once a week.
I now have to see a liver specialist as concerned. Can this be reversed?
I don't know what to do anymore. He still does not believe its PMR but cant really diagnose anything else after extensive tests upon tests.
I feel like coming off everythjng and see what happens. ..
would love some feedback
0 likes, 28 replies
EileenH mirella60121
Posted
You should have been monitored for liver problems BEFORE starting on the methotrexate and while taking it - so it would seem a reasonable comment to say there was nothing there before. Or were you not checked out thoroughly?
Your rheumy used it because some believe that it helps the body manage on a lower dose of pred - which they feel reduces the longer term side effects. An Italian paper showed that while it reduces the total dose it doesn't in fact reduce the rate of side effects. This paper also showed that about 1/3 of patients will still require pred after 6 years - despite mtx. Since he seems unconvinced you have PMR (and to be honest, the persistently high ESR/CRP may suggest that) he has also tried you with the standard first-line approach for inflammatory arthritis which is mtx.
I am on 7mg - after nearly 8 years. I have been down to below 5mg but had a flare last year and was back to 15mg. No doctors here have ever suggested methotrexate despite the length of time - and I wouldn't take it as there is no real evidence it reduces the side effects of pred despite reducing the dose with which you can manage the symptoms. I think it just adds another layer of side effects.
As Flip says, you can't do the "I wish I hadn't..." path, you are where you are.
However, I think your rheumy is being unrealistic about management with pred. To be at 7mg after a year is not bad at all - and the expectation is that treatment for PMR will last at least 2 years, and for 75% of patients it will be anything up to 4-6 years. 7mg is the dose that is approximately the same amount of corticosteroid as your body will produce naturally - and while you are taking it, your body doesn't make more. It is what is called a "physiological dose" and most doctors don't worry too much about it. It is also a dose that poses many people problems when they try to get below it - you have to go VERY slowly because not only are you looking for the dose that manages your PMR symptoms, your body also has to start to produce cortisol again.
That said - is the biologic tocilizumab/Actemra? It has been in use for RA for several years and has recently completed Phase 3 clinical for GCA. There are anecdotal papers (about single cases and small scale pilot studies) in PMR where it looks promising. As Flip has said, it has worked well for her. But at present it isn't licensed for GCA/PMR so wouldn't normally be covered by health insurance/funding for those diagnoses and I know there are rheumies (certainly in the US) who are changing the diagnosis to be able to use it. Even so, the patients has to fail (not improve with) first line drugs - such as methotrexate.
Your GP may be over-reacting, tcz is in use in RA. The blurb about tocilizumab says it is not associated with the side effects of pred although it doesn't say what OTHER side effects it is linked to. And there are not yet long term studies for those side effects, it hasn't been in use for more than 15 years including the clinical trials. But, if youdidn't use new drugs you would never improve management of chronic illness and the biologics have saved lives in RA, there is no getting away from that.
If it were me I would want a big discussion with the rheumy, some justification for his management approaches and to be convinced he knows what he's doing. In the absence of that - is there any chance of a second opinion?
mirella60121 EileenH
Posted
mirella60121
Posted
EileenH mirella60121
Posted
It is speculation of course, but one cause of liver fibrosis is autoimmune liver disease - and that might possibly be the cause of your persistently elevated ESR and CRP. Was your PMR fairly typical? Was it muscle stiffness/pain rather than joint pain? Otherwise the symptoms are pretty typical of all autoimmune disease!
One drug used to manage liver fibrosis appears to be pred - so you may not have to worry about the PMR! Of course it says they don't like using it because of the long term toxicity - but when you have PMR you don't worry about that so much...
Good luck - and do tell us how you get on.
mirella60121 EileenH
Posted
My appointment for liver specialist isnt until may..cant fit me in earlier. Not sure what to do in terms of do i up the ateroid treatment now that i ceased the methotrexate or do i wait to see how it affects me. So confused right now. I am feeling really down and cant seem to get myself out of this. I am trying to stay strong but feeling like crap...
EileenH mirella60121
Posted
I'm not saying it is - I'm suggesting it must be considered and the evidence you have so far makes it reasonable that it is investigated. If you have one autoimmune disorder you are at a higher risk of developing another and perhaps that is what has happened. Many PMR patients do have raised liver enzymes right at the start - maybe that is a sign that mild liver involvement is common but something that hasn't been noticed because they haven't looked for it. There are many ifs and buts that can't be answered at present, maybe never will be answered.
The high ESR/CRP readings are a SIGN of the damage/inflammation. The haven't CAUSED anything. They are due to the production of proteins by the liver in response to the inflammation somewhere in the body. And they are not the signs that the liver is damaged. The liver is an amazing organ - when you remove the potential damaging substance, it usually regenerates well.
There is little evidence that WEEKLY, low dose mtx is going to cause significant liver damage in the short time you have been on it. It is possible over several years of lower dose use, it is possible when it is being used daily or more often than weekly in high doses for cancer. This is a good discussion of the risks:
Psoriatic arthritis, methotrexate and the liver—are rheumatologists putting their patients at risk? K. Lindsay, A. Gough
Autoimmune disorders are very complex - the muscle symptoms may appear in many different autoimmune illnesses and often there are what are called "crossovers" where a patient has signs and symptoms of more than one "label". The management for autoimmune hepatitis uses pred - but at a higher dose than you would use for PMR. The starting dose you were on was perhaps enough for early stage inflammation - and now you are at a lower dose it isn't enough or the inflammation has increased. It can be quite a time before all the signs and symptoms appear, often liver disease is only found by accident at a late stage.
When you were put on pred it is surprising you weren't put onto either ranitidine/Zantac or a PPI to manage potential reflux and if you have symptoms I'd suggest you not only tell the GP but get some for yourself from the pharmacy if he doesn't offer any.
For the moment I would see how it pans out having stopped the mtx - it may be it wasn't doing anything and you would have been able to reduce the dose anyway. If you continue to feel the muscle pain then trying a higher dose again isn't likely to do much harm - but you do have to be able to keep the prescriptions up, you must not stop the pred suddenly, so you will have to get at least your GP onside until you see the liver specialist to be sure you have the supply.
Of course you are feeling crap - you have been dx'd for a long while with a chronic illness and just as you were coming to terms with that, the rug has been pulled out from under your feet and you are told you have something else. Some thing that potentially COULD be due to the treatment the doctor chose for the first problem.- which does bring an element of mistrust in him. It is possibly something to discuss with your GP - I don't know much about your system but maybe there is some counselling you can access to help you process this new unknown situation. Not sure more pills are the answer though.
mirella60121 EileenH
Posted