I get that doctors are worried about our bones and othe side effects of Prednisone. But if steroids are keeping us well, why give cell killing and cancer causing drugs. We are already at higher risk of getting leukemia or lymphoma from PMR/GCA and they want to increase that risk even further?
Azanthopine and Methotrexate kill our cells and increase the risk of a blood cancer. Am I misjudging this practice.?? Am I missing something?
I have had a hematologist and a second rheumatologist tell me that, in their opinions, these cytotoxic drugs are not appropriate in my case at least; 18 months into treatment and I am sicker than I was before treatment and had a serious visual incident causing permanent damage to my retina logically from GCA while tapering.
Where is the proof that even "low dose" cytotoxic drugs are better for us than the dose of steroids at which we are comfortable?. Something doesn't seem right about this common approach by rheumatologists and general practitioners. Does anyone know?
I understand concern about the bones, but where is the risk/benefit analysis?
Taking away or reducing the drug that keeps us feeling well is like taking candy away from a baby. Bizarre.
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bluemoon70
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Hi bluemoon70. It's rather alarmist of you to post claims like this, especially without any scientific citations at all for people to follow up. What are you trying to say to members of the forum? What is your objective in this post? By the way, and this is a point to everyone, in Internet etiquette, using block capitals for text is generally regarded as "shouting".
I have just started methotrexate, 3 weeks in, and I did to some extent have the same horror of it as you. However we are all different and there are sometimes only least worst options. You have not yet been offered it I understand. I have only just been offered it after 2.5 yrs on highish doses of steroids. However I have had a serious infection that put me in hospital, rapid and disabling cataracts, one eye now corrected, and now 2 vertebral fractures which I in no way saw coming as pred side effects. These in combination with the GCA PMR have completely altered my life. I think that one has to be guided by the specialists at some point and I am certain that my consultant knows the risks and what I might find on the internet! I do know people who take it for RA and find it great. So for me it is the least worst option, but I am only at the beginning.
Hopefully you won't need methotrexate, but for some of us pred was initially a miracle worker with a nasty sting in its tail!
These are horrible diseases, all the worse for not being that obvious to others, and any adverse information about the treatment just adds to it. I sometimes want to scream and shout at the world in general and have to tell myself sternly that the medics are doing what they can.
Let's look at the substance of this claim. There are three studies looking at links between methotrexate and malignancies. You can read about them here.
Note that the studies have been done on people with RA, not PMR or GCA. It is unknown whether it's the MTX that increases the risk - it could be the disease itself. In most kinds of cancer the increase in the risk is only about 10% compared with the general population. Age and other intervening variables may be factors here. What does it mean? So, an 84 year old woman with rheumatoid arthritis has a 10% greater risk of getting a certain type of cancer than a 54 year old man? Are we going to lose sleep over that?
Now, it's important as well to note that the research talks about increase or decrease in cancer risk (in some cases the risk of cancer goes down with MTX), and not about MTX causing cancer. Repeat after me .... "Correlation does not imply causation, correlation does not imply causation........"
The final point I would like to make is about pred. If doctors hated steroids so much and worried so much about prescribing steroids for PMR and GCA, why has it been 70 years before a new drug specifically for these illnesses was developed? Why has there been so little research generally until recently? Just saying.
As I understand it you are wondering why would we be prescribed drugs like methotrexate when steroids are working just fine to control our disease? I agree with you. Has your doctor been pushing you to try mtx or something? Sometimes the doctors want us off pred asap, not really giving us time to wean ourselves to a safe maintenance dose. Many of us refuse the extra medication, preferring to deal with the side effects of only the steroids, which are well understood and in most cases very manageable.
There is evidence that low dose pred, even taken long term, does very little damage to us, in most cases no more than natural aging!
If someone is doing just fine to reduce their pred to a physiological dose (8mg and below) within a few years then I agree that mtx is not called for. However, there are people who don't manage to get there or not reliably - and then there is a logic to try other drugs. There will be the odd patient who doesn't have PMR at all but an inflammatory arthritis with polymyalgic presentation - in which case mtx may well get them off pred and also prevent any long term joint damage. If it is going to work it will show within a few months. If it makes you ill, you can stop it from one weeks to the next.
I know a PMR person who was unable to reduce to a low dose, on mtx she got considerably lower - it wasn't apparent the mtx was doing much until she tried going without! Then it was decided to try leflunomide - within 8 months she was off pred altogether and is now working on reducing the leflunomide. She says she felt the leflunomide "kick in" and even on leflunomide felt better than she had for years.
There are roles for them - and they can make a major difference for some people. As I have said a few times recently, about 1 in 6 patients who are at first told it is PMR go on to have that diagnosis revised. A lot of underlying causes lead to PMR symptoms - and that is all they are, the symptoms of a different underlying disorder. When it is something else - pred isn't always the right choice.
I have been on both these drugs and to say i was ill is an understatement.I am down at 4mg pred so why was i even given them? Been on pred 4 years still got symptoms but coping ad best i can.I will never take anything like these drugs again they are horrendous.The nausea,vomiting the runs and the general feeling of being so ill,i could not cope with it again.I am 1 week off the Azanthopine as i was so unwell got rheumy Tuesday see wot he says.Had Methotrexate last year so ill with it.
But i know for sure that i will never take these kind of drugs again for my PMR
We are all different and i know some of you will take these drugs and be fine and i am happy for you,but in my case
"A cautionary note: "These lymphoma cases are rare among methotrexate takers," Kenney tells WebMD. "We want to emphasize that fewer than 1 in 1,000 patients per year who get methotrexate who have rheumatoid arthritis get EBV lymphoma. It's a very low-risk situation. We do not recommend that people stop taking methotrexate.""
The research suggests it is potentially a very rare problem for rheumatoid arthritis patients who also have Epstein-Barr virus - and since we have PMR and not RA it doesn't apply to us.
In the UK GPs cannot use methotrexate off their own bat - it is for specialist use only.
As for increased risk of lymphoma in PMR/GCA - please cite your references. This study
says quite categorically that "GCA patients are not at increased risk of first cancer after diagnosis."
What DOES happen is that there is in increase in diagnosis of cancers in the first year after diagnosis of PMR and GCA. That is probably for two reasons: one is that the patients are under increased medical supervision and so existing cancers are likely to be identified sooner. The other is that apparent PMR can itself be a symptom of various cancers which should be ruled out before choosing the diagnosis "PMR". Especially in patients who do not present or respond to moderate dose pred typically. That's why I keep banging on about "Are they SURE it is really PMR?"
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