Change of meds.
Posted , 8 users are following.
After over a year and constant badgering from me, I finally got an appointment with the rhumey Dr. I explained that I couldn't get below 10mg of pred before it got difficult to walk. 10mg just takes the edge off the pain. I can't remember the last time I felt completely pain free, is this the same for all of you ? )
Anyway, because I've been on pred for longer than the 'suggested 2 years ' (it will be 3 years oct), she has put me on Methotrexate 10mg in al once a week with folic acid to follow the next day.
I thought only pred was the only drug that got to the heart of ONE.
She has also made such a big deal if emphasising that I MUST take it the same time each week, no alcohol (I don't drink so no problem there), blood test every 2 weeks until further notice and that it could damage my liver, that I am more than a bit concerned.
Could anyone put my mind at rest please ?
0 likes, 13 replies
mary_49929 lyndsay250258
Posted
Methotrexate did me no favours.. i know everyone is different, so this is just what happened to me.. I was told it would be weeks before it worked, so I kept taking seven tablets every week.. at this time I was on 16 mgs of pres, dropping from 60mgs , started end Sept with GCA and then PMR. .Five months in, and if I slept more than an hour and a half, that was good!!. My hair started falling out and eyebrows disappeared, eyelashes stayed.. skin was breaking continually, to the stadge the soles of my feet bled continually....anxiety reared its ugly head....didn't like this at alll... three weeks ago I stopped taking it... down to ten now, and going one mg a month if I can.... lifre has become happy again.. I feel one hundred per cent better....I was blaming pred, but not, was I wrong.... sorry if this scares you, but that's just what happened to me, and it certainly didn't help me lessen steroids..... good luck with it.xx
lyndsay250258 mary_49929
Posted
Hi 2mary 49929. No it doesn't scare the more info I have the better. I've only taken 4 so far and have another Hosp appt next week. I will discuss my fears. Also, although I haven't been diagnosed with GCA with tests I have in the past been told that Its possible I could have it. I doubt Methotrexate would cover this.
Thank you for info, I ts been very helpful.
mary_49929 lyndsay250258
Posted
EileenH lyndsay250258
Posted
Methotrexate MAY (and I emphasise MAY) help you manage on a lower dose of pred as it changes the way the body processes pred and potentiates the effect. No guarantees though - I don't care what any rheumy says. Mary has told her story.
Whatever your rheumy thinks, 2 years for PMR is the exception and not the rule. A study by an Italian group showed that while using methotrexate got patients to a lower dose of pred, it did nothing to change the incidence of pred-related side effects and whether the patients were on it or not, one third of patients still required pred after 6 years.
I have been on steroids for 8 years. Three different sorts and for a lot of the time at above 10mg. It was well over 3 years before I managed to get below 10mg and in the meantime had been on prednisolone (almost no problems) and methyl prednisolone (horrible side effects). I was switched to a new form of prednisone - all the methylpred side effects disappeared, I lost all the weight I had gained, and have no problem at all. My bone density has barely changed over 7 years despite only ever having taken calcium and vit D supplements, nothing else. No raised blood sugar, no skin problems, cholesterol a bit high but no-one here cares.
The international guidelines suggest methotrexate MAY be used IN AGREEMENT WITH THE PATIENT - no guarantees. Some doctors will tell patients they will get off pred - not necessarily. It does not replace pred, it might make it work better. Or not. And it adds another potential layer of side effects. I have a friend who takes it, has the occasional glass of wine and is perfectly OK. She is sure it lets her manage with a lower dose of pred - but is still at 7mg.
It is your choice - my view it is probably worth trying if it doesn't make you feel ill. It might get your pred dose lower. But equally - so might patience and the Dead Slow reduction approach. And if methotrexate makes you feel ill - I can't see the point.
lyndsay250258 EileenH
Posted
Thank you EileenH.
My rhumey in London has told me that she expects me to stop taking Pred in Sept. Although taking Pred scares the living daylights out of me, Methotrexate scares me more. I've only taken 4 (one dose) so far.
Through this forum I am armed with info for reasons why I'm not going to take them. I wasn't happy about the change anyway. I'm not one to be pushed around, when it comes to my health. I wasn't aware that 3 years on Pred is a novice compared to many in here.
Thank you
EileenH lyndsay250258
Posted
Which September? 2017? She can "expect" all she likes - the boss in this situation is YOUR body and the PMR. And if you have any chance of having GCA - then methotrexate won't get you off pred that quickly. In fact, the chances of it getting you OFF pred altogether are small - unless it isn't PMR/GCA you have but an inflammatory arthritis.
Now if she were suggesting tocilizumab/Actemra I might be more believing of her claim you will off pred before Christmas. But it isn't an option for PMR and permission must be sought even for GCA.
mimi1950 lyndsay250258
Posted
I had been giving myself a weekly shot of 15mgs mtx for 14 weeks before I realized that it was causing worse side effects then the PMR without Prednisone.I was really ill for 4 or 5 days of the week.. I didn't realize it was the mtx because I couldn't imagine why they would prescribe it for PMR if the side effects were worse than the PMR itself. I guess as Eileen says, everyone has a different response to it. For me, it wasn't worth it, so far I've just skipped a week, but I'm tapering dead slowly , just started introducing 6 mgs , and keeping my fingers crossed.
Maybe at 10 mg of Methotrexate, you won't have bad side effects. They say it is anesthesia 6 to 12 weeks to kick in but the side effects, if they come, will come right away and, at least in my experience, won't get better with time.
I was labeled "steroid resistant" from the beginning but I think I was just confused about tapering, overdoing , etc.. At least you will be monitored with blood tests every two weeks...I was not offered anything like that and those side effects were brutal and very scarey. But good thing is, you can always go off of it and feel your normal PMR-self again.Like Eileen says, it is worth trying, I think if no major side effects, it may work to make the tapering easier.
lyndsay250258 mimi1950
Posted
Many thanks for your reply.
Grandpa_Pete lyndsay250258
Posted
How different we all are. When I was diagnosed with PMR I decided against using steroids and was prescribed 15mg of methotrexate with folic acid. It took several weeks to kick in before I started to respond. I had limited side effects - mainly nausea and tiredness but not often. Two and a half years on I have my life back and I'm off the drugs. My consultant is convinced I had PMR and has other patients for whom methotrexate has proved satisfactory. I know this conflicts with other views and research but I can only explain my own experience.
mimi1950 Grandpa_Pete
Posted
Grandpa_Pete mimi1950
Posted
The one issue that troubled me was that colds took weeks to clear up. Any infection should be quickly discussed with your GP because your immune system is impaired by MTX. So glad I'm off it now!
lyndsay250258 Grandpa_Pete
Posted
Hi Grandpa Pete.
Thank you for your reply. I've only taken 4 (one dose) so far. But a couple if strange things have happened in the last week, which may/may not be connected. Dizzy spells excessive thirst and hair loss. I may not have thought this was relevant . But I will mention it at my next appt.
Thank you for your reply
EileenH lyndsay250258
Posted
Hair loss is not uncommon with mtx I think. But I'd be surprised at it happening this quicly.