Glad you’re feeling a bit better!
Yes I’m a big fluid drinker always have a pint glass full of iced water or squash with me during the day which gets refilled very regularly and I upped even that in preparation for the mxt so I doubt it’s anything to do with not drinking enough water.
I also looked up the folic acid thing and I doubt I fit that either as in I wasn’t a failure to thrive baby at all and I’ve not had any blood tests tell me I’ve got those issues since. So I think I do normally process folic acid since I take B vitamins anyway and have done for years and I doubt the added 5mg per day now is making any difference. So I think I process the synthetic stuff just fine as well as folate generally too.
One thing occured to me last night though. I developed very severe asthma aged 18 months old which lasted that severely till I was around 7 or 8 years of age. And I remember my mother telling me I had odd reactions to relatively normal drugs then. There was one story she used to tell me - I had got extremely agitated probably with an added chest infection which I suffered from far too regularly and she was told by the GP to give me a minor dose of junior disprin as it would calm me down and help. So she did and I went literally bonkers for around 5 hours, I was racing around as high as kite and extremely unmanagable. There were some other reactions to other drugs but I can’t remember which ones. She’s sadly dead now so I can’t ask her.
So maybe I’m just doing something similar again. Maybe mxt and me just won’t get along. I am feeling a lot better this morning although I could have continued to stay in bed. I must have slept around 10 hours last night in addition to my sleep on the sofa for most of yesterday afternoon. And I feel hung over this morning too though not as a result of alcohol. I’ve still got the headache as well. But defintely doing better.
Right now I’m just scared of taking mxt again but we’ll see how I feel after the break from it this Sunday.
Again thanks so much for just being around - that helped so much.
Thank you Darinfan.
You may just possibly remember from conversations last year. I am a 53 year old professional living in Essex, enjoyer of life and passionate about the job I do (the financial management/business turnaround side of accountancy). I also like a glass or two of wine.
The story is that last March I was diagnosed with PSA, following the emergence of a swollen finger, and explaining many years of low level aches and pains that come and go in fingers, toes and foot.
I think I preceded you slightly in the Living-with-PSA site tantrum club. In the short space of time a normal fully functioning, busy happy and medics-free professional existence was threatened with the descent into to the world of hospitals and doctors, and the life damaging side effects of methotrexate.
After the best part of three very difficult months, and also just about a year ago to the day, I exited the tantrums club and joined the methotrexate refusers club.
Assessing risks and evidence is part of my daily work life, and horribly difficult when applied to the inadequate information available about PSA and the efficacy of its treatments.
My decision (and I am not recommending it to you or to anyone else), was that I was not prepared to trade the (to me) near certainty of major disruption to my current life, in return for the (to me) uncertain future benefits of taking methotrexate.
It seemed to me that the possible benefits of methotrexate are:
- To relieve pain
- To relive the other effects of the disease, especially fatigue
- To relieve inflammation and slow erosions
- To fail and get you onto something that actually works.
As far as I was concerned, and in the same order,
- Any pain was no more at irritation level and nothing that could not be dealt with by occasional Nurofen (the Naproxen that the doc gave me is still in the box);
- I have none of these;
- Well, they had found a few erosions which was a bit scary. The radiologist was prepared to say no more than that they were “consistent” with PSA, they weren’t in the digits that were swollen and hey, I was 52, how long had they been there? And above all, some learned sources were saying that Methotrexate does not stop erosions from PSA any way;
- And this one – I was simply not playing the game.
One year on from methotrexate independence day, I am lucky that things are much the same, although the feet have played up on occasions, and I guess I have gone through a similar sort of catharsis that you did before going back onto MTX (having only recently returned to the site, I have been reading your threads with great interest and empathy as they are so relevant to me, albeit I am lucky that my symptoms are less than yours.).
My plan, following independence day, was to look after myself much better, through better diet, more exercise and above all stress reduction (a mindfulness course helped a lot). That has worked quite well.
This catharsis has led me to be able to think in a calmer way how I would need to approach methotrexate if it is needed. To stand a of chance of getting through the early stages I think I would need to do the following;
I’d need to have come to complete belief that it was in own best interest. That would need to be my own belief and conclusion, not resulting from pressure from medics and others. If I decide it myself and believe it myself, that will carry me through the earlier difficult days better, and also the sacrifices. Otherwise I will just resent and give up.
I’d start it at a time of year that suits me (not summer which is gold dust to me, and not deep winter when I get SAD)
I’d set myself a “no give up” target, eight weeks or whatever. I am obstinate and avoid failure doggedly, so this would give me some self-motivation to carry it through
I’d make personal and work arrangements so that if I am incapacitated it will not be a huge crisis, just like if I was having a major operation. (Work will be the most difficult for me, I love work, the lap top goes on holiday and I was a nightmare last December trying to work through flu)
I’d get a counsellor alongside me. I used an excellent counsellor during the dark days of last year and it was massively beneficial; they help you keep perspective and to keep hold of the fact that it is ok for things to be difficult.
I don’t know, Poo, if any of that helps or not, and I am sorry it is rather long. We are both essentially “pre meds”, and certainly what you have been writing has seemed very real to me.
Maybe regular monitoring of the erosions is the real answer. I am not sure if they will do that.
Hey Ian! Nice to hear from you again, and to learn that you aren’t doing too badly. Sounds like you’ve thought this through carefully, and made your choice, and I’m glad for you that you’ve been able to get to that point.
In your carefully-considered case, I think they would do monitoring of your joints (as opposed to just the known erosions) and I would be asking the rheumatologist to set that up. It’s fairly standard procedure, I think: I’m diagnosed, and on medication to control the disease, and I’m sent for a complete set of x-rays to check every joint in my body every two years.
Thanks for dropping by! Don’t take off on us again for so long, OK?
Here’s a thread that we tried last year. I think it made for interesting reading. Do you think we should do another for, say, MTX?
Hi again Ian. Yes I do remember you, very well indeed. What a truly useful and thoughtful post too. Thank you. Our present situations are ‘achingly’ similar.
You though seem more ‘together’ on it than me. I started out quite together this time around back in April when I was told I now have three joints eroding when none were last year. And I’m now RF positive when I wasn’t last year. On that basis I thought well it’s time to get on to this ‘merry go round’ of medications as obviously I have to be on something to stop its progression. I was reassured injectable mxt would be better too, especially on side effects.
Sadly second week in those side effects hit me hard and wiped me out from Monday to Friday inclusive, given I took it on a Sunday. And now I’m descending back into ‘tantrum’ mode and trying very hard not to.
But your post has given me lots of food for thought. I had a counsellor for other stuff before being diagnosed and had just stopped it after around 20 months just before I got diagnosed. That was a coincidence. And I’ve resisted going back since because I was sort of ‘done’ with it as a process. I do consider mindfullness to be essential though although oddly that’s helping encourage the ‘tantrum’ mode presently. So obviously I’m not getting that right either.
So I am sort of ‘flailing’ around presently. The other DMARDS hold no interest for me. Sulfalazine due to the probability of vomiting and Lefunomide due to the ‘no alcohol’ rule. And more to the point there’s too talk of either doing anything useful too. Neither of those make daily life worthwhile in my view. Pushing through on mxt side effects now seems fairly insurmountable given last week’s events. I am so disappointed it did that to me. And obviously taking it again now feels utterly wrong.
I am waiting to talk with the rheumatology team to see where we go from here. I will let you know the end decision.
And again huge thanks for responding.
Just so you know . . . . MTX and leflunomide both have a no alcohol rule. But many people can have the occasional drink with no problem. Be honest with your doctor. If you have 2 drinks every day, then it may not be a match. But occasional alcohol is likely fine. I have one to three drinks a week, with no problem, and I’m on leflunomide for maybe 4 years now.
Thanks Stoney. In the UK mxt doesn’t have a no alcohol rule just a much reduced alcohol rule. I was told have at least three days in a row alcohol free and then only have one or two units per day. And under no circumstances ‘binge drink’ as in say ‘to hell with it and end up drinking a whole bottle of wine’.
Leflunomide certainly does have an absolute no alcohol rule in the UK - it appears utterly verboten. But obviously you do find with the occasional glass on it.
Isn’t odd that that mxt has these different rules depending on where you are? I find that scientifically suspect. Given it’s been around so long you’d think they’d agree which was actually correct. So you have lots of people on mxt in the UK carefully monitoring their alcohol intake and lots of people in the USA not drinking alcohol at all. It doesn’t appear either that the UK has a higher incidence rate of liver issues.
And I have been brutally honest with my doctor. I know it seems like I ‘fuss’ the alcohol issue. Half of the time I’m now wondering how much of an issue alcohol really is. It’s not particularly a place I want to go right now psychologically speaking either.
What I want is to get on with the meds with as little disruption to my normal lifestyle as possible. That includes the effects of side effects and that also includes just my normal day to day stuff. Like not worrying if after walking the dog in the evening that we shouldn’t stop off at the pub and have a pint and watch the sun go down. Like not worrying that my local store is presently stocking rather gorgeous rose wine and that it’s just plain pleasurable and such a treat to drink some of it too.
I’m not in a place where my PsA is so bad that I’d do anything at all to get it more manageable. What instead seems to be happening is that everything recommended to treat requires me to change my lifestyle considerable or put up with truly dreadful side effects like I did last week, which frankly isn’t making too much sense to me presently. It feels irrational and it feels like ‘overkill’ for little good reason.
I seem rather indulgently to have two threads going at the same time, which is no doubt boring for the rest of you. I am sorry. Anyway the verdict is in and it’s no more mxt, but sulfalazine instead. My thoughts of that are on the thread ‘the day is arriving’. Basically I simply don’t have a choice do I?
@Poo_therapy I wish you were boring!! I truly hope that all of your next posts are incredibly boring and your constantly bragging about how your not having any side effects from sulfasalazine!
Good luck with the sulfasalazine! At least you now know your doctor won’t let you suffer for longer then absolutely necessary!
That made me laugh out loud Cynthia - thank you. I actually wish I was boring too! I’m afraid if it turns out that it’s my head facing my toilet, instead of my bum, I won’t let me suffer at all!
And if it’s the case I don’t suffer any side effects, I’m afraid you certainly will have to all brace yourselves for an enormous amount of bragging, which will inevitably be incredibly boring too.
Dear god, how much more of this? Me whinging and wailing and feeling just awful most of all.
What did Mrs Doubtfire say? ‘Brace yourself, Ettie, brace yourself’. It will be probably be a week or so till I get set with the script etc. So I shall enjoy this time - of that have absolutely no doubt.
If it makes you feel any better, I had absolutely no gastric side effects from sulfasalazine - although your wee will become fluorescent. You might want to change your name to wee_therapy!
Hi Poo, they tried to get me on Sulfa last year because of the drink thing. Someone on here kindly set up a thread called “Sulfasalazine in 25 words” on which people were asked to write their experiences, and many did. I don’t know if you have seen it.
I discounted sulfa as it clearly does not work very often, and I found the whole orange wee thing repulsive - funny how we all have different fears. I took the view that if I was going to have all the hassle of taking drugs I might as well take the most effective option, and I had a booze holiday to prove that I could do it. (And which proved that I absolutely did not want to do it!).
The thing with phobias is that only the person who has the phobia knows what it is actually like. I have an acute dental phobia, which I have now got under control largely by finding a female dentist who I trust. It ended up once with me bolting from the dentists chair and running along the main road outside with the nurse and my now ex-wife running behind me, and me hiding behind Tesco’s to escape being dragged back in. Every time someone says to me “I don’t like going to the dentists either” I say to myself “you just don’t get this, you really do not understand”. I guess it is like that for you with vomit. I don’t like it either - who does - but that is where it stops.
Anyway it sounds like you are on a dream ticket, fail two quickly and move on, so well done.
Good to know Darin:relaxed:fan! Think I’ll manage the wee thing just fine. Don’t you like my name then?
Yes I’ve read that thread and probably have similar thoughts about the drug as you do. But there’s always a but isn’t there? First I might not throw up or worse still dry heave and secondly that might just get me to finding out if it does work or do anything positive beside give me flourescent wee. As a man I guess you get to look at your wee in a different more intense way than us females do. Good god am I really having this conversation??? It’s good to start the morning off smiling isn’t it?
And yes you certainly do ‘get’ phobias. Your description of your dental one just nails it. I’m of the mind presently that vomiting et al won’t kill me. I won’t think that at all if it happens (I descend into something approaching hell when I vomit) but if then if it does happen - that’s the end of it as far as I’m concerned. The last one of course is leflunimide (spelling?) which means absolutely no alcohol and I think if I get to the stage that that’s offered I might just be in with a chance to actually just say ‘no thank’ to that one. I simply have no wish to spend any time at all simply not permitted to drink any alcohol (a week or two is fine but it’s not how I want to live my life on a permanent basis) and I’ve no head space presently to think about it either. There is a limit on what should be expected one can cope with at any given time. I’m fast reaching mine.
The bottom line is though that I have to get on some medication sadly that does some good so I’m determined to plod on presently. And I truly have landed up with one of the best doctors for this now so I must utilise this opportunity wholeheartedly.
Great to hear you are mobbing onward.
Just a quick note on the MTX and alcohol thing, in case anyone else is following. In terms of the science, I think it is a bit like pregnancy. Because theoretically MTX and alcohol have the potential to cause liver damage in a similar way, then nobody can actually tell you how much alcohol is safe to have with MTX, because it would be ethically irresponsible (and practically very difficult) to run a gold standard double-blinded, placebo controlled study where people both drink alcohol and take MTX.
On the other hand, there is a retrospective study floating around out there that concluded that for people with Psoriasis, drinking up to 14 (Australian) standard drinks of alcohol per week (self-reported) in conjunction with low-dose MTX showed no more statistically significant liver damage on biopsy than MTX alone (though it should be noted there was damage).
My Rheumy, knowing I’m a researcher, pointed me to the study and the half-life of MTX, rather than giving me hard and fast rules, and I ended up with a somewhat similar rule of thumb for myself -no alcohol for 24 hours before the dose and 48 hours later, and no “to hell with it” sessions. I spoke to my Rheumy about it, and he agreed that it sounded reasonable given the lack of information. It has to be said though, that like pregnancy, without information, then it is quite valid to say that the safest approach is not to drink at all.
Hi Jen, I am sure your are absolutely right about the research. I also think there are large cultural differences in attitude towards alcohol between the US and Europe (I know you are not US). These may well impact on the medical recommendations and certainly change the impact of no alcohol rules. I have always considered the US pretty anti alcohol and that does make it easier for those who are used to this.
I guess that I am not atypical of people here in the UK in that I have a good knowledge of wines, and of the fine ales and ciders that we produce in this country. It is a bit of a hobby. I don’t drink buckets of lager, don’t get me wrong, I am no alcoholic, but having a couple of drinks in the pub with colleagues after work, and then catching the train home, or taking the train to a grand dinner in London, or walking to the local pub, or getting a taxi to our local Curry House on a Friday evening with my partner, or hopping on the bus into town and going to a restaurant, are part of sociable and enjoyable life here in a way that they may well not be in much of the US and elsewhere.
The other problem I have is that I simply do not do fizzy drinks, I can’t stand sweet, be it sugar loaded or sweetener loaded. So it is a complete social occasion killer for me to be out with people who are drinking and be faced with the choice of a cup of tea or a glass of water.
By comparison I visited a really good friend who married a Dallas lady and lives there. Part of the city is prohibition. They rarely drink. Of course there are no pubs, most eating establishments are at out of town locations where you have to drive as there is little public transport, there is no culture of going to the city centre for a night out and oh, it is excruciatingly hot and you just want iced tea. If they got PSA and were asked to take MTX, it would be no problem at all from the alcohol point of view.
I just wrote this really because the same rules have different impacts on people in different cultures and it is good to understand that.
Funny how you say that… in American series and movies everyone always drinks like it’s normal to have a drink to celebrate or after a bad day… I’m not sure about the English shows but the Dutch once have that much less… there is alcohol but it’s less of a solution to all your problems… but 80% of what we watch is American, 10% English, 5% Dutch and then the other languages… so maybe it seems like more since I watch more American shows…
Yes, Poo_therapy, you aren’t boring AT ALL–all of you good writers, and here I am! hahahahaha–I get embarrassed most of the time because I’m so boring, but y’all put up with it cuz you LOVE me, right???
I truly think I’m better in person * HEHE * !!! J/K, but my grandkids think so, anyway!!!
I’m abnormal in that I don’t drink at all…and I’m American…a real oddball all the way around. Having a pretty good day today, as you can probably tell!!