National Rheumatoid Arthritis Society

Heavens above what next?!

Hi All. Well I went up to 17.5 mgs of MTX on Tuesday night and yesterday I woke with the usual crushing feeling after 2 days of the usual exhaustion. Only this time it was a physical sensation in my chest all day - really tight and achy right between my breasts. And today it's lifted but I'm a little breathless -but then I've been busy and had friends to lunch and spent the afternoon rehearsing the very difficult piece of music I'm about to go down south to sing with these friends -so it could just be that.

A while ago I posted about pimples/ blemishes on my face. Well they've got a bit out of hand this week and hubby keeps on at me about them as they are really raised and red and quite itchy. And now today they seem to have joined forces with each other and become a hot rash on my cheeks. I always used to get allergic rashes in the bad old eczema days but haven't had anything like this since the Sulpha episode last June. Not sure what to take - my GP gave me some strong anti-histamines to take after the Sulpha but I don't know if I can use them now I'm on the MTX. Should I phone NHS 24 as it's the weekend or shall I just hope it goes away do people think? Apart from anything else I'm really looking forward to this trip away for a few days and don't want it spoiled by one of my allergic reactions - I look horrid! I will phone my GP if it's still bad on Monday of course but can anyone tell me if they've had anything similar with MTX?

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23 replies

    AliceDianaB
    AliceDianaB

    If it were me, I would phone the 24 hour NHS, that's what they are there for... They want to help and I always found them to be very supportive and kind.

    I had the 'usual crushing feeling' for 6 out of 7 days with 15mg MTX, could not think, and the confusion which came with it was unbearable and I ended up having an accident (minor) with my car.

    I'm off MTX, and soon to start a different med. My medical record says 'cognitive impairment', no mention of confusion or accidents... Go figure...

    Here in the USA, we have to try MTX before insurance will pay for anything else, as the anything else (biologics) are very costly - MTX costs pennies, Embrel costs $1500 a month... Possibly, probably no different, the cost, to the NHS, and with managed care being the buzz word of the day, what do I know? :-( as to what is driving the decisions to use different medications in different cases... Nothing as I am not a doctor and not an administrator involved in the cost control part of the system...

    TildaT
    TildaT

    I'm a bit confused Alice - are you living in the States but actually from the UK? Otherwise how have you experienced NHS 24 I wonder? I think I will phone NHS 24 because I know from experience that once I start to go itchy and hot it very rarely goes away by itself. I will phone them in a moment thanks for pushing me to do something sensible! TTx

    sylvi
    sylvi

    I agree with alice ring nhs direct,the reason being mtx made me breathless as well and i'm off now until at least after my operation. I also had light sensitivity which became quite bad. Its only now my breathing is settling down a bit. I know i'm very overweight and that doesn't help. Whats the date on your antihistamines if they are still in date after you nhave spoken to nhs take them. Tell them that is what you have at hand,they will probally tell you that you can take them.
    Sylvi. xx

    TildaT
    TildaT

    Thanks Sylvi. I phoned NHS 24 and told them about the spots and itchy slightly swollen face and the chest tightness and pain yesterday and the MTX plus name of the antihistamines I've got and they say an advisor will phone me back within a few hours to tell me if I can take these drugs or not. They are both from June 2011 when I got that awful rash after the sulpha. This is only on my face and I've got these bright red spots like acne!? TTx

    Gina_K
    Gina_K

    Hi Tilda,

    It sounds like a bit of a reaction, you may have to stop mtx. How will you feel about that? I am on 17.5 mg tab form mtx and have only fatigue for about 24 hours after dose. These reactions you ae experiencing are not really acceptable. Have to say I am not having the best of days pain wise, very achy, think might be heavy rain coming.##

    Let me know what helpline says. I am guessing they will advise contacting Rheumy asap, you can't take back the Tues dose now. Tightness in the chest may be side effect, but could it be anxiety?? I get that sometimes when I am stressed or anxious, it may not be a consious worry, it may be anxiety about taking these meds. I wonder can they check your bloods? would anything show?.

    I hope it turns out ok.

    Take care & let us know, Gina.

    TildaT
    TildaT

    Yes Gina that's what I thought about the chest tightness too - especially as it's gone away today. The breathlessness is very marginal too so I don't think worth mentioning but itchy spots are a different story as they are just what I've had since starting the MTX but magnified now by raised dose I'm assuming. So fed up for my son now that's the bloody limit!

    TildaT
    TildaT

    A doctor phoned and told me I could take my antihistamines with the MTX and come into the hospital A&E if it gets worse tomorrow. My chin has now gone bright red and hot?! Also heard bad news an hour ago that son who was given a job down in Edinburgh has just been told they don't want any extra staff after all - thinks it was all just a wheeze to get extra cover over the April holidays. He can't do anything as it's a massive pub chain and he did at least get paid for the 4 shifts he has done but I feel devastated for him as he has crashed back down to earth now and thinks he'll never get a job poor lad. Ah well life's not going that rosily in Tilda-land it seems. TTx

    oldtimer
    oldtimer

    Have you had a steroid injection as well? Sometimes steroids can give you an rash like acne on your face - just something to consider.

    TildaT
    TildaT

    No steroids recently no. The antihistamine has taken the heat out of it at least and I'm going to take a daytime tablet too. Big red spots still there though but will hopefully be covered up with makeup for my choir trip away - I look like they've been stuck on me as some sort of hideous panto character!

    Had a terrible night - still worrying about eldest down in Edinburgh on his own after such bad news - will be relieved when his girlfriend arrives with him this afternoon. Then middle son played a gig at an 18th and didn't get home until 4.35 am having not answered his mobile for 3 hours previously. I think he might have walked home and he was dead rude and surly. He has maths coaching today and the man just does it as a favour for free it's not on to be yawning and tired - this boy has his big Higher exams starting in 3 weeks time sound school goes back tomorrow so after quarrelling all through the night his dad and I only got to sleep at about 5.30am! Every joint aching this morning but am blaming the son! TTx

    allanah
    allanah

    hee hee my kids are angels at the moment!!! NOT Axx

    allanah
    allanah

    Maybe you are picking up on the kids hormones lol
    Not really down playing it Tilda!! These severe rashes are so awful, hope you get sorted soon, thinking of you Axx

    TildaT
    TildaT

    Lordy I've woken with a pink hot puffy face and lips all swollen like I've had Botox?!

    Am going to have to phone the GP surgery and get advice about whether to take tomorrow's MTX or not - think I may need a week off somehow! That way at least I can have a drink or two while I'm away with choir. I've taken the antihistamines night and day and used some hydrocortisone cream to no avail. Heck yes I do feel like these boys have passed on some of their acne - but it's not just acne any more - been here before and it looks like I'm going to be singing like a red hot beacon on Wednesday night. Think I may need a steroid shot for this lot!
    TT x

    Jetblack
    Jetblack

    Hi TT,
    I know exactly what you mean because the same thing happened to me, raised spots, a burning itchy rash joined across the cheeks, people were commenting on it, and I felt crap, so I went along to em doc at the local hospital as I have a lot of allergies and my book came with me, and to be honest I thought it was an allergic reaction, so the em doc doctor gave me a cream to put on my face to take the irritation down and said speak to the rhumy dr. As you know, I had an appointment with her a couple of weeks ago and I looked in the mtx booklet and one of the side effects is a rash. I also had the tightness in the chest, slight breathlessness and I looked as though I had been sunburnt and I felt embarassed because everywhere I went it was the first thing people noitced.
    Well, I went to the rhumy dr and mentioned it and she was scathing and said it was my other medications, and I said well i have been on the other medications for some time now, and nothing happened like this, at that point had only been on the mtx for seven weeks, my face was fine before I started it, and I know it was the MTX she came accross like I am the consututant and you are the patient and you do not know what you are talking about. But I stood my ground and she lowered the dose from 15mg to 10mg upped the folic acid from 5 to 10mg, and said I coud stop the mtx if I wanted to. I am due to start the sulhazine in May I am trying to go in with an open mind and think it may work for me, but with my track record with reactions and allergies, hyper senstivities Hmmmmm. would say to you if it is really upsetting you, and the dr said to go to a and e think about it, also give the consultant and the team a call too make them aware of it. I am really sorry to hear about your poor son, bless his heart. Hope something turns up for him soon. Hang in there Tilda, sending warm wishes your way. Paula x

    sylvi
    sylvi

    Tilda, i am just reading the mail on sunday you magazine and there is a health section near the back of the mag and there is an item on there about facial redness.
    the stuff theu use is called Trigolgy certified organic rosehip oil. it is by victoria health,it costs £28.50 for 45ml phone number 0800 389 8195 or go onto victoriahealth.com
    I don't know if this is of any help to you but as i was reading it i thought of you. Get a copy of m.o.s and let me know what you think.
    sylvi.xx

    TildaT
    TildaT

    Thanks Sylvi - I'm writing it down because I'll be away next week and might have one of those health shops which would hopefully sell it but otherwise will order it. I don't think I'd stop the MTX for it at this stage as I'm hoping that my skin will aclimatise to it and as I have sore ankle and aching wrists plus - I really want to stay on it at this higher dose if possible at least until I get something else to add in. My OH says it's not looking as spectacular this morning so hoping that the antihistamines will keep working to lessen it back to just spots now.

    Like Paula I've always been very allergic to many things and come up at the drop of a hat with itchy red rashes - had to take steroids many time for them when they've got out of hand so to be honest it's a miracle that I have tolerated the MTX this well so far skin-wise! And having always had poor skin, it's been a lovely few years with very good skin so I count my blessings and just regard this as reverting to the bad old days a bit - facially anyway. I was a little concerned because it does say in the MTX side effects sheet that rashes etc are a bad sign but having read here that even breathlessness is seen as put up with it by many rheumies I'm not going to bother my GP about it until I see him anyway on Friday - by which time I'll be into my second dose at 17.5mgs.

    Your rheumy does sound very unpleasant Paula I really don't think you should stay with her if you can find another? I don't know why people like this do this job - it's not an easy specialism and mine seemed a bit jaded and not very inspired but he was perfectly kind about pain at least. When I said that this whole thing seemed to be severely affecting my quality of life - but added that most people probably say this - he nodded and said "well yes - not unreasonably?!" which suggests he was quite sympathetic if a bit beleagured. It must be a very frustrating job but I'm sure there's never a need for a doc to be that severe and unsympathetic. They earn enough after all! Next time I suggest you record the consultation and then you have grounds to make a formal complaint about her I feel. I recorded my last one in November and it's very useful to have - my hubby finally listened to the whole thing yesterday when I found it - and said he thought the guy sounded perfectly polite and pleasant but a bit bored and jaded - sort of worn out by the whole thing really! TTx

    Gina_K
    Gina_K

    Hi Tilda,
    Glad to hear you are sticking with mtx despite the problems :) my rheumy often says one of the main problems she hasis actually getting patients to take the meds, for one reason or another many feel they cannot tolerate.

    If your ESR & CRP continue to stay high with mtx they will hav to consider you for anti tnf.

    Xx gina

    TildaT
    TildaT

    Yes I hope so Gina - athough I think my ESR may be lower next time he takes it because I feel much less achy in general than I did - and that warm feeling in all my joints and limbs has gone away and that seems to go with inflammation for me - here's hoping anyway. I think people on anti-tnfs generally get sent to Aberdeen from here and there are some biologic nurses who then take over so that would be good for me I think but we will see. Last time my CRP was taken was early Feb and it came back at about 12 I think - almost within normal range -and has never been nearly as high as my ESR. Not sure what this means - if anything?

    I know you are right because my GP told me on the phone that he and my rheumy had discussed the depression thing and were both concerned about me wanting to come off it for that reason. I explained to him that this was not the case and I just wanted these side effects noted really in case they got worse or in case they can give me something to calm things down or make the mood changes go away. I did say this much more clearly in my letter to him so hopefully it may have got through at last that I'm not an irrational person who will stop taking a medicine for no very good reason. I just want honesty from these people not all this denial - maybe some patients need it but I definitely like to be treated with complete frankness and not handled with stupid kid gloves!

    I also said in my letter to him that if he thinks that injecting MTX might be a better way of avoiding side effects such as skin problems, exhaustion and weekly days of depression then I'm happy to give it a go. Do you inject yours Gina? I've been PMd by several people on here who have suggested this might make a big difference so am hoping my GP agrees. But not that confident that he will because he's baffled by my enthusiasm for taking extra folic acid - although he has accepted it but doesn't think it would make any real difference to the one a day 3 days after as prescribed initially. It would be good to know if injecting makes a big difference to side effects or not. TT X

    Gina_K
    Gina_K

    No, I take the pills, have never had nausea from them thank goodness.
    I do get fatigue for about 24 hrs, so I take Friday night have lie on sat morn, then try fora lie down Saturday eve,if I am going out Saturday night.

    I am building up to a very moany blog myself. Have had tiring week end, and have a few aches, including left hip which has never bothered me before.

    If you are on facebook, make friends with rheumatoid chicks, they have some great funny, informative stuff on there, also rheumatoid warrior on internet/ fb has lots of up to date stuff.

    Talk soon, g

    TildaT
    TildaT

    Thanks Gina - will look out for your blog and try my hardest to cheer you but I'm heading away tomorrow will be in transit so forgive me if I only manage a brief attempt at cheering you please. Hip sounds miserable. They are so central - like backs - bound to get you down.

    I've had some hip twinges recently too but I try to ignore and am exercising using Wii Fit and the hooplah aerobic exercise so blame that although it's never been a problem doing this before. I'm terrible at it as my hips are so not swingy and quite small. I never get more than a "beginner" rating despite trying me hardest (with teen boys falling about me swinging with invisible hoops and shouting expletives at the Wii when a new hoop comes my way and I fail to pick it up!

    But after a bad day for wrists and ankle yesterday - today a little better. Face swollen up like a lobster though so all thoughts are of getting it back down in time for my choir away trip which starts tomorrow - ahhh! Think I'm going to pass on the MTX tomorrow as I feel that taking the raised dose with all this going on skin-wise would be asking for trouble but hope to speak to a GP today to check. Even my lips are swollen now?! But I don't get nausea, hair loss or mouth ulcers so count myself lucky in that regard at least and promise I'm not quitting the stuff but think I need to bring in another DMARD.

    I don't have Facebook - cant face it! Leave that to the boys who live on it - apart from middle son who is too busy "living life to the full" (and beyond) ho ho! I go on RA Warrior's site sometimes - she's great isn't she! TT x

    lynn-bel
    lynn-bel

    I use Wii Fit a lot. Stopped the hula hoop though, cos it was doing my knees in more than hips! Good system though as you can pick and choose what suits you.
    Lynnx

    lynn-bel
    lynn-bel

    Hi - I got a rash from sulfazalasene (sp?) amongst other side effects so stopped it 12 yrs ago and take 20mg MTX a week now. No side effects besides some nauseau, tiredness, more susceptible to infections (common!) some depression, and strangely, like you, i do get the chest pain and breathlessness now and then. Like I have joint pain in my breastbone! Cons. pooh poohs it but several people I know with same disease say yes, you can get pain anywhere there is bone! Your skin troubles may be a reaction to MTX. the NHS direct line may be a good idea, did you do that? I find them very helpful.

    My RA cons. has just started testing for CRP but, typically, never explained what it was, just that it was another measure of my disease activity. Have no idea what it reads or what a good/bad reading would be!

    FB not for me either. just can't get my head round it.
    Hope you are feelign better by now.
    Lynn x

    mads
    mads

    Hello Tilda that does sound a bit ominous about this rash doesn't it. Like Lynn Bel i get a pain on my breastbone have been told by a physio it is to do with the thoracic spine but again like lynn the con ignores it.

    Is the rash enough to make you think of reducing metx? That is the question i had to think when i was challenging the cons about arava. She made it clear she did not agree with me but if it is causing that much havoc on skin surely that is telling me that something is not right.

    Hope the week of singing goes well and the redness abates.

    TildaT
    TildaT

    Hi Lynn and Mads. Thanks for the support. I've just been to see the GP. Think I'll blog again so I can do a members only one but she was amazing! TTx

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