Methotrexate

Methotrexate

Hi all

I'm just starting methotrexate for the first time Monday. Can anyone give me any ideas of any reactions to expect. If I react badly I have a fallback. I spent 10 years on azathioprine for colitis and it actually cleared up the colitis so I was taken off it.

But would love to know what to expect.

Thank you all

And hope you're all not feeling too bad at the moment.

Pete

How I look at the mo!!

Actually Eddie the mascot from iron maiden.

17 Replies

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  • I've been lucky , no side effects and actually feel better than I have done in a long while.. although my ANA levels are sky high and dose has been doubled so watch this space

  • Hi

    I'm on 25mg a week, have been for about 6 months now. I do feel a bit sick for 2/3 days after taking it but never have been, you have to weigh up the pros & cons. I hope you get on ok with it, I think the key is to give it time.

    Good luck

  • Thanks

    I'll give it a try

    But I've been on azathioprine before so if I react badly I've at least got a fallback thanks for your reply

    Perez

  • Hi I've been on methotrexate for about 6 years now. Follow the instructions about food and other medications and you will probably be okay. Everyone is different so please don't take it for granted do the regular blood tests

    Good luck hope things settle down

  • Hi Peter

    As long as you take folic acid along with the Metho but not on Metho day , you should be fine. If you do get side effects they should settle over time. I'm interested you have Colitis, how is it now?. I too took Aza for it and it was very effective, had to come off as it affected my blood count!. You did well being on it 10 years!. Hopefully Metho will help both conditions.

    Good luck.

  • Hi

    Thanks for your reply.

    The colitis has gone. Full stop.!!

    I know that's not supposed to happen and once you've got it, you've got it for life. I took aza for 10 years. Had to build up slowly cause it made me sick when they gave me full dose straight away.

    I was heavy by then coz the combination of lack of activity (my job although very "busy" was mainly driving. As you can imagine not fun with colitis!! Had to have a mental map of all the public toilets. Or it was nip into McDonald's lol. It got to the point where I had a colostomy booked the lot. As soon as I went below 20mg pred......bang flare up. This went on for 8 years and of course by that time my adrenals had packed up their bags and gone to Florida so I ended up having to stay on steroids, but I'll tell you about that later!! So they tried me on aza. After we got the dose right. 6 tabs a day!! Coz I had got to nearly 21 St, the colitis stopped immediately. Never had another flare. That's why I think I'd probably prefer to go back on aza again. I know I can tolerate it. It doesn't make me nauseous or any other side effect. But I'm told methotrexate is more effective. Anyway when my wife died from the dreaded big C in 2010 I took a look at myself and thought "you're next with a heart attack, then your kids'll have no parents at 16"

    So I started eating healthily and I'd always been very keen on fitness until I got the colitis. So I started cycling and swimming and going to the gym. In 11 months I lost 8 1/2 stone and got completely fit. Fitted into the same size Levi's as I did when I was 21!! Boy that's a good feeling lol

    But we had forgotten about the aza. The dose of which is weight related. I'd dropped to less than 2/3 of my original weight and was still taking 6 tabs. Enough for 21st. So then I got a liver enzyme shoot up and they took me off them. But of course none of thought at the time about lowering the dose. But I then found I didn't need them. I stopped asacol as well From about 23 tabs a day down to about 7. Brilliant. Apart from the fact that 4 of those were pred. Two years ago I had a colonoscopy and there were so signs that I'd ever even HAD colitis. So it was recommended that I get off steroids before my skeleton fell to bits. I had been on them for 16 years by this time. I was warned by my rheumatologist that I would start suffering severe osteoporosis unless I got off them. So I bit the bullet and went to the endocrinologist ( this is where still being on aza would have been good) he took me off pred. No wind down straight from 20mg pred per day to 30mg hydrocortisone, which is almost a 3/4 drop in anti inflammatory power. But I felt great!! That constant anxiety from pred- gone, the being hot all the time-gone. The sweating and agitation cycle-gone. The aggression-gone. The sleepless nights coz of having daytime levels of cortisol for a normal person at night keeping me awake till 5 am and then feeling tired all day-gone. I Just felt like a normal person again. then after 5 weeks.....Crash!!! I woke up one morning and couldn't move. My hands and feet felt like they were being cut by burning razor blades. In pain level 1-10 I would say that they were above a 9. I went to my GP. He put me on good old tramadol. God that made me ill. I had been on venlafaxine before for an anxiety depression illness. the brain zaps, the shakes. Tramadol they say. Non narcotic they say. No withdrawal effects they say.

    1 how can it be non narcotic? It has an opioid nailed on the side of what is basically venlafaxine

    2 no withdrawal effects. No with this one it's a bargain. 2 for the price of one. Morphine withdrawal and SNRI withdrawal too!!

    I tried them for 4 weeks and found I had to up the dose every week to stop the brain zaps and up the pain relief which because I was on the full 8 per day causes you to develop tolerance very quickly. Within 4 weeks I was taking 4 x 6 tabs daily. So I called my GP and he called me in and we set up a phased withdrawal. I do a lot of reading about the drugs I take and can always have an informed discussion with my doc instead of him just telling me. So tramadol. 4 weeks tried usage, 28 week phased withdrawal lol. Then it was di hydra codeine but they didn't even touch the pain. Then good old sister morphine. Found my dosage that killed the pain which was 60 mg MR tabs 2x daily. For about 4 months I wandered around like a zombie with dementia. Because it does give you the symptoms. You started forgetting names, why you are in the kitchen!! But I think everyone suffers from that!! Halfway through a sentence you'd just stop coz you'd forget what you were talking about. I'd phone my daughters (one of whom is a nursing undergrad so knows all about all this.). I'd then phone them the following day and tell them the self same things. My eldest daughter got worried and contacted my younger daughter. She said "don't worry dads on morphine, he'll be like that until they take him off it." Finally after 7 months of being told I was going on methotrexate, 7 months of hell on bloody morphine coz it had taken them that long to process the specialists request for me to go on methotrexate. In this time I saw the endocrinologist and he kept putting me back down to 30mg hydrocortisone, my feet and hands would get the steroid bounce flare again. Apparently coz your pain nerves have been held in check go years by pred, they just all start firing at once. Apparently being on morphine stops this phenomena. When you come off the morphine after being on it for long enough it normally doesn't come back. This is where I come back to aza. Had I still been on it I probably wouldn't have had all the problems above. Anyway there was no sign of anyone doing anything about the morphine. To help with my anxiety due to the pred I had been on diazepam and at this point was taking 20mg a day. So I read a blog called I ( I think) Steves cold turkey cookbook. It said get a lot of paracetamol to stop the flu like sensations and diazepam to take away the shakes and anxiety. I built up a stock of about 80 diazepam to stop the anxiety. Anyway. I tried it. I didn't tell my partner coz her father had just died. Which was a big mistake. On the second day proper I had a huge hallucination which wasn't violent or anything but in my confused state I basically trashed the kitchen. Not damage wise but just pulled everything out of the cupboards, then fell asleep on the settee. Front door open, the lot. Partner comes home about 6 hours later, front door open, kitchen trashed, me asleep. So she calls paramedics and my late wife's parents. Now my late wife's dad is nice enough, but when there's A situation he turns into captain mainwaring "I'm in charge here!!) unfortunately it normall ends up more like basil fawlty is running the show. Of course everyone thinks I've OD'd. Not exactly the opposite!! So the paramedics go through my tablet drawer and take everything out and say "why have you got these? Why are you taking these. These were my supplements. Glucosamine FFS they said I shouldn't be on that. 3 days without it and my arthritic hands seize up. Only supplement I've ever found that REALLY works. Then of course they found my diazepam and asked what I was doing with so many. Well I was so far out of it I couldn't talk let alone answer. So they put all my stuff. Including 5-bro and thiadine which had really helped with the tramadol withdrawal coz they kept the symptoms at bay. "Where' you get these?"

    Off a reputable British Internet site I say.

    They say "all medicines on the Internet are dangerous. B*ll*x!!! Only if you're trying to buy illicit stuff, not supplements

    I mean you can get 5-htp at tescos and thiadine at Holland and Barrett. If you want to pay £300 a bottle lol so I ordered online. Then capt mainwaring takes over

    orders the paramedics to put all my tabs in a bag which he then hides and orders them to put a report into my GP. The good capt comes with me to the docs on Monday morning. Tells my doc I don't need any of this rubbish. I by that time am on day 4 of cold turkey which is about the worst day. So he gives me all my normal tabs but no diazepam or codeine whatsoever. By Tuesday the thoughtful death was enticing. So I phoned my GP. and he wasn't there. So I spoke to another one who when told I'd just gone cold turkey on morphine and benzodiazepines just said "Jesus how long have you been off both?" so I said "today's my 5th day." So she said could I get down there there's a bus stop about 150 yds away from where I live. I managed just to throw some clothes on hobble to the bus stop and get the bus to the doc. She gave me 10 diazepam and 28 codeine. Loperamide and diazepam.

    I went home took some of the tabs and felt fine. After a couple more days I felt perfect. Better than I had felt in 6-8 months. I can walk about 2 miles no problem. Start the meth on Monday so that's my story. Sorry it's a bit of an epic, but I think trying to explain bits of that out of context. The colitis Is still completely gone so everything looking up now.

    Pete x

  • Hi Pete im also on methotrexate have been for 7years for scleroderma , I still have side affects of dizziness on standing ,nausea, im now in a wheelchair but do use a rollator for physio but not on day after methotrexate days as im worried about falling .thats my only symptoms it get easier to manage . Burnise

  • Hi

    Thanks for your reply and good luck

    I took my first dose yesterday as I've got a funeral today. I reacted ( and still am) terribly to it. To start with went straight into a horrible "drug induced" sleep and as I was visiting my daughter that's not very good. Had to lay down for 3 hours. Sick all night. Aching like flu everywhere. No sleep after that initial crash. Freezing cold whereas I normally suffer from heat having been on pred for 18 yrs. on hydrocortisone now as my adrenals have packed their bags and buggered off to Florida. . if you see one of the replies above it tells the full story. If you can't see it. PM me and I'll copy and send it too you

    If I'm going to have to tolerate this once a week then methotrexate and I are going to have a rather short relationship. But as I've said before, I know I can take azathioprine having been on them for 10 years. Came off them after a total brail fail by me and my doc. I'd got big (21 St) due to steroid use and lack of activity so my dose was 6 tabs a day. Don't ask how much that was as it was a long time ago and I wouldn't have a clue.lol. Anyway for reasons you'll see if you read the long story I got fit. Got down to 12 and 1/2, stone then started to put weight on as I was getting very muscly and muscle is heavier than fat. Having been in size 40 jeans I could suddenly get into a 30 waist pair of Levi's. The same size as when I was 21. Problem was I carried on taking 6 tabs a day when I should really have dropped the dose to 3 tabs a day. Inevitably one of my liver enzymes shot up and I was taken off them. It was only after that we realised that as azathioprine dosage is weight related and I was less than 2/3 of my original dose, I was in effect overdosing by 50% every DAY. so no wonder. But it looks like I'm not going to be able to tolerate methotrexate so it's back to aza.

    Pete x

  • Hello Peter

    I hope you feel a bit better today especially as you have a funeral to cope with. You might have picked up a bug, sometimes it's not easy knowing whether we're flaring, have an infection or it's drug side effects!. If you can bear it , it might settle down as your body gets used to the Metho, giving it time you will see.

    You've certainly been through it with your health , pills and life!. Colitis can go into remission so fingers crossed it has for you and it stays that way!. I found Aza the best treatment for mine and I am missing it but had to come off it. Now like you've had to I'm juggling steroids, trying to reduce them and keep getting attacks. Was yours diagnosed by Colonoscopy?.

    Well done with losing all that weight, fantastic achievement which has got to help your health!. What a time you had coming off those strong painkillers!. Must have felt awful!. I've been doing similar but luckily didn't have the same problems as you. It's hard now finding a drug I can tolerate that will give me better pain relief so that I can drive and live basically. That's all we're asking isn't it, to be able to have a life despite chronic illness!. It's tough enough to have Lupus without the extra of Colitis!. Fingers crossed you can take Metho and you feel better. Misty.

  • Thanks misty

    I had a colonoscopy 2 years ago and the consultant said that there is no evidence that I'd even ever had colitis not just looked like it had gone. Haven't had a flare for 14 years so I think I'm pretty safe on that one. Thanks anyway. Diagnosis was done coz I had had a bad bout of diarrhoea as a result of an allergic reaction to flucloxicillin and my bowel went into spasm. So I went into hospital to have the spasm "sorted" and I think they used a sigmoidoscopy to have a look

    I then had colitis from 1993 to 2001 with the problem that to start with, every time I went below 5mg pred the colitis would flare again. Back up to 30-40mg. Then the threshold started moving up. Couldn't go below 10mg. It ended up at 20mg. I had colostomy booked, the lot. Then they put me on azathioprine. At first it didn't tolerate it. So they started me on a lower dose and built up and it was fine. The only reason I came off it was I got a bad lft. So the doc took me off it. It came to me later why I suddenly had the problem. When I started on azathioprine they set the dose up by weight. At that time 21 St.

    Then of course I lost 8 and a half stone. But we never lowered the dose!! So I was overdosing by about 60% daily. For over a year. No wonder I ended up with a bad lft. I ended up being on pred at 15-20 mg for 18 years in total. 18 YEARS!!!

    I was told I shouldn't have a skeleton left. I would have osteoporosis. But according to my rheumatologist my exercising prevented osteoporosis. I took all the supplements. Alendronic acid, calcichew. ( mm lovely, chalk for breakfast. Lol ). Vitamin D ,E. But I used to do about 16-18 hours strenuous exercise per week.

    Had a dexa scan done 3 weeks ago. My bone density is better than the average 57 year old who ISNT on steroids. Anyway been moved onto 30 mg a day of Hydrocortisone with the aim of getting down to 15mg. But this problem caused me to go back on to pred only to find that it had no effect any more. Except the anxiety, sweating, weight gain, agitation. Constantly feeling hot and having to have a fan on me. Oh and the aggression. All those seem to have gone with coming off pred. Always found pred the best. But after being on it for 18 years to feel relaxed again is a treat I never thought id get. A decent nights sleep. Not lying staring at the ceiling until 5 am when I'd finally drop off only to be woken up by the alarm at 7. I would sometimes "crash" for a day and just stay in bed asleep. My youngest daughter was with us yesterday who is doing a nursing degree so she can apply for the sister, matron, nurse practitioner or consultant nurse jobs. She saw me take the methotrexate (which is in fact chemo therapy at a low dose) and within an hour I crashed into one of those horrible drug induced sleeps for 3 hours. Woke up with flu like symptoms. Was up most of the night with D&V and had terrible flu symptoms. Took me 4-5 minutes just to turn over in bed. And it was painful. I am still feeling "flu-e-fied. Don't know how I made the funeral this afternoon. I came back from my daughters in fleet with only half my gear coz I was so Ill I forgot half my stuff inc my tablets. So I've now got to go to town and get 4 diazepam, 4 codeine and one 10mg zolpidem. Then back to the docs to pick them up. What steroids are you on

    Pred? Or others?

    That's what I would love. A painkiller that doesn't take you 6 weeks to withdraw from. A painkiller that does just that!! My daughter says for reasonable pain (obviously not serious trauma or post op) is 500/30 cocodamol is about the best you can do. It's only my daughters and my metal music that keep me going. Oh and Spurs.

    Loved metal music since my first black sabbath concert in 1972. Love metal core death metal, black metal, deathcore. Straightforward heavy metal especially the mighty maiden!!!!

    When I stop loving NEW metal and start harping on about how Zeppelin were better etc. Then I'll give up. Still if I'm fit enough get to about 1-2 gigs a month and a festival or two. (Download and sonisphere or hevy fest or bloodstock)

    Ie all the metal ones. Play s bit of guitar too. Keeps my fingers mobile.

  • Hello Peter

    How do you feel today?. Hope a little better. The steroid dose you were on was horrific for 18 years , thank goodness you saved your bones with exercise and the bone strengthening drugs!. Hope in time you'll be able to reduce the hydrocortisone to 15 mg!. I take prednisolone, I'm flaring so on a higher dose for a few days then will go back to 14 mg for a fortnight then hopefully reduce again. Need to get to below 10 mg!. If only they didn't have such worrying side effects!.Coming off these drugs is so hard, it's almost like being an NHS drug addict!.

    It's great your youngest daughter is training to be a nurse, she could be very helpful to you and interesting what she says about Cocodamol 500/30mg, they're what I'm taking now and giving better relief.

    Interesting colitis story, hopefully it's gone for good for you, one thing less for you to cope with!. I was told once you can have a one off attack of it by a Consultant!.

    Good luck. Misty.

  • Hi misty

    I replied earlier but it seemed to disappear into the ether!!

    Still a bit fluified coz of the methotrexate, but have been told to expect it to last a week.

    Be careful with prednisolone. My case was with the UC from the very start I could never get below 5 mg. only thing I can think of was I had addisons.

    Then after another couple of years that became 10mg and so on until I was on 20mg. I think if I hadn't gone to get taken off pred and on to methotrexate, which unfortunately as you know I can't take. Hoping to get on azathioprine ASAP. I've been trying the co codamal. But it's given to me separately so I can either use them as paracetamol or co codamal

    If I take 8 paracetamol daily it can keep the pain at bay. But if I overdo the walking and my feet flare, then I can add the codeine and take co codamal to ease the pain. Obviously I'm not your GP or specialist but it's worth a try if you feel it might work for you.

    I don't believe I've read what your condition is so I can't say whether this would be any good for you. The only other thing I can suggest for the pred side effects is exercises. If you go to your local gym, if they've got a vibration machine they are brilliant at preventing osteoporosis. But if you already have osteoporosis do NOT use them. If you exercise, for it to be any good for osteoporosis, it must be weight bearing. Cycling not too bad, but you really need to be on your feet to mean that your weight is on your legs, spine etc.

    Hope your flare stops soon coz I remember my UC flares. Awful. Having to go to the loo up to 40 times a day. 10 at night. The only time I got any respite was when I took my pred. Which could be 40mg. But then of course, I'd be so whizzed up on steroids that sleep was out of the question. So as I was getting at least 4 flares a month it was just a nightmare.

    I'm feeling a bit better today but now hot and cold and very agitated. Lol.

    Thanks for your reply

    Pete x

  • Hi misty

    How are you today? Hope your flare is coming under control.

    I still feel wobbly, feverish, no appetite but no pain in my feet and my legs don't ache at all. Hope this isn't "how it could have been" except for the severe toxic reaction to methotrexate though I think 3 days would have been a bit quick. Can even run up the stairs at full pelt today like a kid. Feel full of energy and if I wasn't so feverish might even go for a bike ride.

    But it's probably just a good day and no doubt will be back to normal tomorrow

    Hope you're well

    Pete x

  • Hello Peter

    Thanks for your messages. Glad you've got some improvements so maybe don't give up on the Metho just yet. I wouldn't have thought one pill could make you so I'll, might have been a bug

    No wonder you had the bowel op booked, your colitis was bad, must have made your life a misery. You sure don't wNt that back!. I'm lucky in that mine is mild but it's very a symptomatic making it hard to reduce the steroids!. I've thought of your steroid experience and don't want to be stuck on the higher doses!. I'm about to go back to 14 mg from 20mg with the idea of keeping reducing a mg a fortnight till I get to 12 mg then I can do it monthly. I'm fortunate I don't get the side effects like you, sleeplessnessetc but I have developed osteoporosis which I've always dreaded. I take all the bone strengthened pills like you as I can't exercise normally. My flare has been the connective tissue disease and colitis. I'm diagnosed with UCTD which is symptoms of three possible CTD's lupus, RA and Scleroderma. Body can't make up it's mind which to be!. Have you got a Lupus diagnosis?. Hope you've got a good GP and Consultant. We need their support don't we?.

    Interesting about the co-codamol coming separately, didn't know that. I need the two ingredients together for nerve pain in my right leg, more effective than just paras.

    Hope you lose the flu feelings, horrid feeling grotty.

    Take Care

    Misty.

  • Just been doing a bit of reading up on UCTD. Really sounds like what I'm suffering from. But then again so do a lot of other things!!

    I can see why they have to eliminate all other diseases rather than diagnosing one.

    They all have such similar symptoms. My aches and sleeping were helped by being on pred. If not I was asleep 12-16 hours a day. On pred I was lucky if I got 2 hours!! So any that aren't helped by pred can be eliminated. But UCTD does almost fit my symptoms to a tee. Unless you don't get sleepy days, in which case I can rule that out.

    Actually had something to eat last night. Some smoked haddock and brown bread. Both pretty light on the stomach. I felt queasy for about 1/2 hour after but then it went. But now today have no appetite except for grapefruit segments ice cold out of the fridge!! Nothing else. Just those. Why???!!!!

    Who knows. Perhaps it's my body's way of telling me where I can get what it needs. That and I've been told to drink a lot of tonic water. No not with gin in it!!! Apparently tonic water contains a lot of electrolytes etc which after D&V your body needs. Just lucky then that it's my favourite soft drink and I get through about 16 litres a week. I used to drink it for the gym as quinine stops cramping. But I just love the sharp taste!!

    Pete x

  • Hi misty

    Unfortunately I can't stick with methotrexate as what I had was a severe toxic reaction. I've got to have LFT FBC Us&Es blood tests to make sure no permanent damage has been done to my liver. Got to wait 2 weeks for everything to die down. Then the blood tests then if the lft is ok I'm on to azathioprine which if I start on a low dose and build up has no effect on me at all. It's just another tablet if you see what I mean. It's azathioprine that cleared my colitis. No azathioprine and I'd be sitting here with a bag on my side. I kept working through that illness. How the hell I did that I shall never know. I had 2 young children so the wasn't much choice. My job made it worse as I was a field service engineer and spent a lot of my time driving round the country. I had a mental map of public toilets, pubs, mc Donald's, kfc in case I needed to stop quick lol. My late wife had breast cancer and had had it 4 years. 4 years of operations, radio and chemotherapy general misery. I was lucky. I had a very understanding boss who allowed me to work from home the whole time and as long as I had my phone with me, I went on all the hospital visits with Karen, over 100. She noticed a lump on her neck while we were on hols in France so when we got back, we went to the oncologist who said we were running out of options on the chemo front but there was a tablet form which involved taking 4 huge tablets in the morning and the same in the evening. I suppose the tablets were so big coz what they contained was so toxic that it had to get to a certain point in your gut before that was released. Unfortunately, she took them for two days then collapsed. Was rushed into hospital. She'd had the same as I have. A severe toxic reaction that very nearly killed her. Here was mine x 1000 though. Anything she ate or drank just came straight back up again. So she was fed and watered by tube for a week. This weakened her so much that they said no chemo for 6 months. It got into her bones and she had 5 vertebrae collapse. More radiotherapy and infusions of alendronic acid. In the end her veins were so shot they had to put a central line in. She got a pain in her leg one day as she stood up. They scanned and scanned her and found nothing. So they tried a good old fashioned x-Ray and she had a hairline fracture right through her pelvis from top to bottom. And she had been walking round on it for nearly 6 weeks. Then she was confined to a wheelchair and then more vertebrae went. Then she was bed bound. She was to I'll to visit the oncologist so the oncologist came to our house with the news that it had spread to her liver and that it was now just a matter of time. Karen asked not to be told how long. But I asked the oncologist on her way out how long. She said 2, maybe 3 months. She lasted 13 days and died on March 17 2010 in what ended up being the year from hell. About a fortnight before Karen died my dad had a massive stroke. This didn't affect him physically but destroyed his hippocampus so any memory after about 1950 was wiped. He can't lay down new memories either. So he doesn't even really know who I am. He knows my name is Pete but the concept of relationship means nothing to him. So it's like I lost my dad. As we knew in 2005 that Karen probably only had 5 years left we just went mad. Holidays. A new car for her, etc etc. We ran up about £30000 of debt but because Karen worked in the NHS she was life assured for telwice her salary. That would be £36000. So would clear the debt and leave us enough for a holiday. I got called up to see her manager who gave me the envelope with the cheque. I opened it and had to slap myself to make sure I wasn't dreaming.

    £184. That's it. I asked why. They said she wasn't in the pension scheme. She hadn't read her Ts and Cs properly. So I had that to deal with too. Then on 3rd August I got a phone call from my brother who was looking after mum and dad. So I thought something had happened to dad. Wrong. Mum had died in her sleep. Then a month after that my brothers partner of 20 years died from chronic alcoholism. Then in November my closest uncle who despite him supporting arsenal (I'm a spurs nut) had been like a close friend. Ken, my dad and me were often to be found on the golf course or at the pub. All gone. That all happened in 8 months. Then I got mixed up with an ex girlfriend who told me she split from her husband. She'd come up and stay and it was really nice......for a time. When I discovered that she was still living as man and wife with her husband. I think she was a substitute Karen for me. Put my recovery back by about a year. Then in July that year I was made redundant. So that all happened within 14 months. I was ok then coz I had the task of getting my girls through their a levels. Lots of meetings at the school coz they had lost interest. I'm pleased to say they both got to uni. One is, after changing from psychology after her first year coz she hated it even though she got a 2-1, taking a nursing degree. The degree entitles her to senior positions and nurse consultant and specialist posts. The older daughter had taken a year out coz her year was the last year of the cheaper fees and she couldn't get on the course she wanted. She then started a music journalism degree. She had a part time job at Apple and hated uni so much that Apple offered her a full time post and she now works behind the Genius Bar at the reading branch. Steph is in UEA Norwich.

    The problem with Sian taking a year out was that it meant they both left home within 5 days. That's when I lost it. Nervous breakdown. Severe anxiety and depression and I decided to self medicate with vodka. That led to me getting a 3 year driving ban. The most shameful thing in my life. It took me 2 years of therapy and medication to get me rational again. Then just as I got well they changed me over to HC as prednisolone was adding to my anxiety. That's when this reared it's ugly head and that's the way it's been ever since.

    Not the best 5 years.

    Don't know what I've done to deserve this. Perhaps I should give up my beloved heavy metal music (I'm not talking meatloaf. Lol. I'm talking extreme metal, death metal etc. but I do like normal metal like iron maiden and metallica too) I still go to gigs once or twice a month and the annual pilgrimage to donington for download festival. Sorry it's a bit of an epic but I thought that as I was on the subject of extreme toxic reactions I'd tell you my full story. How on earth I've come through it without harming myself I don't know. Just the thought of the look on my girls faces if I did anything kept me going. That's how my life changed from a happy family life to hell. That's why I was so happy to see both my girls last weekend. I hadn't seen Sian since Xmas eve and Steph only twice since Xmas coz they don't get the long holidays on a nursing degree.

    My GP and specialist haven't made a diagnosis yet. They don't think it's fibro as steroids make it go away a bit. there's a possibility that its CFS or poly rheumatic arthritis (don't know if I've got that right!!!) but that's what I think they said. Polymyalgia , but they're ruling them out as they go along. At the mo its 3/1 on CFS as when I get a flare I can sleep for 16-20 hours a day and just can't move. Pain in my feet I'm told is a "rebound pain" after coming off pred after being on it so long.

    Well you've probably fallen asleep by now so I'll leave you to it now.

    Pete x

  • I have been on methotrexate for more that 8 years. Was on tablet's until 2 years ago, but now self inject. Goes straight into system so no more nausea. As I have had cellulitis and chest infection for 2months, taken off metho. Had massive flare of RA couldnt walk or do anything, couldn't even hold a spoon. Back on metho and things are starting to improve. Try not to look for reactions, give it time to get into your system and hopefully you will see the benefits. Good luck x

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