RA

I've been taking methotrexate for 6 weeks now, got up to six 2.5 tablets a week and one folic acid tablet a week. Well I have to say that I felt sick and nauseous for at least 3 to 4 days from taking it. I was also feeling really dizzy and even fell down the stairs and bruised myself. Went back to hospital yesterday and they have reduced methotrexate to 5 tablets and put me on folic acid 5 days a week and given me a low dose steroid to take everyday and some pain killers if needed for the pain and aches I am still having. Started to feel good, but seems the symptoms are coming back, maybe as I had a steroid injection 6 weeks ago and it wore off. Hospital said it can take up to 3 months for methotrexate to work, so am feeling tired, fatigued and in pain still and generally unwell, hoping that this methotrexate will do something eventually. Has any body else had this problem and did you feel better in the end? or are we just destined to be like this forever now.

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  • Hi, I've been on methotrexate injections (never had the tablets) for 6 weeks now 15mg with one 5mg tablet the day after. Although the morning aches and pains have subsided I too feel totally washed out, empty and very down and low (not the usual me!) I have seen my nurse who told me to stick with it and see how I am. I see my consultant in November and if I still feel like this I will have to come off my meds and try something else, I work full time as a Prison Officer working 13 hour days and simply can't function properly whilst feeling like this! Hopefully in time the meds will establish themselves and everything will balance out for us, good luck and fingers crossed!

  • I started MTX on 6 x 2.5mg MTX & 5mg folic acid the day before & the day after, low dose steroid & pain relief. I changed to injections 11months later & noticed an improvement in my symptoms which were like yours. I still inject but now take 5mg folic acid each day except MTX day & even better on that, just more tired & little appetite the day after injecting. I'm on other meds too but they're to cover my OA.

    Things hopefully will improve upping your folic acid & your steroids should help too but as you've already been informed MTX can take up to 12 weeks for you to notice a difference. So hang in there, I know it seems an age but you should start feeling the benefit soon. :)

  • I was on MTX for 5 weeks gradually building up to 20mg and folic once week 2 days later but I had to come off it because of the side effects. It did start to take the joint pains away but I have had throat problems since starting it and now have to see ENT. I think if the throat problems hadnt started it would have worked for me. We are all different so what works for one person doesnt necessarily work for another. Good luck I hope you find a med that works for you. Gentle hugs Joolz.x

  • Hi Flossyjoolz- I was just reading your post on MTX and having throat problems since starting the MTX. I too have started just three injections ago and have seemed to either developed throat irritations: a little horse, dry throat, lots of phlegm and a feeling of swollen lymph nodes. My husband said it sounds more like allergies... or maybe it is from the MTX.?? Would you tell me what you experienced so I would know whether to call my rheumy? We do have rag weed here now in the States, so I thought maybe it is that but not sure at all. I got myself all worked up about it thinking the MTX caused something bad to creep in, but trying to not go there.

    Thanks,

    Lois

  • Hi Lois, yes my throat started to feel sore the day after taking first dose of 7.5mg MTX (along with nausea) but like you I thought it was allergy as it was May and I get a hoarse around May from tree pollen. But it carried on and dryness of my throat started and after about 3 weeks into taking MTX increasing each week by 2.5mg my glands in my neck started to swell and go back down again. They kept swelling and going back down and all the time my throat was feeling like it was getting worse with dryness and my voice was cracking and then I started dry coughing. I have also had a problem swallowing and sometimes choke on food. I saw my GP who checked my throat and said that the dangly thing at the back of my throat was dancing about and said he hadnt seen anything like it before but my throat was not red. He said I had picked up a virus which would go in time. I wasnt told to stop MTX so I carried on for another 2 weeks increasing dosage weekly. After 5th week of MTX and still throat problems worsening, I was just going to bed one night and I felt like my throat was closing up just like there was a balloon inside inflating. I just sat all night worrying that I was going to have to go to hospital. Cold water was all that seem to calm it. I phoned the rheumy helpline who got back to me the next day and they told me to stop taking MTX immediately. I went back and saw my GP again and he thought I had picked something up so prescribed penecillin which did nothing. 3 months later and several trips to GP I have now got an appointment at ENT. I still have all the throat problems, sore, dry, hoarse, dry cough and feeling like I have swallowed a golf ball with glands up and down and the occasional food choke. After reading here and the ThyroidUK site I am convinced that the MTX has upset my thyroid. Hopefully I will get an answer at my ENT appointment. I suggest you contact rheumy as you are worried and you need answers. Im not a Dr but maybe they could stop MTX for awhile to see if your throat improves it may not be MTX for you but I know it was for me. Hope get an answer soon. gentle hugs Joolz.x

  • Hi Joolz- that is so weird because you could have written my symptoms for me. I had my thyroid removed when I was 18 and am now 52, so it can't be the thyroid. When you say a "sore" throat, does that mean scratchy or hurts when you swallow type? I have that nasal drainage as well and was thinking maybe it is all from that. I go back to her in a few weeks and will tell her. How often are you coughing? I do have a bit of a cough, but it is not constant... just every now and again and it sounds like a nasal drip cough. Could you see your glands swollen or feel them. I know what that feeling in your throat feels like... it is scary. I may call them today and just tell them what is going on. Mine did not start until a little over a week ago. I had my third injection this past Sunday.

    Thank you so much for sharing with me. Keep me posted when you go to the ENT. Are you taking anything for the RA at this point?

    Hoping you feel better soon. We really don't need added things to it do we?

    Big hugs, Lois

  • Hi Lois. sore throat is more uncomfortable than painful and cough isnt all the time mostly like a throat clear kind of thing but I have been choking on food a lot even if I eat very little and slowly and sometimes even when Im not eating or drinking. My glands dont show as swollen but certainly feel it and once or twice also my glands under my arms have come up. My GP commented that my neck is dipping in just under my voice box. After MTX ended I was prescribed Hydroxychloiquine by a different Rheumy than I normally see. I have had this 3 weeks and havent started this yet as I have questions about this drug. The Rheumy didnt ask if I have tinitus or trouble with my eyes (which I do as they are blurry at times) he didnt ask when I last had an eye test. This drug Hydro can cause irreparable damage to eyes and an eye test before starting is essential and tinitus is also a side effect along with the usual nausea etc. My other reason for not starting this is that I need to know what is going on with my throat before I start possibly adding to the problem. My GP has prescribed me a stronger pain killer and agreed to check my thyroid antibodies but not T3 or T4 but at least its something. Ill let you know how I get on at ENT. Hope you feel better soon. Gentle hugs Joolz.x

  • That is so weird... mine do the same exact thing and I start to panic thinking it is lymphoma or something. Mine feel the same way... no visual swelling, but they feel that way. I was having trouble swallowing and getting hoarseness and went to my ENT and he found out that I had a paralyzed vocal cord... he thought at first it was a tumor in my chest or something... did CT Scan and nothing. They finally said that it came from either a virus or when I have had many surgeries, they must have damaged it while putting in breathing tube. My glands also get the swollen feeling under my arms. I am going to talk to my rheumy when I go back in a few weeks. I know that she feels my glands when I go back but does not say anything like she feels anything. Someone who also has RA on the support group said that it is coming from the RA... ????? I wonder why they are not checking your T3 and T4? If they check just your TSH, it will not tell them the entire story of the thyroid. I have had mine out as I said since 18 and now 52 so I am very familiar with how they can find out the best results. Your TSH can come back fine, but your other two can come back out of whack. Did your GP say what the "dipping" would mean? Regarding the hydro ( Plaqunil ) I have been on that for over a year. I get my eyes checked every 4-5 months and no problems yet. I take that and the MTX. Thanks for talking to me and I look forward to hearing your ENT visit results. Will be praying for good results for you. Maybe I can figure the same thing is happening to me since our symptoms are almost identical. I too have the cough as you... not a cough, cough, but more of a clearing the throat. My thyroid has also been out of whack with my meds since starting the hydro and MTX. UGH.

    Hugs,

    Lois

  • I started on 4 mtx every Thursday, this is my 3rd week of taking 6 mtx, first week on 6 i was dreadful, could have slept for England the next day, took 6 again last week felt on top of the world, so i think myself they are starting to kick in, only had the sleepy bit nothing else, so lets see what happens tomorrow, hope i am ok, back at work for the full 5 1/2 hours, don't think boss will be happy if i fall asleep, lol will let you know tomorrow night :)

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