Hi new here, Starting Methotrexate

Mclean70
Mclean70 Member Posts: 14
edited 24. May 2018, 04:28 in Say Hello Archive
Hi
I am 47 and recently diagnosed (after a long slog) with sero-negative inflamatory arthritis in multiple joints.
My symptoms really started about 7 months after chemotherapy for breast cancer . I am told that I probably was always going to end up with arthritis, but the chemotherapy would have brought the symptoms on with a vengeance. Which it certainly did :( My life has been turned upside down the last few years. From one illness to another.


Just found this forum and so glad I have. Hoping to hear from other sufferers for support and to learn from their experiences , as I don't know anyone with this.

I have just started on 10mg of methotrexate and am having some side effects. Dizziness or cotton wool brain, nausea are the worst. Especially the day after tablets. But still having dizziness on and off throughout the week. Is this normal? Will it always be like this?

Thanks

Comments

  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    :?

    We seem to have lost the original post here. Any chance of having it back, please?

    (I know. It's the Bank Holiday. All computers have been sunning themselves on beaches :wink: )
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. You have been / are going through the mill, aren't you? I am truly sorry.

    I have been taking meth for years (I do it via injection, my dose is 15mg) and have not had any trouble with it apart from feeling extra tired every now and again a day after the jab. When I was on the tablets I developed a rash so I was taken off it pronto. Was meth used in your cancer treatment? I too have a sero-negative form of inflammatory arthritis which was eventually diagnosed as psoriatic - the label changed but the meds didn't. Have you been prescribed folic acid to help counter-act any possible side effects? If so how much and when do you take it?

    It's best to take the tablets with a little food to reduce the shock to the stomach - this can also reduce the nausea - I once had to take a weekly med that made me feel very sick so I would drink a full-fat coke, I guess the sugar helped me feel better. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    Hello. You're back :D Your post disappeared st first.

    I was diagnosed with RA at 15 but, luckily, no other illnesses worth mentioning apart from breast cancer in which, oddly, my experience was the exact opposite to yours. I couldn't understand why my RA was so good while I was on chemo given that I was unable to take my usual meds. It was only some years later, when prescribed methotrexate for my RA, that I discovered it was first brought out as a chemo drug (in much higher quantities than we take for arthritis). To me, that explained why I was so good on chemo but I guess we're all different, and react differently to things, so your own experience was not so good.

    Initial side effects can wear off if we persevere but don't persevere for too long without checking with your rheumatology helpline. As DD says, folic acid is prescribed to protect against side-effects and often all that is needed is an increase in dosage but this is for your rheumatology team to decide. The dosage of FA is the most variable ever - some are on one tablet weekly and others six days per week. I've got by well for years on 2 per week.

    I do hope you'll be able to overcome your nausea etc Meth has been very good for me for about 18 years now.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Mclean70
    Mclean70 Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi everyone, Thankyou so much for replying.x
    Interesting what you say about the chemo. I did not have any bother before or during chemo regarding the inflamatory arthritis, but months later my immune system went haywire . Like having no immune defences to recovering slowly and ending up with over hyper immune system . [emoji35] With knees hips elbows shoulder ankles wrists and hands very painful and badly swollen . Along with flu like aches when it flares.

    I seen my rumatoligist today and chatted through the side effects I have been experiencing, and as my blood pressure was also up she decided I have to drop down to 2 methotrexate tablets a week for 2 weeks, then 3 tablets for 2 weeks, until back on to 4 again. Hopefully my system will get used to it. Also to start a low dose steroid tablet, every day for 6 weeks if I feel ok on it.
    Hoping for a better week [emoji4]

    Sent from my SM-G900F using Tapatalk
  • Mclean70
    Mclean70 Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi everyone, Thankyou so much for replying.x
    Interesting what you say about the chemo. I did not have any bother before or during chemo regarding the inflamatory arthritis, but months later my immune system went haywire . Like having no immune defences to recovering slowly and ending up with over hyper immune system . [emoji35] With knees hips elbows shoulder ankles wrists and hands very painful and badly swollen . Along with flu like aches when it flares.

    I seen my rumatoligist today and chatted through the side effects I have been experiencing, and as my blood pressure was also up she decided I have to drop down to 2 methotrexate tablets a week for 2 weeks, then 3 tablets for 2 weeks, until back on to 4 again. Hopefully my system will get used to it. Also to start a low dose steroid tablet, every day for 6 weeks if I feel ok on it.
    Hoping for a better week [emoji4]

    Sent from my SM-G900F using Tapatalk
  • Mclean70
    Mclean70 Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi everyone, Thankyou so much for replying.x
    Interesting what you say about the chemo. I did not have any bother before or during chemo regarding the inflamatory arthritis, but months later my immune system went haywire . Like having no immune defences to recovering slowly and ending up with over hyper immune system . 😡 With knees hips elbows shoulder ankles wrists and hands very painful and badly swollen . Along with flu like aches when it flares.

    I seen my rumatoligist today and chatted through the side effects I have been experiencing, and as my blood pressure was also up she decided I have to drop down to 2 methotrexate tablets a week for 2 weeks, then 3 tablets for 2 weeks, until back on to 4 again. Hopefully my system will get used to it. Also to start a low dose steroid tablet, every day for 6 weeks if I feel ok on it.
    Hoping for a better week 😊
  • Mclean70
    Mclean70 Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi DD
    Thank you for your reply.
    I do take folic acid 5mg every day apart from day of meth.
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    The overactive immune system is the root cause of all types of inflammatory arthritis. For some reason, or reasons, it decides our own bodies are aliens in need of attack :mrgreen: I don't think they yet know about root causes. There's often a genetic predisposition and then a trigger but I think the triggers can be many and varied. Interestingly, a few women start with it after a pregnancy. I say 'interestingly' because that suggests, for them, a possible hormonal cause and, for you, there would be hormonal things going on after chemo. (Did you, like me, go through an early menopause?) Also, on the hormonal front, it's quite common for arthritis to disappear during a first pregnancy. Mine did. Came rushing back afterwards and never left during my second. It's a strange beast. I know there was some research going on years ago as they tried to harness whatever it was that sent it packing for nine months but I don't think anything came of it.

    Hopefully, you'll be able to build up on the meth again. Four (10mgs) is still a low dose. I was on it for years but was taking 22.5mgs at first. I also take hydroxychloroquine with it. Is it only the meth causing high BP or did you have it previously? Can you try tackling it with diet and exercise? I think arthritis doesn't lend itself to a healthy BP as we aren't as active as we might wish but, by eating healthily and exercising regularly, we can try to keep it in check.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I was born with an over-active immune system so for me developing psoriatic arthritis was not as much of a shock as it could have been. Developing the osteo, however, was because I naively though one could have only one or the other. Twerp! :lol: Pregnancy can be a trigger for the onset of an auto-immune arthritis but, truthfully, no-body knows why a previously well-behaved immune system can suddenly mis-fire.

    I didn't take FA for years because I slipped through the prescribing net, I now have it but routinely forget it. :roll: Have you tried taking the tablets in the evening? That may enable you to sleep through the initial 'yucky' stage which could help matters. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mclean70
    Mclean70 Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi again
    I am on my second week of the halfed dose of methotrexate (x2 tablets ) I was not too bad with side effects last week on this dose. BUT this morning after taking them before bed, along with my stomach tablet lansoprazole, I have been terrible again. Dizziness sick and bad upper stomach pain.
    I have just noticed after googling that you should not take these two drugs together.
    Do you think I am just no good on the methotrexate tablets even on such a low dose? Or do you think this reaction was because of the 2 drugs together?
    Thanks

    Sent from my SM-G900F using Tapatalk
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    I always take my omeprazole, another PPI, first thing in the morning not at night. Mind you, I take my meth in the morning as well but I take that at breakfast not first thing.

    We use very small doses of meth for arthritis and you are on an exceptionally small dose. I've taken meth and omep for years with no problems. I'd guess your problem was because you took both together.Try separating them by several hours but, if in doubt, ring your rheumatology helpline.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I have never taken different meds at the same time apart from my BP medication, I do those two tablets together: it's the same with my injections, I do those at least forty-eight hours apart. It's best to leave at least two hourse between medications, always take them with water (other liquids can break down tablet coverings too fast) and, unless the instructions say not, a little food too to lessen the inpact on the stomach (by little I mean a cream cracker or something equally plain). DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mclean70
    Mclean70 Member Posts: 14
    edited 30. Nov -1, 00:00
    Thank you both for the advice.[emoji4]
    I was quite surprised how bad I felt yesterday considering the tiny dose. Later in the evening also had teribal headache. Paracetamol made no difference. So went to bed early. My stomach /head is still a bit upset today.
    I have tried to call my rumatoligist nurse. Just an answer machine.
    I will definitely plan to take my meds times apart in the future .
    But I am not sure if the meth tablets are for me. I could try the injection to see if I am any better on that, before ruling it out totaly and moving on to another drug type.
    Will see what the docs. think.



    Sent from my SM-G900F using Tapatalk
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    I hope they get back to you before your next dose is due. Try ringing again. Be sure to leave your own name, phone number etc.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran