My methotrexate saga: Here I go again, got to 12.5mg... - NRAS

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My methotrexate saga

Titchyj profile image
26 Replies

Here I go again, got to 12.5mg and due to side effects have to start again at 7.5mg. Not happy as I am having so much pain and can't take my naproxen because of my asthma playing up. Can only take paracetamol for pain, my fibro is playing up too, not in a good place at the moment.

Sorry for venting, no one else here to talk to, husband in work and he's not the best for sympathy so tend not to say too much about how I'm feeling.

Jan

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Titchyj
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26 Replies
Barrister profile image
Barrister

Hi Jan, I've just started MXT ( 3 weeks ago) on 7.5 mg for another week then see doctor. I've had some side effects which were mild at first but gradually increasing. So I understand where you are coming from. Pain is so draining. I do hope that you get some relief soon. Clemmie

Titchyj profile image
Titchyj in reply toBarrister

Hi Clemmie, sorry you are suffering too, hope your Dr can help you, I've been taking the Folic Acid , but it doesn't seem to make any difference.

Good luck

Jan

choccy1 profile image
choccy1

Hi,

I was on 20mg of methotrexate for my Rheumatoid Arthritis for a year and it made me feel bad and badly affected my liver. So I started researching links between diet and autoimmune diseases and found a lot of stuff mainly on youtube from various doctors about how diet is linked to a whole host of diseases like diabetes, crohns disease, arthritis, skin disorders etc. I have now followed a special vegan low fat low protein diet supplemented with vegetable juicing for two months and am off all my medication and my arthritis is slowly improving. If you are interested go to youtube and look at 'Clint Paddison Rheumatoid Arthritis cure', 'John McDougall The starch solution', 'Fat Sick and nearly dead' and various videos by John Bergman. A lot of them propose that if you feed your body the right foods the body has an amazing capacity to heal itself from all sorts of diseases.

Titchyj profile image
Titchyj in reply tochoccy1

Hi Choccy1, I have diabetes, RA, OA, Fibro, Asthma, Lichen Sclerosus, Sarcoidosis in both Lungs, IBS, Dry Eyes, Lipomas, hiatus hernia, high blood pressure, high cholesterol, GERD, slight emphysema, sleep apnea, plus due to the steroids I am now 3 stone heavier.

I don't think there is such a diet that would help me with this lot, but do agree that somethings could possibly help and will look into it, but not holding out too much hope. I am, as you can imagine, on a lot of drugs and would love to decrease the amount that I take.

Thanks for your help, will do some research and see what i come up with.

Jan

matildaa profile image
matildaa in reply tochoccy1

Hi Choccy1. I have had similar experience. I found that the only thing that helped my pains and swelling and also lessened the side effects of the RA drugs is a vegan diet with no sugar, wheat or processed food, with lots of veg and salad. I am not sure if the low dose of methotraxate or the Hydroxychloroquine has any effect on my RA symptoms the diet however has made a huge difference and it was almost instant. I feel so much better and my next step is try and get off the drugs. I am now officially in remission.

Within a few days of cutting out meat and cheese and eating lots of veg and salad I started to feel so much better I strongly recommend anybody to try it!!

DDavies profile image
DDavies in reply tochoccy1

It's all relative. I've been on 20mg of methotrexate for RA some 18 months now, and yes there are side effects but couldn't do without it. I've been vegan for 10 years and vegetarian for about 25, so way before my RA was diagnosed. Of course diet is important for our general health and well being but I do not believe that it has such an impact that it could alleviate my RA, if that were the case then I should not have had it in the first place!

pm52 profile image
pm52

Hi Jan,

Sorry to hear you are in so much pain. It is really draining and can get you down. I was on 20mg methotrexate but was feeling sick a lot and my neutrophil count was very low. they reduced it to 15mg but by injection. Nausea has gone now. Maybe you could try the injections instead. Can your GP give you something stronger for the pain? I have tramadol and dihydrocodeine if its bad or high dose co-codomol generally, cannot take nsai's due to kidney problem with them. Hope this helps.

Titchyj profile image
Titchyj in reply topm52

Hi pm52, thanks for your reply, the rheumy nurse and consultant have suggested I go back to 7.5mg and increase as before and if i get the same side effects they will either try another DMARD or injections of methotrexate, just have to wait and see.

As for strong pain meds, I have tried most and cannot tolerate them, so I take the max dose per day of paracetamol, 8 a day, have done this for years for the Fibro. Naproxen help a little, but then upsets my Asthma. Catch 22 me thinks!!!!

Jan

emmajj1971 profile image
emmajj1971

I cut out all red meat and thought that it was helping, it might well have been. The Dr advised to give up smoking cause it can make RA worse so i gave up about 5/6 years ago and my RA has been on overdrive ever since, when i said to my new Dr he said yes we find that often happens. I think its trial and error dofferent things work better for some than others but cutting out red meat is one i would recomend to start.x

Titchyj profile image
Titchyj in reply toemmajj1971

Thanks emmajj1971 for your reply, I gave up smoking about 14/15 years ago, don't know about the red meat not being in my diet, but worth having a go, hope your RA gets sorted soon.

Jan

grace37 profile image
grace37 in reply toemmajj1971

Funnily enough my ra started not long after I gave up smoking, was a heavy smoker. Wasn't feeling great after quitting but thought it was my body detoxing at first. Should we start smoking again??????

emmajj1971 profile image
emmajj1971 in reply tograce37

No dont start smoking again. One Dr i was under kept on at me to stop so i stopped and he finished and i had a new Dr when i told him he said it often happens that once u stop smoking you get worse. U probably had it already but after giv ing up it got worse.

grace37 profile image
grace37 in reply toemmajj1971

hadn't really intended to start again after nine years, but not allowed any alcohol cos of tb treatment which over here is for nine months, 4 down 5 to go. So get a little bored every now and then.

grace37 profile image
grace37

I found that the injections worked so much better than pills with a lot less side effects. Had some nausea the following day for a while but that is now gone. I am on 30mg per week since last June and almost pain free, have started biologics 2 months ago so will be decreasing metex from now on. Now that I'm almost back to normal will go back to researching natural healing methods. The only blip on my liver so far was taking treatment for TB but that only lasted a month. I haven't eaten red meat for decades but still got the worst case of ra you could imagine.

mille profile image
mille

if you increase the folic acid It can help with side effects. You can take it every day except day of mtx.

in reply tomille

Hi Millie, I know treatments are different here in Florida. My rheumatologist has me taking 2 mg of folic acid and day. I think it's too much so I take it every other day. I don't have any side effects from the methotrexate however I just got out of a horrible flareup. Actually I think I have a few days left of this flareup. Maybe more folic acid does help for side effects. However, I wouldn't do that without talking to you Dr

mille profile image
mille in reply to

Hi Abby, I was prescribed 5mg of folic acid once a week (3 days after mtx) although some people with side effects have been told they can take it more often. I hope your flare passes soon. How lovely to be living in Sunny Florida. xx

Titchyj profile image
Titchyj

Hi Mille, I have done this, but no better, still dizzy, nauseous and diarrhoea daily, I have to take Imodium if I need to be somewhere, like hospital appointments etc., but thanks for your reply any help greatly appreciated.

Jan

mille profile image
mille in reply toTitchyj

That's not so good Jan, I don't know if the injections would be better for you or else perhaps something else. I take mtx along with rituximab etc and to be honest I don't think the mtx help me. Hope you get sorted out soon. xx

Titchyj profile image
Titchyj in reply tomille

Thanks Mille, just have to wait now ad see what happens.

Jan

gilox profile image
gilox

Sorry to read about your pain,I too was taking 12.5 mtx & was fine for a couple of years,but then had the most awful mood swings, am now on 7.5,& thankfully I'm not too bad pain wise,& the O H is a lot safer now!! If I do get a bad "flare" I can take 5mg pred. Can you take ibuprofen? I find it does help with the swelling,not for everyone I know,but it may help.rally do hope you will feel better very soon. GillianX

Titchyj profile image
Titchyj in reply togilox

Hi, Gillian, I take 7.5mg of prednisolone daily, I am unable to take ibuprofen, naproxen is good, but upsets my asthmas.

Thanks anyway for your reply greatly appreciated.

Jan

Susiej38 profile image
Susiej38

Hi Jan,

Dont know if you are on pills or injections, but I am on injections. My Rheumatoligist strongly believes injections do not have as strong side effects as pills. Hope this might help you.

Titchyj profile image
Titchyj in reply toSusiej38

Hi Susiej38, I am on the tablets at the moment, but they may put e on the injections or change to another DMARD IF i keep getting the side effects.

Thanks for your reply.

Jan

Hi Titchyj, are you taking the pills or injection? That tells me he's very sick I just couldn't take it. Now I'm taking the injection 15 mg a week and no side effects. I guess it bypasses my stomach and intestines so I don't even know I have taken it.

Titchyj profile image
Titchyj in reply to

Hi Abby11, I am on the tablets, but if I keep getting the side effects they will either change to another DEMARD or injections.

Thanks for your reply.

Jan

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