Good day everyone! I started my Methotrexate last Saturday and other then fatigue which I have been dealing with all week and slight nausea- it actually helped ever so slightly on the first dose. However, my fear is that the pharmacist told me that the second dose is when the allergic reactions that can be serious can start. I was hoping that if I took the first dose I and lived I would be ok. I know there is ongoing blood work but I am more worried about the onset of severe allergic rush to the doctor dose. The research I have done also states you can stop taking it without weening yourself and it is out of your system in a week. If that is correct why is there a risk of allergic reactions the second dose? I am pretty confused and to say the least very worried about taking it tomorrow. Please help and chime in with your advise and personal experiences. I need real help. Thank you!
New to MTX 12.5 weekly and very scared!: Good day... - NRAS
New to MTX 12.5 weekly and very scared!
I'm not sure your pharmacist is quite understanding your fears. Yes allergic reactions can build up as once you've been exposed to X, your body develops immunoglobulins and then reacts once it is exposed to X again. (And that's why the fact that the first dose has completely left your body is irrelevant).
In general though you do get a sign first and there is a slow development so time to react and reverse the problem before it gets too severe. It can be horrid, there is one person on here who suffered badly from Stevens- Johnson syndrome but is fine now.
It sounds like what you are worrying about is anaphylactic shock? Which is sudden and severe allergic reaction, but I think is triggered in a different way. Anyway this is very, very rare with low dose Methotrexate. Yes it has happened but I believe all the cases were either people taking high doses by infusion for cancer treatment or those with other severe problems such as kidney disease which increased the toxicity of MTX.
So try to be positive that your first dose was totally fine, and look forward to it helping your disease. MTX is my best friend now - it gave me my life back. And yes I was scared before I started taking it, but I think that's a normal reaction!
Is the allergic reaction likely after you actually take the second dose? and I have no idea if something is seriously in need of the ER. I have noticed that I am itching today and last night.
Nobody warned me of any side effects or allergies to any of the various drugs (including MTX) I've taken over the past 32 years of treatment. And I've never had any. Perhaps being forewarned isn't always a good thing.
I'm not a doctor, so I can't tell you for sure whether or not its likely. All I know if that in 8 years on this forum and readimg posts from hundreds and hundreds of newly diagnosed only one person has had a significant allergic reaction.
In general if something is in need of ER then its usually pretty obvious, so don't worry as you'll know.
Dear turtlemom2,
I read a lot before I started mtx long ago, so I was very worried also on the side effects. Unfortunately, I did have below side effects: -
nausea,
vomiting, upset stomach, tired feeling, blurred vision, chills, body aches, flu symptoms, pale skin and diarrhea.
Bad diarrhea after the very 1st dose. I vomited badly at the same time. I could not go out for 2 days. It subsided after I took some antibiotic.
The other side effects above subsided gradually. Some after about 1 1/2 years but vomiting subsided when the dosage went down to 7.3 mg a week. Unfortunately the blur vision stay on until today. Now I have been diagnosed of cataract and will be scheduled for operation.
Anyhow, I am in good condition and I am in remission since after 1 1/2 years of treatment. Not everyone reacts the same way though, you may be okay with mtx.
Amy
Amy were all your side effects proven to be because of the mtx? If antibiotics cleared up your symptoms then that would suggest they weren’t side effects just a coincidence and the blurred vision was because you were developing cataracts not from the mtx? Correct me if I’m wrong on this but it’s how it reads and I think you might have scared turtlemom2 even more than she was already by saying those symptoms were all from mtx. Quite a horrific reaction if it was , can I ask why you didn’t stop taking it and try something else? Please don’t take offence, I’m just curious 😊
Dear Kittyj,
I would like to have open discussion here as we all have different experience with mtx and RA.
The bad diarrhea and vomiting after the first dose of mtx issue, my doctor said that mtx would reduce my white blood cells tremendously hence my body reacted that way. He said that my body needed time to accept the medicines. However, it may not apply to all RA patients.
Why I stayed on with mtx and arava though I experienced so horrible side effects? I complaints to my rheumy, she told me that the benefits I would get would be very much more than the side effects, she told me to bear with it and I am the kind who listen only to my rheumy and no body else. I think it proved right as my condition was under very well control after about 1 1/2 of treatment. Guess what? Those days when I looked at mtx, before I took them, I started to vomit. That kind of horrible feeling with mtx. However, after my rheumy reduced the dosage slowly, I was/am okay with mtx already when the dosage reduced to 7.5 mg.
About the blur vision, the eye specialist told me that the steroid that I took would cause cataract and the side effect of RA would cause blur vision. So I am not sure which is which so I cannot provide any answer on that but merely expressed my own experience. Whether the blur vision has anything to do with cataract? I am not very sure of this.
I would like to say that I am a very lucky person to be under remission without any joints damaged though I do experience the difference in my joints. I can feel the tighter joints movement on my fingers and the clicking sound when I move my joints. No replacement and so on until now. I asked my rheumy if I would stay the same way until my dying day? He said normally when one is under remission and continue the medication, normally RA problem would not come back. I am not sure if this is true but I hope very much it is. I am okay to continue the medicines than to be back into RA pain in my joints again. Oh, dear!!
Amy
So as the antibiotics cleared the vomiting and diarrhoea problem and cataracts cause blurred vision it wasn’t the mtx, is that correct ? Just trying to allay any fears new users may have because your list does appear horrific, especially for 1.5 years 😮
The antibiotics cleared the diarrhea problem but as for the vomiting, I continued with it until the mtx dosage was reduced to 7.5 mg. As for the blur vision, I am not sure if it is due to the cataract or because of steroid or mtx.
Amy
RA can go into remission. Kind of. What is really happening is that the medication is keeping your immune system at bay so you feel better and your joints get a rest. However, I had a client one time disfigured the disease and she said she had taken her meds and they worked. She also said that after 10 yrs of taking the meds they suddenly did not work. She said after that time your body stops responding to the medication and becomes resistant. I am not sure if this is for everyone that it happens to. She became disfigured. R A never goes away it is always there but it can be kept under control.
Dear Turtlemom2,
In fact I did read the same online hence I asked my rheumy if there is any exceptional case? Might be he just wanted me to have a positive mindset to fight the disease which I like to believe him so that I could live as normal life as possible.
One thing I like to say is, since I started the DMARDs in July 2015, I had flu only once at the very early stage. Beside the diarrhea which I took antibiotic, this flu made me took another round of antibiotic. Since, I was very healthy though many of my colleagues around me got sick regularly.
Sometimes I think if it was due to my immune system was too high caused the RA problem?? I was hardly sick before I got RA in the past years, after the DMARDs for years, after remission, I continue to be healthier than many other normal people around me.
Amy
Hiya turtlemom2, welcome. I've been on MTX injections 9 years after a year on the tablets. I think what we may have here is a difference in countries' advice? Are you in the UK? It's just here I've never heard of this advice being given, I'm sorry it's scared you. Whilst it's true side effects can increase the longer you take any med due to it's build up in the body to say it's that the second dose is when the allergic reactions that can be serious can start isn't common. I find it odd actually, even more so because it's affected you so much you're worried to take your second dose, I'm not sure had I been told this I'd be asking any further advice from him/her. It's advisable to be aware of the more serious side effects of course but I'd recommend you do as I did & turn that thought process round to thinking this med has been prescribed to help you & there's no reason you'd be any different to the majority of people who are prescribed it for their RD & if you have any they are very few tolerable side effects.
Folic acid is prescribed to help ease those related to folate deficiency so they should be eased, even sorted, but serious symptoms are by comparison to the many who take it thankfully rare. I'm prescribed 5mg every day except MTX day & am just a little tired & have less appetite the day after so I just don't arrange anything important if I can avoid it . As long as you remember it's a once weekly med & should you have any problems your Rheumy can act on them with you having regular drug monitoring blood tests. Drinking plenty of water helps as does avoiding alcohol, certainly until your bloods say you're ok to.
There's no doubt it's a serious specialist med, it's not aspirin although that has quite a long side effects list too, no med is without them, but you've been diagnosed with a tricky disease which needs bringing under control, all the DMARDs & biologics we need for RD are specialist meds. You should have been given a leaflet on MTX before you left your Rheumy appointment but if you weren't this may help in giving you further information versusarthritis.org/about-a...
As you're aware you can just stop it if you do experience intolerable or serious side effects, no need to taper off it so if you are unfortunate enough it low dose MTX it should be leaving your system in 3 days, from experience totally by 3 weeks. If you're in the US I've read they may use leucovorin (folinic acid) if it's necessary should there be serious side effects.
I do hope it works as well for you as it has for many here, myself included, though forums do tend to be used by those not doing so well & may give a false impression. Lots who like yourself join & questioning their newly prescribed meds are now just getting on with their lives & find they no longer need the support that this forum gives so well. There are those of us who are getting on fine & choose to be here though. Keep posting so we know how you're doing. 😊
Thank you! I am in the U.S. and I am on the tablets. I handled the first one well and I can walk without limping. Yay! I am just really sensitive to meds. The first one was plaquenel and I swelled badly. So far so good with this one. Every since then I have swelled every evening even though I am on a directic daily. Guess I just nervous.
Can you change to injections? You may not get they digestive issues with injections.
No I am leaving for work in two weeks and will be far away from my doctor for a month in a half. maybe when I come back. I come back every Friday evening but no one open to give injections.
It's good you think you're responding to it already but try not to expect miracles straight away as it can take around 12 weeks to be fully effective, in common with all DMARDs it's not fast acting. In the same way as side effects it takes time to build up in your system.
I think all you can do is see how it goes. I'm sorry you reacted to Plaquenil (hydroxychloroquine), it was my first DMARD too. It's understandable you're nervous but fingers crossed you have nothing but good results from MTX.
You're not taking any supplements are you, nothing other than your prescribed meds, diuretic or others?
Nope. If it is not perscribed I do not take it. I only take the 1 mg folic acid and my other meds. I am extremley sensitive to meds. It's odd I know. I can't explain it.Doc said some people just are. I am rh- some say that could be why. I just know I am.I am happy I have felt a small change. Anything helps.
You're right, anything helps. Not easy though when you're sensitive to meds, I live with one! Finger's crossed you're ok with MTX, you do at least have the option of changing to subcut if tablets cause problems but let's think positively.
Do stop worrying....In 3 years reading this site I honestly can’t remember anybody being bluelighted to hospital because of Methotrexate.
I took it for 7 years & had no side effects at all....just blessed relief.
Yes some people do have nasty side effects...but all of us who took it very successfully should probably write in more saying how effective it can be....it honestly gave me back my life.
So please just look forward to many happy years taking it....don’t worry yourself into a tizzy about something that will probably never happen!
Happy Easter
Thank you! now I am excited to take it. HAPPY EASTER!!!!
I've been on Mtx for a number of years. All it was at first was feeling slightly nauseous for a day or two. When it starts to work it's amazing it really is. Battle on Turtlemom2. X
Thank you for the reassurance! I actually felt a difference later part of this week. Again, I am pretty sensitive to meds.
I was scared in the beginning too. But I was in so much pain I had to try something. I have had. I have had stomach issues all my life so I tolerate what I get from MTX. I get nausea but again tolerate. I’ve been 14 months on it now. Now I’m scared to try the MTX injections. Are we silly or what? God bless us, everyone!
If you are on the tablets now why do the injections? Also, I have heard that the injections are more tolerable. I myself have IBS so I am use to the side effects of that part of MTX. It's the throat closing kind of stuff on the second dose I worry about. Did you find the second does did anything different then the first?
Sorry for the delay. Busy week. Then got sick.
I found no difference with the second dose of the pills. After 14 months on tablets my pain is still with me. Better but still not great. That is why shots were suggested. Also, some stomach issues with pills would no longer be there because injections in the thigh bypass the digestive part and go right into your blood stream.
Sorry BonnieT! I do hope it gets better for you. So far for me the pills are doing pretty good.
I was only on 6mg weekly (injection) and during the 4th month my long blond hair started falling out in globs! Stopped that real quick! Only on Xeljanze now & that seems to be working just fine without the methotrexate! Thank God!
Maybe check with a reputable source as to what MTX is capable of. I've never heard of allergies being a problem although some here may have that, but side effects - yes - in some people. It takes a very long time for MTX to show up as helping, months for me, and when you stop taking it, it doesn't leave you for about about 3 months. That's my research talking since I am on MTX for 5 months now and just starting to feel the benefits. I've never stopped it.
So far I'm on 15 mgs which was increased from 10 mgs about 3 months ago. I told my doctor that I wasn't having any side effects, and he said, "Well, you don't HAVE to have them you know" 😁
Worst thing for me is the stress of fear causing my RA to be worse. Also, mind over matter can play havoc with you too. Patience for Dmards to work is key it seems.
Did you take your second dose yesterday? And did it go fine as we expected?
I took it Saturday before bed. The next morning I woke feeling pretty good and then later that day I got sick to my stomach and really tired. The exhaustion comes and goes all week it seems on the first week I took it. One minute I am fine. The next I am wiped out. Today pretty nauseus and tired. Luckily today is a state holiday and I am off. I also notice my eyes are blurry. Otherwise I am ok though. Stiffeness and pain are at a minium. That a good thing!
The woozy feeling should get less and less each week. These days I have an extra hour in bed the next morning and then all’s well.
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