Folic acid when taking Methotrexate

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Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1994
   Posted 12/8/2016 11:29 AM (GMT -7)   
I am trying Methotrexate to see how I get on with it but I am actually having more problems with the folic acid I am having to take. I was told to take 5mg a day but that has proved to be impossible as I have felt nauseous and sick after taking it, and then I have no energy at all and have to sleep...it is high in salicylates and I have a SEVERE problem with salicylates. I have reduced it to 1mg a day in the hope that will help.

So my question is, is it absolutely necessary to take this?

Could I just take one dose once a week, and have done with it.

Is there something else that I could take similar that might not cause me problems.

Thanks alot
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Had home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Started smoking 5 ciggies a day.
Had to go back on Prednisone due to stopping Azathioprine, looking at other Meds at the moment.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 12/8/2016 3:58 PM (GMT -7)   
Hi Samantha,

I took FA for quite a while and my Doctor didn't prescribe it until I complained of severe fatigue with MTX so I would think that it is not an absolute necessity. It did help in my case.

Many who are prescribed MTX don't know a thing aout the FA until they ask here about the side effects from the MTX in fact.

I would just call the Dr office and let the nurse know that you are trying to go it without the FA just so that they are aware before your next visit.

Hope the MTX helps. I was on it for the last 3 years or so and after a year or so on it it aggravated some upper GI issues I have as well as gave me extreme problems with low stamina, fatigue, and very short of breath. We all are different of course and many dont experience these side effects but it is something to be aware of.

Take care! -Don

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1994
   Posted 12/9/2016 9:13 AM (GMT -7)   
Thanks Don, thats interesting and worth knowing.

The dose I am taking at the moment is 4 tablets once a week, which amounts to 10mg. My doc wants me to up it to 6 tablets a week. I am not going to do that, and will discuss it with him when I see him in a couple of weeks because I believe that dose should be enough for my level of spondyloarthropathy, that's what I am feeling anyway. I can't honestly say that I have been in pain every day, nothing like that, I have had some mild joint pain the worst being a swollen ankle, but thats it.

I looked on Drugs.com and note that the dose for rheumatoid arthritis is 7.5mg once a week, which is lower than what I am on, but of course I am hoping this drug might work for my ulcerative colitis as well, although its used more for Crohns disease, but I will just have to see.

Basically I am trying MTX because of my allergies, whatever I take, be it food, supplements or medication they all turn on me due to the fact that I have to take it every day, my body cannot deal with it and so the fact that I can take this drug once a week might just work for me..I have multiple chemical sensitivity as well which just complicates everything.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Had home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Started smoking 5 ciggies a day.
Had to go back on Prednisone due to stopping Azathioprine, looking at other Meds at the moment.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 12/9/2016 11:57 PM (GMT -7)   
Hi Samantha:

I was on MTX for many years and wasn't using FA for quite a few years before anyone mentioned about FA. As Don noted, it was here that I heard of it also. I asked my Rheumy about it and he said, "Sure you can take it. Are you having side-effects from the MTX?"

As a matter of fact, I was. I guess I should have mentioned them. I had hair loss/thinning, sores in my mouth and food didn't appeal to me. I have Type 1 Diabetes, so food is important usually. I didn't feel nausea but I just didn't have an appetite. That is probably why I didn't have any weight-gain during the times of higher dose Prednisone use plus my RA wasn't in total control.

I had to quit the MTX 3 or 4 years ago, since it was reacting against me. It was also in the news that the company in India was shut down due to them putting in wrong ingredients. I had also started Rituxan around the same time. So who knows. North America should NOT have their medications made or purchased in poor countries. There is no excuse except greed.

My Rheumy and I had a long chat during my appointment last month and we both thought that I should try MTX and FA again. The MTX would be injections this time. The last years was tablets. Oh darn, I had gained some of my hair back, now I'd lose it again. :/ He also upped my long and short acting Morphine. I didn't find that the FA helped with much. I also tried the Magic Mouthwash for the mouth sores. Not much Magic going on here. It removed the sores from my right side and then I got them on the left side. WOW! Something did get rid of them though. I'm thinking it was the Rituxan.

So sorry that you have sensitivities on top of everything else.

If you do not mind reading a lot, these may answer some of your questions. Granted, the participants in the studies were not too many.

http://rheumatology.oxfordjournals.org/content/43/3/267.full

http://www.arthritis.org/living-with-arthritis/treatments/medication/drug-types/disease-modifying-drugs/methotrexate-side-effects.php

Good for you trying to quit smoking. Keep trying Samantha!! My hubby and I started smoking due to peer pressure when we were kids. I quit through the years 26 times and my hubby 21 times. Me for as long as 10 months. It's been 12 years for both of us. The day of the Tsunami Dec. 26 2004. Won't start that bad habit again. Good luck...You can do it!!! :)
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - Dry Eye - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - long acting Morphine - short acting Morphine - Salbutamol - Prednisone - Humalog - Tears Naturelle II - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 12/10/2016 12:18:23 AM (GMT-7)


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9657
   Posted 12/13/2016 8:29 AM (GMT -7)   
Seems like the folic acid your on is a high doseage, I was onn the 1 mgs. Every other day, it does help with hair loss...my reactions were to the mtx and not the FA..some doctors say not to take the folic acid on the day you take the mtx...maybe do what your comfortable with and tell your doctor and if your doctor is not listening to you then find another doctor...this doctor works for you and you need one that works with you for your better overall health...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1994
   Posted 12/13/2016 6:40 PM (GMT -7)   
msOuchie....Thanks!, although I hope I don't start to lose my hair, that might be a deal breaker for me! as I look like crap at the moment with dark rings under my eyes, and chipmunk cheeks, plus I have a front tooth missing lol!! (waiting on new tooth in January) after dental implant. Honestly, I used to walk down the street and get some appreciative looks, and now I just hope I don't bump into anyone I know, I dont think they would recognise me..thats what happens I guess with this disease, you end up putting up with so much because you know you have no choice and have to take the Meds. I will look at those two links you posted!

Chartreux...I am going to take the FA on the day of the mtx because last week I felt like crap throughout the day when I hadn't taken it, also I am now thinking maybe I might ask about the injections, but that could be a problem for me too, because I have to take little and often of everything, and the injections are probably a high 10mg dose, whereas the tablets I can take 2 in the morning and 2 in the evening. Did you lose much hair?
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Had home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Started smoking 5 ciggies a day.
Had to go back on Prednisone due to stopping Azathioprine, looking at other Meds at the moment.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9657
   Posted 12/14/2016 6:08 PM (GMT -7)   
The injections can be a low dose. So no you do not have to start out at 10 mgs. The injection gets into your system faster, because its not going into the stomach to break down. Your doctors office should show you how to do the injections, I was never on the pill because I had two actual stomach bleeding ulcers dx by endoscopy in 1994...not the h.phlorei type, so my doctor was afraid to use the pills. I went from .3 for a few weeks to .4 for a few weeks to a .5 . For me the hard part was filling the syringes because I have carpel tunnel in my hands, so I would shake and I drpped it onçe, so if you can get the pre filled its easier...hope this helps...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 12/16/2016 10:06 AM (GMT -7)   
You may find that the day after you take the MTX you are severely fatigued. I dealt with this and it was really bad for me sometimes lasting 3 or more days even while taking FA.

Really pay attention and make sure that you understand the side effects that you can experience on it. After a few years I began having alot of problems with shortness of breath and no stamina. I couldn't walk 100 feet (with a cane and walking very slowly) without sitting down to rest. I was taken off of it 6 weeks ago and I already have noticed a bit of an improvement. The downside is that my pain levels are higher now and I have more swelling and inflammation again. I can live with it for now. I just hope it doesn't get worse.

My dad took it and called it his miracle drug. He too had RA and said that the MTX for him made it so that he could at least get around and participate in life a bit.

I hope it works well for you. -Don

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1994
   Posted 12/17/2016 11:36 AM (GMT -7)   
Chartreux..thanks for that, it is worth bearing in mind, and definitely helps.

DonD........I actually have Spondyloarthropathy, a form of arthritis linked no doubt to my Ulcerative Colitis. I have read that MTX can work well for a few years and then not! which sounds like what happened to you, I don't have a problem with that, if I can just get stable for a couple of years on something I will be happy, I failed Pentasa, then Azathioprine, both times through allergic reactions and so I am desperate for something to work so that I can come off the Prednisone as well.

Merry Xmas everyone!
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Had home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Started smoking 5 ciggies a day.
Had to go back on Prednisone due to stopping Azathioprine, looking at other Meds at the moment.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 12/20/2016 1:16 AM (GMT -7)   
Merry Christmas to you as well Samantha.

It works for me, I definitely have less inflammation and swelling on it but the side effects have gotten worse and worse to the point it's gotten pretty concerning. I pray I don't have another major flare being off of it. I've been flared up bad these last couple weeks. sad

BadDay
Forum Moderator


Date Joined Jan 2011
Total Posts : 1046
   Posted 12/20/2016 9:58 PM (GMT -7)   
Hi Samantha it's good you have checked into the drugs so many people don't do that
I was on Folic Acid but needed more so went on a different drug leucovorin 15mg once a week
and this seems to work for me
not sure if you said what dose of Methotrexate you are on ?
be sure to contact your Doctor or whatever health support you have to see what you can do.
FORUM MODERATOR Rheumatoid Arthritis for 30Yrs. Asthma,Fibromyalgia,Osteoperosis,Cervical Spondalosos,Degenerative Disc Disese,Disc Bulges, Diabetes,Heart SVT & AF, Sleep apnoea,Nocturnal Respiratory Failure,Panic Attacks,Anxiety
on; Methotrexate , Arava , Endone, Targin 20mg (oxycontin) , Prednisone, Metforman(Diabex) , Tambocor. Oxygen & Cpap, Prolia Injection ,Lyrica

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1994
   Posted 12/24/2016 11:15 AM (GMT -7)   
BadDay..Thanks, that's good to know about the leucovorin, I am taking 1mg folic acid tablets now, spacing it out throughout the day and I think that's working better for me now. I was started on 10mg Methotrexate, and a couple of days ago I went up to 12.5mg, all seems okay at the moment, except I have noticed that I have had a couple of problems with foods that are normally okay for me. I have multiple chemical sensitivity, and therefore my diet is very restrictive, so I hope I am not going to be having problems with the foods that I can eat..for example Water Kefir is very important to me, I need to take that probiotic to avoid a reoccurrence of Colostrum Dificile, and yesterday I reacted to it, and my face cream (Nivea) which I have worn since I was a young girl started to smell strong to me, (I have to wear a nose mask when out shopping due to all the airborne smellies that people wear) I just hope this passes and I am okay to take this Medication, as eventually I need to be on 15mg I think in the hope that it might work for my ulcerative colitis as well.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Had home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Taking Methotrexate 10mg weekly and on 10g of Prednisone at the moment, hoping it will work for me.

Carn13
New Member


Date Joined Jun 2017
Total Posts : 3
   Posted 6/18/2017 4:23 PM (GMT -7)   
Hey Poppie,
I hope things settled down with some success for you. I haven't heard all this talk of hair-loss on methotrexate anywhere but this forum. As a 50yr old male I figure I can accept it if it happens,
I am a novice, only had RA about 10 months. However the onset was a grim and distressing time!
Been on methotrexate 7 months now (started orally at 20mg, went up to 30mg, then in the last couple of weeks been on 20mg subcutaneous, using preloaded syringes). The whole while the mtx regime has been mtx Monday, Folic Acid Friday (5mg).
I've been hard pressed to distinguish feeling particularly foggy-headed following mtx - fatigue has been overwhelming at times since before I was diagnosed although it has improved but I have not picked up on a pattern to it.
Last time I saw my rheumatologist the options to choose from were whether to persevere with mtx, which was having only some success, but switch to injection, or move onto leflunomide. I was ok with seeing whether the injections would be more effective. (So far they have not been, but just 2nd week as of today). I was also reluctant I due to having to learn a new set of potential side-effects etc. Having a persistent nausea reaction using sulphasalazine a couple of months ago, another change did not appeal.
All the best.
RA. Subcutaneous Methotrexate, Hydroxychloroquine, Naproxen.
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