Methotrexate side effects

[VronMc]

Hi there. I’m new here – I’ve been reading for a few weeks but this is my first message. I was diagnosed with rheumatoid arthritis recently, on top of the osteoarthritis I’ve had problems with in both knees for the last four years. I’ve had five weekly doses of methotrexate so far. I haven’t had anything too bad yet in terms side effects, just a bit of dizziness, a mouth ulcer and a small rash, and I’ve been feeling even more wiped out than usual. I have discussed these things with the rheumatology nurse who doesn’t think I need to worry too much. But I wanted to ask here whether methotrexate side effects are likely to build up and get stronger over time? I have had drugs before where the side effects came on strongly right from the start and then subsided over time, but I’m wondering with methotrexate if it might be the other way round. If you get side effects but remain on the drug do you eventually get used to it and stop noticing them?

[Juliev320]

I have been on for less than two months. I feel,the side effects are getting better. Dr. Increased my folic acid,though, and I take all five pills at dinner and drink tons of water until bedtime. Feel out of it the next day. Sometimes get bad headaches, it it is getting better. Hang in there

[helixhelix]

With each of the DMARDs I'm on it was tough for the first few months, but then I got used to them and/ or the effects wore off. I think MTX took me a few months to come to terms with, hydroxy was quicker and Sulpha was horrid to start with! I'm still sun sensitive, but apart from that it's all ok.

[nomoreheels]

Hiya VronMc & welcome. I'm pleased you've decided to post. I also have both RD & OA, both diagnosed together back in 2008 when I was 48. I also take MTX, nearly 8 years, 7 of them on injections. I recently needed an increase to 20mg but asked to go back to 17.5mg. On that dose I'm just a bit more tired & have less appetite the day after but on 20mg that stretched to 4 days & I also had a bit of hair loss but all's settled down again now. From experience it's one of those meds that your body needs to get used to & once you've been taking it a while normally side effects lessen. I do believe though that some people have a limit, mine as you've probably worked out is 17.5mg by injection, any higher not only do I have more days of side effects but my liver also objects. Keeping hydrated helps.

If you have mouth ulcers ask if you should have an increase in the days you take folic acid that often does the trick. You could try using Corsodil mouthwash too.

[VronMc]

Thanks everyone for the replies and advice, which are much appreciated. I'm on 15mg of methotrexate, and taking folic acid on the other 6 days. I've been off work sick since last August, when the pain in my right knee got too bad to walk, then my hands and left knee swelled up in October, and have been variably swollen and painful ever since. I don't want to lose my job, and am really hoping I might be able to go back to work in a few more months, but with the way I've been feeling I can't imagine being able to drive or do my job, just feeling too tired and woozy for even sitting at a computer! I am trying to keep hydrated and am using a mouthwash from the dentists - I had some problems with mouth ulcers before so can't entirely blame the medication, but this latest one was really bad. I had another blood test today and am seeing the specialist nurse next week, also I'll be having steroid injections in both hands (right wrist tomorrow, left wrist next week) which should help quite a bit. I suppose everything just takes as long as it takes and I should learn some patience!

[dgray78377]

I have been on methotrexate for quite awhile and the only side effect has been hair loss and mouth sores occasionally. I take folic acid for sores which has stopped and so has hair thinning. Please be sure to take vitamins it would help you.

[Yooneek]

Been on MTX for 2 years. Take 20mg once per week and folic acid 6 days per week. I have never had any side effects. I also take Arcoxia anti inflammatory - 1per day and 6mthly infusions of Rituximab - which the jury is still out on.

[285641 in reply to Yooneek]

Hi there, I was wondering how you went on the Rituximab? I have just been offer it but am nervous of biologicals I am on a triple therapy but not really stopping the disease damaging so this is the next step, so any info much appreciated.

[Chezis21 in reply to 285641]

Hi there.

I totally understand your reservations regarding biological medicine but for me it was a choice of getting my life back or being a cripple which was where I was within 18mths of being diagnosed.

Rituximab was not the answer for me. I had first infusion October 2015 and waited and waited.....results were marginal. My RA consultant changed my meds to Tocilizumab May this year and it has given me my life back.

Try to look at the positive aspects of being on biologicals the pros far outweight the cons.

Nothing ventured nothing gained. 😀😀

Keep me posted on your decision xx

Good luck

Chez

[285641 in reply to Chezis21]

Thanks so much for your reply, sorry it didn't do much for you but yes as you say nothing ventured nothing gained ! My problem is I feel ok at the mo and managing quite well so am I better leaving well alone or getting that last bit sorted ! I suppose no harm trying but think I'll delay until after Xmas as this time last year they cut my meds and of course by Xmas I was laid up !! will keep you posted So pleased you got to where you need to be on the new meds xxx

[Chezis21 in reply to 285641]

Hi there

Not sure why you would be offered Ritiximab if you are doing ok. Biologics are usually offered when DMRADs fail to get the disease under control as they are very expensive and some cannot be administered other than by IV. Where do you live?

I hope you continue to keep well xx

[285641 in reply to Chezis21]

Hi there

Yes that's my thoughts too ! I went for check up and felt quite well but they said the disease is still quite active and come back in a month, on doing that I felt even better but apparently there was no difference in the fluid round many of my joints so they still want me to try Rituximab. I'm going for x-rays to compare damage from previous ones before I say yay or nay. This all started this time last year when a locum wanted me weaned off Leflunomide and its taken till now to get back where I was.....

I live in Scarborough North Yorks

Hope you are still feeling ok too xx

[Hidden]

Hi VronMc

You are feeling exactly the same as me when I first started with RA. I couldn't believe how quickly my body started to shut down and become quite stiff and painful. Nobody explained to me that this state is now temporary and I felt very depressed.

My symptoms started in March 2014. By May 2014 I found it difficult to move. In July RA was confirmed and I started taking MTX, in very small doses to begin with. I felt the effects within weeks. Started work in Oct 2014 - not fully better but very optimistic. I'm now fully functional.

Please don't think you won't get back to working life again. It will take time but these medications are brilliant.

Best wishes.

L

[Hidden]

Hi, Im new here and have questions about methotrexate and other steriods,etc.

I was diagnosed in 6-2009 with Sjogrens & Fibro, post ablative hypothyroidism in 4-07, cardiomyopathy in 8-07, osteoarthritis 5-13, glaucoma 12-2014

Im highly Allergic to steriods...cortisone, prednisone, plaquenil, colchicine, aspirin, ibuprofen, pain pills, etc

Ive read your posts and many say they take methotrexate by injection?? Again, I cant Metabolize pills, Ugh ;-(  .... so I suffer badly. Ems has picked me up 18x in 1 1/2yrs, most recent was Monday 3-21-16 for increased BP, horrific pain in lower thoracic, both knees & wrists like balloons, elbow, etc. 

What is the lowest dose of methotrexate by injection ? Can you get at Drs office ? Side effects especially for someone like me ? I have No help, live alone and I'm a disabled Senior.... Any advice appreciated!  Marti

[nomoreheels in reply to Hidden]

Welcome Marti. It sounds as though you have a lot going on. Are you under the care of a Rheumatologist? I was diagnosed with RD & OA in 2008 & I've been on MTX for Rheumatoid Disease (Rheumatoid Arthritis) nearly 7 years, 6 of them by injection, currently 17.5mg. In the UK as MTX is a specialist med it has to be prescribed by a Specialist so if the guidelines are the same in the US your GP or doctor wouldn't be able to prescribe it initially. I'm afraid I don't know if it is prescribed for fibromyalgia, I'm not even sure it is prescribed for it here in the UK so I don't know about in the US, that's something you'd to ask your GP or Rheumy as well. Also if it's contraindicated with any of the meds you're already taking. I do know it's not prescribed for Osteoarthritis. If you're undergoing tests for RD (RA) your Rheumy will discuss all your options with you.

The lowest dose Metoject pen available in the UK is 7.5mg. I'm not sure if it is still available in the US separately in a small multi dose bottle & separate syringe but if it is suitable for you it may be possible to start on a lower dose, that's something to ask your Rheumy or Nurse Specialist. As you've probably gathered it's generally better tolerated than tablet form but of course we all react differently but as it's a folate antagonist folic acid is prescribed to take which is intended to reduce side effects. MTX is taken weekly & opinions differ on how frequently folic acid is prescribed but it can vary from one day a week to every day except MTX day. As you seem to have sensitivity to meds I would hope if you were to start MTX that you are well monitored, certainly at the start of treatment & if you have increases in dose. I would suggest if it is considered suitable for treating your fibromyalgia & you're not under the care of a Rheumy you speak to your primary carer & ask his advice.

I hope this helps & otherwise you're receiving good care.

[Hidden in reply to nomoreheels]

Thank you for the info! Yes Im in a painful spiral and the past few years have really done a job on this old body! My Sjogrens is the main culprit being autoimmune. The Fibro was added as a topper, ugh. Now Im either having pseudo gout or RA. I had an Anti-ccp, ESR,CRP & also a Cortisol test run the other. Awaiting results. All of my other bloodwork is Negative for Lupus & it would be late onset in my case.

I hope it isnt RA on top of the Sjogrens, Fibro, PA hypothyroidism, etc. Im just so miserable &the weather & time is wearing me thin. Not being able to metabolize pills is a curse in itself. Not taking anything....ugh

I have a Rheumy, PCP, Endro, and Cardio Drs. Im trying to research choices cause I know my body best....

I had tried Gabapentin & only 100mg.... cut it in half (50mg)...couldn't take it either. Thought it may help the nonstop body burning in addition to the Sjogrens & Fibro pain ?

[nomoreheels in reply to Hidden]

Aw bless you, it does sound as though it's letting you down but I hope your Specialists are doing all they can for you taking into consideration your troubles with tablets. It would be your Rheumy who you'd need to work closely with then. When trying to sort suitable pain relief for OA I had regular reviews with my GP & one I tried was gabapentin & got up to 1800mg daily but it didn't do anything for me so with her approval I tapered I off it. My h can't take it, he's sensitive to many meds particularly strong pain relief so I do understand when limitations dictate, fortunately he can tolerate paracetamol & so he's been taking that 6 hourly since his heart op & subsequent dehiscence repair last year. 

I hope it isn't RD/RA either but if it is & we can be of any help just ask, many here have collected autoimmune diseases including Sjögren's, thyroid, fibro so I'm sure someone will be able to help. There are also other dedicated Healthunlocked sites you might like to introduce yourself to, just having contact with people who share your conditions can help you feel less isolated. If you press Directory under Communities on the black bar at the bottom of the page you'll find the search bar to enter conditions.

Take care.

[Hidden in reply to nomoreheels]

Thank you so much. Its Good Friday and 8:45a Eastern time. I wish you a Blessed Holiday....

[nomoreheels in reply to Hidden]

12.55pm GMT here & a beautiful cloud-free Good Friday. Have a lovely Easter.