Terrified to take methotrexate! : Good morning all I... - NRAS

NRAS

33,902 members42,084 posts

Terrified to take methotrexate!

Cheylann profile image
28 Replies

Good morning all

I have been diagnosed with suspected psoriatic arthritis although I'm not convinced. I have permanently sore elbows and very painful heels. I never have much swelling and all my blood tests are normal. Now and again my knuckles on one or 2 knuckles will swell as well as my 2nd toe at the end and be very painful. But, so far that is it.

After 4 years of tests, lots of steroid injections, they have finally decided to put me on methotrexate injections starting very low dose of 10mg.

I've just had a huge kidney stone removed, have a few gall stones and 4 years ago had major stomach surgery.

So, I'm absolutely terrified to take this strong drug for something I'm not convinced I have and potentially cause other serious problems in my body. I'm also terrified of the side effects of the drug.

The one thing that bothers me is that whilst they have done many ultra sounds and xrays, they have never done a mri scan of my body which is what I feel is necessary to see exactly what is going on.

Any advice will be appreciated.

28 Replies
oldtimer profile image
oldtimer

I can well understand your reluctance to accept that you have now been diagnosed with a long term condition as well as your previous problems. It's a difficult adjustment to make that you will have to live with this condition from now on. But the fact that you have written here suggests you know that you have to accept it.

Please have a look at the NRAS website for accurate information of how methotrexate is used in Inflammatory Arthritis. In low doses used in this condition it is very safe and the gold standard of treatment.

And you can stop it if it doesn't happen to suit you - reactions to it are very individual. I was reluctant to start it but read about it exhaustively and decided to give it a try. As it happened it didn't suit me and I've tried several other drugs since and about to try another. Other people go on it, get on well and have good control for years.

Untreated your arthritis will damage your joints and possibly the high immune state other parts of your body also.

Sheila_G profile image
Sheila_G in reply to oldtimer

I fully agree with oldtimer. It is worrying when you first take any drug and it is understandable that you are nervous about it. You need to speak to your rheumy nurse or GP about your concerns. I have taken mxt for 19 years and after a settling down period and a mix of other drugs, I feel absolutely fine with few flare ups now. I know it is difficult but you wouldn't have been prescribed mxt if you didn't need it. You will be monitored closely at first so please try not to worry. Good luck.

Charlie_G profile image
Charlie_G

I’m 37. I was left undiagnosed and untreated for 20 years until last year, when they finally concluded I have likely PsA. For the first decade, my main issue was lower back and sacroiliac joint problems. I repeatedly went to the GP and was told ‘weak back’ with a shrug. Over the following ten years, my back remained an occasional but persistent problem. Then a knee joined in. Dismissed because it was two bouts of swelling in ten years, even though the pain was more frequent. Then one toe. Also only swelling with that but really bad pain for about 9 months. Fatigue was the only constant symptom that accompanied the painful or achy joints, and all of my bloods were completely normal even with a knee the size of a football. What finally got me diagnosed after years of back and forth was a single swollen pinky finger joint and a subsequent ultrasound: ultrasound is more than enough to identify inflammatory arthritis. If they’ve found inflammation on ultrasound, then that is generally considered definitive for an autoimmune driven condition effecting the joints, be that RA, PsA or anything else under the RD umbrella. What determines which one you have is the pattern of involvement, clinical history (such as if there’s any history of skin psoriasis), blood and antibody tests where applicable, and quite often the consultant’s own professional understanding and experience. My understanding is that whole body MRI is rarely done for any purpose, partly because we know if you MRI most people head to toe you’ll find something on the scan that is incidental and not of any consequence. As far as I’m aware, if ultrasound is positive, MRI is generally only considered necessary for assessing joints that are difficult to look at otherwise, such as the spine and hips, or if there are question marks about the nature of the underlying disease. MRI was used to confirm that my weak lower back was in fact inflammatory arthritis.

These days I’m still uncontrolled, but my disease mostly manifests as pain in the 9 effected joints (some of which might not have been affected had I been correctly diagnosed and treated years ago) and my back. I get occasional swelling in the odd joint, but it’s transient - it might last a day or two, but rarely longer than that, before popping up again at will days or weeks later for another short spell. I’ve been flaring constantly since having to stop all treatment in March, so my disease is much more about pain, fatigue, and brain fog than it is swelling. But I also have permanent deformity as a result of PsA being allowed to run rampant. Taking medication - and methotrexate is the initial, first line choice for all types of inflammatory arthritis - is how to best prevent permanent damage to both joints and other parts of our bodies. Inflammatory arthritis of any kind isn’t just about our joints, the effects are systemic. I sometimes wonder if some of my other medical issues have been impacted by an immune system going haywire for years.

Ultimately, mtx didn’t work for me, but it’s a very good drug for thousands of people, and I had very little in the way of side effects on the tablets. As oldtimer so rightly points out, if it doesn’t work or there are major issues persisting after a few weeks of taking in terms of unwanted effects, no one will force you to stay on it. But I would give my right arm to undo the damage of not being diagnosed and offered treatment for so long.

chunkypie profile image
chunkypie

I was on Methotrexate for the same condition as well as a biologic injection for psoriasis. Tbh i didnt get on with Methotrexate it gave me Brain Fog for a few days after So i came off it. Hydrating is the most important thing with Methotrexate to stop any side effects and to take your folic acid they give you 🙂

helixhelix profile image
helixhelix

I have been on MTX for 11 years now. It gave me my life back, and I wouldn’t be without it. I realise your day to day problems at the moment are manageable but - as Charlie says - this is a systemic disease. And progressive. It could be slow, it could be fast but the issue is that you most likely won’ know what damage it is doing until it’s happened.

I am far more afraid of the disease than I ever was of MTX.

Neonkittie17 profile image
Neonkittie17 in reply to helixhelix

Me too HH .. Mtx was an excellent solo med for me before I added Rtx. Worked perfectly for 8 years. Also if you don't try work through some non too serious side effects|try navigate round those and see if they stop, then you could be hopping from med to med so fast. Often blood tests go a bit out of sync at first then soon settle and that was for me on Mtx. I switched to sub cut too after 5 years and that was even better. If any side effects are obviously serious you need to speak to your rheumy fast. I wouldn’t want to be unprotected and let RA go out of control systemically either.

Cheylann profile image
Cheylann in reply to Neonkittie17

I agree you don't want the disease to go out of control but I'm so hesitant as I'm not convinced I have it. Denial maybe? I perhaps need to do some more reading on Psa.

Neonkittie17 profile image
Neonkittie17 in reply to Cheylann

I don’t know much about PSA tbh. There is a group on HU called Beyond Psoriasis (you may have already found this.) As Mtx is the first RA med you tend to started on (used to be Sulpha) that tells you it’s deemed a safer med than many but they can all have side effects for some people, but not for all. I hope you can find out more re PSA and also be reassured by your rheumy. You will be monitored very closely, especially at first.

Cheylann profile image
Cheylann in reply to Neonkittie17

Psa is similar to RA. Both immune system diseases except Psa likes to attack the tendons at the point they enter the joint. Otherwise not much difference.

Neonkittie17 profile image
Neonkittie17 in reply to Cheylann

Worth a look at the PSA page or maybe you have already to see if they can be of some more specific help? Good luck.

Cheylann profile image
Cheylann in reply to helixhelix

I'm so pleased to hear a positive story about methotrexate. Maybe I'm not afraid of the disease as I'm not convinced it's immune related.The injections are on top of my cupboard. I'm trying to pluck up the courage to take the first one. Any tips.

helixhelix profile image
helixhelix in reply to Cheylann

While you hesitate the disease could be gathering speed. Right now it is manageable, and many people have found that taking drugs for a while while they clean up their lifestyle then allows them to taper off the drugs and the disease remains controlled.

If you leave it the disease can get more and more active, and it could then be much more difficult to control and require more and stronger drugs.

10mg is a very low dose of MTX, so very unlikely to cause you side effects. And if it does you can stop it again!

Cheylann profile image
Cheylann in reply to helixhelix

Going to take first injection Friday night so husband is around on Saturday just in case. The rheumy said she couldn't understand me wanting and willing to take steroid injections which are much more damaging and more immune suppressing than methotrexate but being so reluctant to take mtx. Guess it's the whole denial thing.

Will let you know how I get on.

helixhelix profile image
helixhelix in reply to Cheylann

Well done! It’s a hard decision to make. I started on tablets and I remember staring at them on the table for hours. But I’m so glad I did as have never been as bad as I was then.

Cheylann profile image
Cheylann in reply to helixhelix

Going to try. As you say I can always stop.

Sorry to hear of your condition. Tbh I didn't last long on methotrexate...my throat was closing up, I went hoarse and my hair was falling out a bit. I think it may agree with some people and don't want to be too negative. If you do find you are intolerant to it, they will quickly try something else. I am currently on imraldi (adalimumab) biologic injection for psoriasis and psoriatic athritis. I've been on it for 2 and a half years. Self-inject it every fortnight. I also get steroid injections for athritis flares. Please do not hesitate to phone rheumatology dept and ask for their secretary to pass on a message if a treatment needs changed or to speed up appointments. Keeping a diary of how a treatment is working can be useful too - I found this helps as sometimes my mind would go blank in appointments and it is easier to spot a pattern. I agree with some others here saying treatment will help avoid joint damage. All the best.

Goldsky profile image
Goldsky

I totally agree with everything old timer has said. Accepting is often the hardest thing. Very best wishes.

Lilmo1 profile image
Lilmo1

I don't want to make you any more worried than you already seem to be, my husband has psoriatic arthritis and also Rheumatoid arthritis, he was put on Methotrexate for his first try, it didn't really give him any ease but after he was on it a few months his GP rang him and told him to stop it and asked had he taken his for that day which he said no, she said it was making his liver function depleted. He since has been put on different drugs, and is currently injecting weekly Abatacept which he's been on approximately 1 year.He has bad pain in his knees which swell up, he went a week ago and had the worst one drained, he's had that a few times, but gets only 1 days relief.

He has terrible joint pain, his wrists, his knees, and hands all give him torment even on this medication but would probably be worse of it.

Gymcactus profile image
Gymcactus

I have been on methotrexate since diagnosed and fortunately for me no damage had been done to my joints, have to be careful not to overdue things, but live a near normal life. Your bloods will be strictly monitored while on this med. and any problem quickly picked up.

Ascidian profile image
Ascidian

I was diagnosed with PsA 2 years ago. My bloods are always normal. I believe this is the case for some 50% of PsA sufferers. It is also very common for PsA to be asymmetrical and for there to be heel pain, as it affects tendons as well as the joints themselves. It has a particular love of the place on the heel where the achilles tendon joins the bone. I'm no expert, of course, but it sounds to me as if you quite possibly do have PsA. In which case it is very important to get treated asap. I left it too long because my recurrent pain and swelling seemed quite minor and I just put it down to age. Then more fingers suddenly joined in and I couldn't hold a cup of tea in one hand, press a button, do my clothes up, which was really very scary. This lasted a couple of months, during which time several other joints joined in and I finally went to GP. By the time I had my hand x-rayed, there was permanent damage.

I started on sulfasalazine, which helped a bit, for a while, but then lost efficacy. So my rheumy added in methotrexate, which made quite a big difference. I think i may need my dose increasing a little, but i certainly noticed the difference when I had to stop the mtx for 2 weeks recently. I have had no side effects from the mtx except a bit of tiredness the following day for a couple of weeks. If you do have major side effects which last more than a few weeks or if it just doesn't work for you, just let your rheumy team know and they will try you on something else. There are many different drugs available. Good luck xx

Cheylann profile image
Cheylann in reply to Ascidian

I'm plucking up the courage to give myself that first injection. I agree with what you say about the tendons. The pain where the achillies tendon attaches to heel bone is almost unbearable and just never goes away despite several steroid injections. Also the tendons joining my elbow joint are permanently sore and inflamed.Guess I'm having a hard time accepting that I have this and was hoping it would get better on its own. Almost viewing it as an injury.

Ascidian profile image
Ascidian in reply to Cheylann

I can relate to that! It does get easier once you accept it, though because the drugs help, but also because you can start to develop coping strategies. Good luck!

Angels-delight profile image
Angels-delight

Good morning Cheylann, I can understand how you must be feeling. My RA blood test would come back normal yet I was in a lot of pain, similar to yours. For the last 4 weeks I have been having a really bad flare up. The previous biological injections had to be stopped until I saw a dermatologist specialist who specializes in RA/Psoriasis the really bad sores on most of my body and to decide which injections wouldn't make the Psoriasis worse but helps with RA control. I can't take mtx due to the side effects. I wasn't offered the mtx injections whilst living in the Uk. I am now on Cimzia injection every 2 weeks plus my excellent Rheumy increased my dose of prednisone last Monday decreasing by 1 tab each week and I am starting to feel better today. I don't know how things work in the Uk as I live in Canada. My sister lives in the Uk and is about to start on mtx once she has had all the tests.

Good luck with the mtx injections, I know several people who have the mtx injections for years and are fine. It is always best to listen to your Rheumatologist and any concerns discuss with them.

I can only hope that what I have said will help, take care. Sue x

runningbracken profile image
runningbracken

Like some of the posts above. I too couldn't do without the Mtx injection. Was in a terrible way before i started the Mtx. Luckily i haven't had many side effects, hairs thinning a bit and still getting localised pain ( elbow shoulder and wrist) but that's mostly when am sleeping at night after lying in one place for prolonged period.I run most days and also been using my bike again which am really pleased with. Without out the Mtx I wouldn't be able to cope with the pain and fatigue.

Cheylann profile image
Cheylann in reply to runningbracken

I've got permanent pain in my elbows and feet. So, if methotrexate takes it away then it's worth it.I just need to pluck up the courage to take that first injection. I guess it's fear of the unknown.

runningbracken profile image
runningbracken

It takes a little while to take effect and get into your system Cheylann but its much better than the Mtx tablets. Dont be afraid, as you say its the pain. You should feel the difference in a few days if they give you the injections straight away. I had to have it by tablet first and took a few months before it started to work properly and get into my system.Drink lots of water when you take it and make sure they give you folic acid also.

Hope it works for you as it has for me.

Cheylann profile image
Cheylann in reply to runningbracken

Thanks for the encouragement. Guess I need to stop being such a baby and give myself that first injection. I'm not sure why I'm so scared. Guess I don't want to feel ill with brain fog and all the other side effects I've read people suffer from.

nomoreheels profile image
nomoreheels in reply to Cheylann

You're not being a baby, it can be a facer the first time injecting if you've never done it before. Did the nurse not go through it with you? It's usual to do so. Anyway, as long as they gave you folic acid, this helps with any side effects you may have, MTX is a folate antagonist so we need to replenish what it takes from our natural reserves. It's not a given you will have the side effects you fear, especially with injections. Don't forget as well that most who post here have problems, often they are easily resolved but lots of others have none so it's not a given you will. Just see how it goes, I do well off it.

You may also like...