Psoriatic arthritis and methotrexate

Kozi27

Hello I've just been diagnosed (today!) With psoriatic arthritis having had various joint swelling on and off for a couple of years. I don't suffer with psoriasis but it does run in my family, my daughter has it! I've been prescribed methotrexate (12.5mg) to start with but I've been reading that a lot of people seem to suffer with sickness so I was wondering how quickly the side effects happen (if they happen) as I'm trying to work out what day is best to take it as I work part time. TIA.

moderator

Hi kozi27
Welcome to the forum sorry you are going through a lot at the moment we understand what you are going through as everyone here has a form of arthritis and knows what you are going through.This forum is full of lovely understanding and encouraging people who will try and help in any way to make you feel part of the forum the most popular forums are Living with Arthritis and Chit Chat.
Hope all goes well Christine

dreamdaisy

Hello, I have PsA without much of the P so that's a disguised blessing if ever there was, I know which I would prefer to have. I began back in 1997, started meds in 2002 and was accurately diagnosed in 2006 which changed nothing whatsoever.

People rarely mention that the meds they are taking don't cause them any trouble probably because it never occurrs to them that others may be having a different experience. I had a reaction to tablet meth (this was back in 2003 I think) in developing a rash on both forearms. Having been born with severe eczema I was not in the slightest bit bothered but my rheumatologist was so I was taken off it. Should nausea prove to be a nuisance there are ways to reduce it but first it's probably best to start as advised, don't think too much about it, and see how things go.

As you are probably aware this is an auto-immune disease (as is psoriasis) and the only way to control disease activity is to reduce the immune system by suppressing it. This leaves us more open to infections so it's time to increase hand hygeine (and that of those around you) and you are entitled to a free flu jab which is worth having. You don't mention your working days or hours so maybe take the meth on the day before you have the longest break from things.
Another option is to take the tablets in the early evening. I hope it helps, it can take up to three months before any benefit is felt and you should be having regular blood tests too. Good luck and please let us know how you get on. DD

Kozi27

Thank you for the replies. I work Mon, Tues, weds and Sat so I was thinking of starting as close to my days off as poss. I didn't know about the flu jab so thank you for that and for the advise. I'm quite anxious about starting the medication so it is nice to hear others advise and experiences.

robinl

My partner has psoriatic arthritis and her consultant would like her to go on methotrexate. However, she is really scared by some of the negative stories about side effects and so she absolutely refuses to take it. However, I see the pain she is in and the damage that is being done to her joints, so if there was a more effective treatment than what she is currently taking (anti-inflammatories and pain killers) then I would love to see her take it.

Can anyone who has experienced this treatment pass on their views of what to expect (good or ill)? Thank you.

moderator

Hi Robinl,

Welcome to the forum, it’s always nice to hear from family members when an arthritis diagnosis has been given, knowing that you are ready to do what you can will be a great help.

There are lots of side effects listed for methotrexate- there are a lot listed for paracetamol too. Meth is a 'cancer' drug but the dose we have is tiny compared to that so try not to let that overwhelm you. These drugs, called disease modifying are important, they stop the damage to your joints and that’s vital - you don’t want osteoarthritis as well as psoriatic. You are monitored closely by blood tests and you should have a phone number for your rheumatology team.

Here’s the leaflet about PsA, psoriatic arthritis

https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

which includes information on methotrexate via a link. If your partner wants to join we can be right alongside while your body adjusts, it can be good to have someone who 'knows' when you want to share any highs or lows. You are welcome too x

Take care
Yvonne x

robinl

Dear Yvonne,

Thank you for your reply. My partner has been diagnosed for many years and unfortunately already has extensive joint damage. While I appreciate the link to the leaflets, we have seen these before but what is missing is the personal stories from people who have actually experienced the treatment. I know that healthcare professionals have to say what "might" happen, but this is not at all reassuring to someone who hates the idea of taking any medicine (though she takes naproxen and pain killers). She once tried sulfasalazine which made her feel very ill. She therefore wants to avoid that happening again, and it makes her reluctant to try any other medications (she tends to think that if one failed then they all will). That methotrexate is also used as a cancer drug is extremely off-putting for her (the difference in dose does not really convince her that it would do no harm).

The main side effects that worry her are the potential nausea and, something extremely important for her, the potential hair loss. What I think might help overcome her fears would be if people who have experienced the effects of methotrexate could share their experience. If it made a huge difference to their life, if there were minimal side effects, then it could help convince her. But on the other hand, if people found it as horrid as she anticipates then please say that too.

The hair loss side effect is one that particularly worries her. Can people who have taken methotrexate say how often they find this happening? Is there anyone who found this occurring, then stopped the drug? If so, was the hair loss reversible (if so this could reassure her to at least try it)?

I have asked all these questions to her rheumatology professionals. And the answers are always along the lines of "we can't say for sure, perhaps it will, perhaps it won't, we cannot give any guarantees...". I'm sure that they are bound by medical ethics to do this, but to be frank it is not at all helpful. However, they did recommend that perhaps I could get contact with people who might be prepared to advise via this forum. I am extremely grateful for any help you can give.

Robin

Kozi27

Hi Robin, I haven't started methotrexate yet so can't give you my experience. I completely understand where your partner is coming from, I do have the same concerns however i haven't previously tried anything else. I also don't have any joint damage (as far as I'm aware) as I've only just been diagnosed. My main worry is joint damage so for me personally, I would rather try the methotrexate and risk the side effects than get joint damage. Everyone is different and no one can say for sure if you will have the side effects at all, the only way to tell is to try it. I'm sorry I can't be of much help and I hope you find some reassurance.
Marie.

dreamdaisy

No-one can tell her what will happen because nobody knows. I have never read up on others' experiences because they are not me, do not have my attitudes or aptitudes. My experience is also of no relevance to any one else because they are not me.

I inject methotrexate and have no trouble whatsoever apart from feeling extra tired every now and again (usually when it's a two injection week as I also fortnightly inject humira). My hair has thinned a little but that could be because I am soon to be sixty. It doesn't bother me in the slightest. The meth and humira do nothing for the OA which I am fairly sure developed because, thanks to medical disinterest back in the early days, I did not start the meds soon enough but who knows? I don't and I don't dwell on it either.

One person's life-wrecking nausea is another's twenty minutes of feeling vaguely icky. One person's mild headache is another's crippling migraine. I know that my auto-immune disease is under control because my bloods are lovely and that this is as good as it gets. I know that without the two medications the quality of my life would be very different, I prefer to make things as good as they can be because this disease doesn't only affect me. My husband has witnessed my steady decline and has supported me in any decision I have made regarding the medications: I take them for both of us, as I see it I have a duty to him to be the best I can be. DD

stickywicket

Hi Robin. I've read your posts carefully and, to be honest, I'm not sure anything or anyone will convince your partner of the value of DMARDS (Disease Modifying Anti-Rheumatic Drugs because she sounds to be dead set against them. Many people are when they first come to arthritis and its meds but usually come round to them after a few years of pain and damage and trying lots of useless 'snake oil' treatments. Anyway, for what it's worth, here's my story.

I was diagnosed in 1961 (aged 15) before modern DMARDS arrived on the scene. It was, at first, aspirin (“Take them until you get a buzzing in your ears” :shock: ), and steroids and then years of anti-inflammatories such as naproxen. Eventually the anti-inflammatories did for my stomach and, by the time of my first endoscopy, I had bad gastric erosion and signs of many healed ulcers. I now can't take them at all but nevertheless need a stomach protecting med daily.

Gold injections came and went (kidney problems with them) and, in 1981, I had my first new knee joints due to the bad osteo damage which had resulted. It was about ten years later that I had breast cancer. So DMARDS could not be held responsible. Not one had passed my lips.

Nothing improved until 2000 (2001?) when I was given methotrexate. Yes, there was still pain because damage done is damage done and DMARDS treat only our autoimmune forms of arthritis not the osteo which results when that is untreated by DMARDS. But things were, from then on, incomparably better. As for my cancer – that is now way in the past. Just a bit of my personal history which I have a habit of forgetting about when having to list previous illnesses :roll:

Side effects? The main one is that occasionally – not always – I get a day of more fatigue either the day after I take the meth or the day after that. Nothing like the fatigue of my unteated RA. In the early years I had some hair loss ie three or four on my pillow occasionally, or in the wash basin after it was washed. Absolutely nothing that anyone would notice. I always take it with food because, after what anti-inflammatories did to my stomach, I can feel a bit queasy for the day if I don't. Even, occasionally, if I do. But so what? It's slight queasiness, no more. And that's it.

Of course I have my regular blood tests so that, if there was a problem, it would be picked up immediately. I should add that, along with the methotrexate, I take another, mild DMARD, hydroxychloroquine. Many of us are on two or three DMARDS. We have to be. It takes powerful drugs to combat a powerful disease and sometimes it's a process of trial and error before the right one for each individual can be found. I just got lucky. So, you see, the reason why the docs will give no guarantees is not because of 'medical ethics' but because there are none. The only guarantee anyone can give is that, without the DMARDS it will just get worse.

Personally, I suppose because of my experience with RA, I just don't understand people who are worried about side-effects, which are always potential, but not about the damage created by the disease, which is always a certainty. For what it's worth, I think any hair loss caused by meth would be reversed once the med was stopped. How on earth one would notice the difference is anyone's guess.

I think you must be a very kind, tolerant partner. I'm sure my beloved husband of 50 years would be far less so and chucking advice at me right, left and centre Ditto my sons. But we arthritics, as they would all agree, can be extremely stubborn You might have to accept that she has chosen her own route and will not change it.


Hi Marie. Go for it and good luck m0150

BettyMac

Hi Robin

I've had no hair loss issues on methotrexate. In fact, my hairdresser commented on how lucky I was to have such thick hair!

I looked at the big picture regarding methotrexate.
Yes, it's a powerful drug with some side effects - but I balanced that against the effects of having rheumatoid arthritis.
Many people think RA just affects joints - but it can have effects on all the major organs too.
Personally, I'd rather deal with methotrexate than uncontrolled RA.

For me, the main side effect of methotrexate is nausea. This tends to settle as you get used to the drug - and there are good anti-nausea tablets.
Injected methotrexate tends to cause less nausea than the tablets do because it bypasses the digestive system.
And the injections are easy-peasy - even for a reformed needle phobic like me!

I can understand your concern and frustration but all you can do is bring her attention to the information. Ultimately, it's her body and her choice.

Best wishes to you both.

dreamdaisy

Hello kozi27, I was wondering how you are feeling about things now: I'm sorry your thread was hijacked, I haven't forgotten you! DD

Kozi27

Hi DD, thank you, I don't mind it's all relevant and helps me get a better picture of what to expect. I just want to hurry up and get started as I'm hoping I will get some normality back wishful thinking!
Marie.

dreamdaisy

I hope that it does make a positive difference sooner rather than later, it can take anywhere between a fortnight to three months before it takes effect simply because everyone's physiology is unique. I remember a member on here, williamlargs, who had the meth dream: he began on a low dose, reduced it further and all went very well. It can and does happen but of course we never hear about it.

Intellectually I know that the methotrexate and humira combo I take is 'working' and that it is a good thing. I don't feel any physical benefit thanks to the OA but no-one is entitled to everything. DD

Kozi27

I got the amount I'm starting with wrong, it's actaully 15mg (only just picked up the prescription) which I'm assuming is relatively low? Compared to a lot of you guys on here, I'm at the very beginning. I'm hoping I've been diagnosed early enough that it can be under control. Is it possible to come off meds completely or is this something I will have to take forever? It never occurred to me to ask the consultant.

stickywicket

I share your hopes, Marie.

As for meth, 15mgs is just one tablet up from 12.5mgs as they come in 2.5mg tablets. 15 is probably big enough to do some good but not so big that your body will be flummoxed by what you've put into it I was on 15 for years. At my worst I was on 22.5. I think after that they go for injected meth as it seems to produce better results for the same dose. I have now, very carefully and slowly (so that I can take it unawares ) reduced to just 7.5 per week. Bear in mind I've had RA for 56(?) years and I've only succeeded in reducing it so low in the last 5-6. They talk about it possibly 'burning itself out' but that hasn't happened. I can't get lower and have stopped trying. So, the point of all this is to say I think it's better to see the DMARDS as a continuing thing. Sometimes, especially in the early years, we can go into periods of remission. That would be something to sort out with your rheumatologist. I talk every plan over with mine. Always have done.

Claire89

I was on methotrexate injection I was chronically sick it got to the point I was sick before injecting just getting the pen ready and the smell of the sterile wipe would set me off. I had bad fatigue and hair thining but I can't be sure that was due to the methotrexate as I've already suffered from alopecia twice before starting that.
The injection helped my skin but didn't make a difference to the pain I've stopped it now couldn't handle the sickness.

Hopefully works better for yourself

Katy

robinl wrote:

My partner has psoriatic arthritis and her consultant would like her to go on methotrexate. However, she is really scared by some of the negative stories about side effects and so she absolutely refuses to take it. However, I see the pain she is in and the damage that is being done to her joints, so if there was a more effective treatment than what she is currently taking (anti-inflammatories and pain killers) then I would love to see her take it.

Can anyone who has experienced this treatment pass on their views of what to expect (good or ill)? Thank you.

Hi, I was on methotrexate but came off it as my hair was starting to thin and fall out, I’m only 52 [emoji51] also constant chest infections etc. The worst part of RA tho was my hands wouldn’t move, but I make a paste up u eat, all herbal, and it’s given me 90% movement back in my joints, handy when u couldn’t go too loo, tastes minging but works if anyone interested [emoji4]


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robinl

A big "thank you" to all who have taken the time to reply--I really do appreciate this. It is obviously a tricky thing as everyone is different and even in the responses here there are those who have few or no ill effects, with significant benefits, along with people who have more negative experiences.

It is quite difficult for someone who does not have the illness to be fully objective about risks versus benefits, and it is not me who suffers the pain (or the potential side effects), so I hope that you don't mind me asking you about this.

Good luck with your own treatments. I will share your responses with my partner--it might not convince her of course!

Robin

stickywicket

Of course we don't mind, Robin. It's what we're here for. I wish your partner and you the very best with whatever course she decides tó pursue.

Buka

I take 15mg of methotrexate every Monday morning and can honestly say I have never had a moments nausea in more than ten years of taking it. When I was on a higher dose I had a problem with mouth ulcers but as soon as the dose was reduced all was well. I take the mtx along with Humira and have had really positive results in controlling and managing my RA. Like DD, the week I take the Humira I can get tired and sometimes get a headache but that is it. All worth putting up with to be able to live a more active life. The hair thinning is minimal and can be down to getting older anyway. I have to agree with DD that no matter what advice is given on the forum no ones knows how they will be until they actually start to take the medication because we all get affected in different ways. If the side effects become unbearable you can always stop and try something else. Some of the choices we have to make are difficult and quite scary but I just try and weigh things up and get the best quality of life I can. At least we are lucky enough to have several options these days and for that I'm extremely grateful.

stickywicket

" I make a paste up u eat, all herbal, and it’s given me 90% movement back in my joints, handy when u couldn’t go too loo, tastes minging but works if anyone interested Image"

You eat it? I thought, previously, you meant a topical one. You don't need to tell us what's in it if you don't wish too but, please, do let your local pharmacist check it out to ensure there are no contraindications.

The last time someone mentioned a 'completely natural ingredients' pill, it turned out it had been found to contain steroids, antibiotics and even an anaesthetic :shock: And belladonna and digitalis are 'natural' ingredients Stay safe.

dreamdaisy

Hello Kozi, rheumatology is an unusual department in that it never discharges a patient. Others manage to fix their patients, even cure them, but rheumatology has yet to reach those giddy heights.

How are you getting on? DD

Kozi27

Hi, thanks for the replies. I took my 2nd dose last night and as yet, haven't had any side effects at all. Perhaps a little more tired today but I forgot to take a pain killer before bed and was awake thru the night because of the pain. We shall see...

stickywicket

Good. I do hope, and rather expect, that will continue.

dreamdaisy

That sounds like a good start, I am very pleased for you. DD