Advice please on medications I'm being offered

craig56

Good afternoon to everybody.

I just wondered if I could get some advice on medication effects from people on here who are actually using them, rather than the consultant who prescribes them.

I'll bore you with an explanation first. I was diagnosed with Palindromic Arthritis around 6 years ago, the medication I was put on was Hydroxychloroquine, for around 3 years it really helped, no flare ups or anything, then the pain returned and became a daily thing so the consultant had more tests done and I seem to have moved on to Arthritis that doesn't come and go like the original diagnosis. He wanted me to go on to taking Methotrexate which I tried but felt lousy on it, he has now prescribed Leflunomide, I had a counselling phone call from a nurse to explain all the possible side effects and the need to get fortnightly blood tests and blood pressure readings and ring them in for the first three months. To be honest it's all a bit overwhelming, my partner had a major stroke around 4 months ago, I'm trying to work shift patterns alongside home life balance and I'm just concerned about all the possible side effects, having said that I'm currently taking one anti inflammatory a day, I think called Etorocoxib, alongside a stomach protecting drug and a couple of cocodamol later in the day, this helps me get through my work day (manual job) but I'm fed up of waking every day with pain, hobbling around work the first couple of hours until the drug takes some effect, and knowing tomorrow it's the same again.

So I wanted to ask if anybody is taking Methotrexate or Leflunomide and if you are how it's helping, and if I'm just over worrying about the possible side effects versus the benefits.

Sorry for the long opening post!

annabanana

hi @craig56 , thank you so much for your post and welcome to the online community! It is important to remember that everyone is different and will respond differently to medication, what works for one person may not work for another. However, I will say that in my experience methotrexate is either a hit or a miss, works wonders for some people but not for others. I have attached a couple of links which you may find useful, hopefully someone comes along and shares their experiences.

https://versusarthritis.org/about-arthritis/your-experiences/your-questions-answered/your-questions-on-methotrexate/

https://versusarthritis.org/about-arthritis/treatments/drugs/leflunomide/

Ellen

Hi @craig56 You know your medical team do have to let you know any side effects and those early tests are to make sure you are well. It doesn't mean you will have any problems at all. Hopefully you won't.

I don't know whether this will help it's a search I did about Leflunomide:

https://community.versusarthritis.org/search?domain=all_content&query=leflunomide&scope=site&source=community

Do please let us know how you get on. You are dealing with an awful lot ATM.

Best wishes

Ellen.

Jca

hi. I’ve been on methotrexate for the last 3 and a half months. I went straight onto the injections to do myself weekly. Unfortunately it’s had no effect except for reducing swelling slightly in my knees. The side effects have been nausea and mouth ulcers, slight hair loss and headaches, but tbh if the medication had worked I’d of put up with them.

As mentioned each person is different in their response to medication, and just because it hasn’t worked for me another person could have great results.
I think it can take several attempts before an individual can find the right medication and as long as your rheumatologist dept are helpful eventually we can get there.

craig56

Thank you all for your replies, sorry I'm late getting back, a week of night shifts skews my head!

I've read all the leaflets on both medications several times, nothing makes me want to take them (except the each morning struggle to pull socks on!) really don't know what to do to be honest. I think the best bet may be to book another consultant appointment, but I think he just feels I should take the Leflunomide.

Thanks again.

Naomi33

Morning @craig56

I like you was diagnosed with PRA 3 years ago now, still taking Hydro, they tried me on MTX aswell worked well but side effects with liver enzymes not good so had to come off. I have OA in elbows and hands so double whammy 🤪

Awaiting more blood tests and chest xrays to start new drug Yuflyma injections (fingers crossed).

I keep logging pain and take photos of flare ups so if you can I would do so for evidence in future.

Good luck and keep asking questions.

Best wishes @Naomi33