I am fairly new to this although been having symptoms for over 7 years without help apart from pain relief from my GP. The hospital have been unable Diagnose until 3 months ago . I now know it’s palindromic RA. I am now on methotrexate injection 20 mg I have been talking for around 12 weeks and don’t feel any better. The flare ups are horrendous this has stopped me from working due to feeling so unwell and so tired all the time. The Meds make me feel horrible all the time as well.
Has this happened to anyone else ,any advice would be greatly appreciated indeed. Just want to feel human again . Good job my husband can look after us all. 🙃
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George27070
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Been on methotrexate for 12 months and then they put me on benepali for the last 5 months feeling lot better no pain I still just about work in a warehouse 4 hours a day 4 days but the fatigue is the hardest thing I to have a brilliant husband I don’t no what I would do with out him it’s hard your life has to change listen to your body keep pestering doc etc if no change hang in there I no it’s hard but you have to your not on your own hugs to you xxx
It takes a while to get to grips with what meds work for you. My husband has taken on a lot and at first did everything. Read the NRAS booklets, if you haven't already. They are free from the website. Take all the information and help you can get and a very good bit of advice I was given on here is be an active partner in your journey with the medics. You know your body best and they have experience and knowledge (one would expect).
The dmard's can take a long time to start working properly. My experience of methotrexate was it took at least 16-20 weeks, then I was taken off it due to side effects. I'm trying hydroxy now, been on it 7 months and just starting to feel the full effects. I would say each dmard needs a good 6 months to get going! we have to be patient 🙄
Do you have rheumatology help line number to ring? (not sure if you're in the UK?) if so you could ring the nurses for advice, maybe you need a steroid injection to tide you over?
They may be right.... I find that most DMARDs take up to 15 weeks to work. However, you should be reviewed in the next few weeks and I wouldn’t hold back on telling them about the problems you are having. xx
Hiya, welcome George27070. You're probably aware that, though others may not be, that Palindromic RD is different to RD in that it doesn’t destroy joints. That said it still needs controlling because the flares can be as disruptive & painful & will cause fatigue just the same as in those of us with RD experience.
I wonder, were you prescribed anything else to help your symptoms whilst MTX was given time to work or is that all you were started on? If not I’d ask at your next appointment, which as it's 3 months since diagnosis I would hope is some time soon. MTX generally takes 12 weeks to work, that's just general info though as people respond differently. You may find it kicks in in the weeks to come but if you're very unfortunate & it doesn’t there are other options your Rheumy will discuss with you. Often other meds are taken with a DMARD, such as NSAIDs & steroids to help ease inflammation & pain, maybe bring that up with your Rheumy. They don’t modify the condition as DMARDs do but can really help it work by their actions. You don't mention taking folic acid but I hope that was just an omission, it should be coprescribed with MTX to help ease any of the more common side effects. I inject 17.5mg currently & prescribed 5mg 6 days, just not taken on MTX day though being unlicensed there are no guidelines so Rheumys vary in their prescribing of it. Otherwise some non medical help may be from hot or cold compresses on your affected joints.
Were you given anything to help support your affected joints? Things like wrist splints if you have hand & wrist involvement, or knee supports, again if they're affected, these are the more commonly affected joints in Palindromic RD.
I hope some of these things help & I hope you've found it helpful being here. 😊
Yes I do take all the other medicine in your message. I think the thing is it’s taken so long to get to the bottom off it’s cause me to be low as well, tired is an understatement. There saying I probably has both forms as I am already on the list for a shoulder replacement . It’s mind blowing. I went from having a wonderful job which I loved to not be able to get out of bed. I have 3 children who find it hard to understand that doesn’t help. I haven’t got time to lay in bed 🙃
Like you took quite some time till I got a diagnosis. Methotrexate worked ok for me in the first 3 years then last February from know where things changed dramatically and after drug fails I’m still struggling to get it under control . Had 5 weeks on elerzi a Biologic and started to see some results when I got a chest infection and 3 weeks later still on antibiotics and no RA meds all my symptoms are coming back barely move this morning 🙄🙄hope I can get back on them soon. Patience and trial and error along side compromises is what I have learnt from this disease.
Like you very very lucky my husband is a God send but I do feel guilty that my disease has impacted on his and my families life. It effects us all.🥺
yes that’s the hard part of this illness it’s horrible. 12 weeks feels like a life time. I will however keep trying with the Meds.Thanks for your reply 😕
Ask your RA team as Palendromic I believe means just moves about which is what mine does. I don't think it makes any difference to treatment and really 12 weeks in not long, it took that time for the Lefludamide to work and same for Embrel.
Did you not have any steroid injections of tablets to take until the meds worked ?
Hi , yes this sounds like i could have written this post. I already have damage to my left shoulder. I am on the waiting list to have an operation already. This is supposed to be the start of this journey.
Yes I think the steroid injections worked better in my case.
My rheum team do not differentiate between palindromic and 'classic' RD in treatment terms, they just say it is a different and more acute presentation. Mine was diagnosed as Palindromic, but I certainly had joint damage quite early on. M/X took about 4 months to work, and the adverse effects began to wear off at the same time, ( I upped Folic acid to 6 days a week then too- )
Hey I have been on mtx and sulfalazine since 2017. It took a year until I started feeling better. First year it was just constant struggle and I couldn't see a point in taking so many scary meds with no effect at all.
Hello and welcome. Can I ask how long you have been on 20 mgs MTX ? If you started on a lower dose and built up, things could still improve for you. But, it might be worth contacting your rheumatology department soon if things don't begin to improve.
Don't hang around too long if you don't feel an improvement.
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