I'm on MTX and Plaquenil. Yesterday I took the first raised dose (20 mg) after I was taking 12.5 mg. I have felt better for two days untill I took the injection yesterday. This morning I woke up with my hands, fingers and feet hurting like never before.
I entered this vicious circle with very limited pain, and no inflammation markers in my blood. Now, while being under harsh treatment and a lot of toxicity, my symptoms are getting worse and worse and my blood tests are getting poorer and poorer and the inflammation is getting higher and higher.
My doctor always refers this back to the disease progress not the meds effect.
so..what's going on for God sake. I regret taking all of these meds which will damage my livers and will give me nothing but more pain and misery. My sweet mum is going crazy why I'm getting worse. I started the journey with two swollen fingers with almost no pain. Now, my hands are bending and my fingers are splitting out of pain, Ican't even carry a paper.
Please share your experience using these meds. Now, my drugs are plaquenil twice a day, mtx 20 mg weekly, folic acid 500 micro grams daily except the day of injection. I don't know where I am going to next. I still have a lot of plans to do in this life before I suffer from daily pain.
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halaahmed
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Sometimes with early diagnosis and treatment it can seem as if the drugs are making us worse. This is very unlikely though - your rheumy is probably right to say it's the disease itself gathering momentum.
I came off these two drugs because I couldn't tolerate them 9 months ago. All I can say is that if the drugs aren't controlling your RA properly - as sounds to be the case - then there are plenty of others still left to try. Don't despair!
My life has been dreadful for the past 6 months so I can't recommend going drug free but I'm about to start a new DMARD and am hoping it will prove to be my wonder drug. There is always hope and when you find the right drugs for you your life will improve no end probably.
You know I do well on my meds Hala but that's not why I'm replying. Firstly, can I ask do you live in the UK, it's just that the amount of folic acid you've been prescribed is very low, it's only 0.05mg & generally we're prescribed 5mg, differing amounts as directed by our Rheumies but anything from once weekly to 6 times weekly, you're only taking 3mg a week.
I think you've just to trust & be guided by your Rheumy, he sees your bloods results & examines you not us & what he says is correct, that the disease is progressing hence the need to be on your meds, you've not given the increase in MTX enough time yet. Are your LFT's raised? Unless they are there's no reason to be concerned about damage to your liver & the reason they're taken is to both monitor how the inflammation reduces & also any adverse effect. I can assure you if they were raised your Rheumy or even your GP would react & the dose would be reduced accordingly or you'd be asked to withdraw it. I think I've mentioned before but HCQ & MTX together as double therapy didn't work for me so maybe your Rheumy needs to see if you react to the increase in dose of the MTX before he makes his next choice of treatment, this isn't unusual. It's not exact, one patient isn't the same as another, some people do well from the word go & some don't but you've had such low doses of MTX prior to you seeing him he's now trying his best to get the disease under control.
Has your Rheumy presribed an NSAID for you to try to help with the inflammation yet? If you're in the UK you could try phoning the NRAS helpline, it may help you to talk to someone about your concerns. Unfortuately they'll be closed for the Easter break now til Tuesday I would think but they are very helpful & I'm sure they've helped people who have been concerned about their treatment before.
I don't know the guidelines for Egypt Hala but I do know that in the US it's recommended that only 1 or 2 mg is prescribed not the 5mg guideline in the UK. Similarly the guidelines your Rheumy follows could vary from the NICE & BSR guidelines used by Rheumies in the UK. Your Rheumy prescribed the folic acid so he would be the person to question not your doctor as he's not the specialist presciber.
I hope you can get some proper answers, you need reassurance from the one person who's trying to help things become better for you. How often do you see your Rheumy in Egypt?
When I say my doctor. I mean my rheumy. Because he's the only one I see. The system in Egypt doesn't coordinate between a rheumy and GP. anyway you say that in the uk u take 5 mg a week while in the US they take 1 or 2 mg a week. Anyway he has to see the tablet himself because I checked the prescription and it just says folic acid daily. It didn't specify the amount. So maybe there's a misunderstanding on the dose like what happened with mtx.
No, I take 1 x 5mg folic acid 6 times a week, 1 a day except the day I inject so that's a total of 30mg a week. There does seem to be a lack of clarity in dose prescribed & dose dispensed. When you get your prescriptions & a new med maybe it would be best for you to ask your Rheumy to write down for you (or even better ask him & you write it down) exactly what the dose should be for each med, maybe then this wouldn't happen. Are prescriptions still written by your doctor or Rheumy over there or is it computerised?
I wondered if that was the case, more room for error as you've found to your cost. I would list all your meds & ask your Rheumy to go through it with you adding the dose. Carry the list with you so you can check it against what your chemist dispenses before you leave. That way no errors should be made.
I have a list of all my conditions written down & underneath them the meds I take for each. I carry this in my handbag should anything untoward happen so it's all there for paramedics or whoever is attending to me.
I have to comment and say that I wish I had seen this post much earlier. For those that believe/feel/think that all these meds are providing some degree of relief; I am thrilled for you! Keep in mind though that all things change and that your timeline will differ from another’s.
As for me, at this moment, on April 5,2020; I am DONE with biologics, prednisone and other oral anti-inflammatory meds. For me they are comparable to “poison.” I have other medical conditions brought on by these meds. Millions of people around the world suffer from arthritis, in every form and do not take these meds.
I’m moving to a gentler climate (once it’s safe to do), learn how to cook and shop for beneficial foods, and promote over-all well being. I have had too many physicians fail me. Maybe, I can have a social life now; away from doctors appointments!
Have you had blood tests to test your folic acid levels or any other vitamin blood test if not then it would worth it and ask for vitamin D testing, the B vitamins and folate testing as these are often low in RA other than that keep going because it does take time for these meds to get up to speed - I started on my MTX in September at 10mg which was slowly increased to 20mg by late November and it wasn't really up to pace until early March. Are you drinking plenty of water to help flush out the toxins also are you taking an anti inflammatory med which might help a common over here is Naproxen.
It sounds like you are really fed up, I don't blame you. But in my experience you really need a lot of patience particularly when your Rheumy is getting your inflammation under control.
One thing I noticed when first on drugs is that my joints often felt more painful after the drugs at first, I comforted myself with the thought that it meant they were starting yo get into my join yets! Whether that is medical or not I sure did make me feel better.
It's not usual that drugs cause loads of problems, î think all drugs cause side effects but not everyone gets these side effects , so don't worry about potential problems, worry about the ones the Rheumy says you have! He will check your bloods and closely moniter you to keep you safe. If there are problems they can deal ŵith them quickly.
As the drugs can take 3-6 months in some cases to get into your system it is therefore possible that your disease is rumbling away and the drugs are not in control yet. Would your Rheumy consider giving you some steroids until the drugs kick in?
But whatever I feel for ŷou, it's hard being patient at the beginning until your RA gets controlled but in most cases it will be under control soon. Be kind to yourself and try not to be too worried about things that may not happen I think? This daily pain will improve xxx
So thinking of you, sending Internet hugs over the sea xx A
It's incredibly difficult to know what's responsible for what with RD - it is a disease that waxes and wanes and can be unpredictable.
I must have read thousands of posts and comments from people with RD since I was diagnosed and I've never heard of anyone's disease getting worse as a result of Mtx. It might not work, it usually takes a long time to work and it can cause side effects .... but for it to actually make RD worse would be a new one on me.
I think of RA and PsA etc. as pretty 'toxic' things in a sense. Before PsA I thought 'inflammation' was something that somethimes happened if I got a splinter in my finger. Now I realise that systemic inflammation is very hard on the body. And whatever undesirable effects the meds can have, causing inflammation isn't one of them as far as I know. All of them seem to tackle inflammation to some extent, the big question is usually whether they reduce it sufficiently to help. And resolving that question can come down to trial and error.
Hiya. I am on exactly the same DMARD therapy amounts and meds as you. 20mg of MTX and hydroxychloroquine (Planequenil to you) 200mg twice a day. I started on 15mg of MTX In December and end of January it was upped to 20mg and Hydroxychloroquine was added in. My Rheumy asked me to up my MTX gradually so I took 17.5 mg the next week, the. 20mg. I have recently had to up my folic acid to every day except the MTX day due to the mouth ulcers I got as a Side effect of the MTX, upping it did help. Anyway, what I wanted to say is similar to the other amazing ladies and gents on here. Since being diagnosed in December myself and my family have been amazed and scared by how quickly the disease seems to be affecting me in so many ways. I have discused my concerns about my swollen joints and pain and stiffness with my Rheumy, saying how scary it seems to have progressed! My Rhemy wasn't surprised and said that's how the disease works, unfortunately. Like you my inflammatory markers (over here my CRP) are getting higher and I'm struggling to care for my 2 year old twins as a Stay at home mum to them through pain and severe fatigue. I can blame the meds for only a couple of my symptoms, but even then Rhemuatoid Arthritis has so many different strings to it's now it's hard to see what's side effects and what is the RA! All I know is I have to trust my Rheumy. I saw my mum be very very poorly with RA, many, many joint replacements and revisions, spine operations, more then the person in the Guiness Book of Records (we were in the process of writing to them when Mum died) and I know the terrible joint damage RA can do. When mum was diagnosed it was a case of here is a massive amount of steroid tablets, off you go! It was 1977....
My mum saw the same Rheumy as I do And Mum trusted him so I trust him. I'm not saying it's easy and I'm here for you if you want to PM me but I would agree with the other about your folic acid. I'm on 5mg daily (except thursday when I take MTX, soon to be injection) so I'd look into that. I'd also see whether you can increase the MTX slowly? My Rheumy just wanted to make sure I tolerated it.
Hang in there and trust your Rheumy. Try and look at your meds amount and try not to be scarf. We are all on the end of this virtual help site and I hope that you fell better soon.
The other thing I will add is I also have a good pain control routine that my GP and Rheumy have helped with (as well as my brother in law who is an anaesthetist, so knows about pain meds). I take an anti-inflammatory twice a day (naproxon) paracetamol every 4 hours and tramadol when the pain is bad as I'm going through a flare (like I am currently). I also have splints for my wrists, not sure if your wrists are sore but if they are, that may be something to discuss too and I alternate cold and heat therapy on my joints. At the moment, my joints are sore so cold therapy works better for me. Hope I've helped a little. Unfortunately, I'm still getting flares on my current DMARD regime and my DAS score is getting higher too...so many not be on these drugs for much longer!
Oh dear you must feel terrible. I am only recently diagnosed and had been on steroids reducing dose for 8 weeks. They nearly killed me I am was suffering from ulcerated food pipe and stomach all through my body. Symptoms still awful with explosive diarorhrea and stomach cramps. Going for a CT SCAN next week. Have appointment to see Rheumy doc end of April to start course of Hydroxychloroquine. I am very afraid of starting more drugs. Has anyone any advice on this one?
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